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Forum members would be able to discuss the medical results of the official thread here:
https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787
In this way, we keep clear the other thread. So, from now, there will be two separate threads.
1- The official thread of Results - Gather and Post Here Your Medical Tests Results - Only medical results will be posted, no discussion will be allowed.
2- This thread - Gather and Post Here Your Medical Tests Results - Discussion Thread It will only contain discussions about the results shown in the first thread. Needless to say, you can always use the results shown in the first thread to make your point in any other thread!
Thanks for your participation!
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Hi observer, could you stick to this tread or new treed this idea-
Put here your sugesstions whot to test next <--------trad name for exemple
My english is not so good but my idea is to make treead where people will sugest whot test should be done -(whot to ask doctors to test), tests in private labs clinics etc...(incuding all genetics etc).
I know the whole concept of this forum is actualy the same , but suggestions in one tread will maybe be more focused, and lately will be esier to compare and leadnig to some rasults.
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Observer, you’re so organized! ...Are you sure you have POIS??? ;D
Hahaha, thanks for your words!
Hi observer, could you stick to this tread or new treed this idea-
Put here your sugesstions whot to test next <--------trad name for exemple
My english is not so good but my idea is to make treead where people will sugest whot test should be done -(whot to ask doctors to test), tests in private labs clinics etc...(incuding all genetics etc).
I know the whole concept of this forum is actualy the same , but suggestions in one tread will maybe be more focused, and lately will be esier to compare and leadnig to some rasults.
Hello hopeoneday, I think it is an interesting idea. I don't know if the best option is to open another thread or keep here the discussion. Let's see what other mods have to say. My idea is to leave the other thread only for medical results. In this way, it would be easier for researchers (Especially the one who accepts the RFP, don't forget to contact your GP, doctors, universities, etc) to see the actual data.
If someone has done a previous test (and has shared the results with the forum before), let us know! I am trying to find more analysis by surfing the forum, but it is complicated.
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Ok,
So please if anyone has the ability or knows someone who can read my EGG scan test result and pinpoint where do I show signs ( or perhaps don't ) of brain inflammation that'd be great!
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The medical community in general doesn't care about your data Nas. They have enough patients to generate money why bother with difficult cases like yours. There probably aren't any poiscenter members present which can read that data. You are extremely lucky if a specialist looks into it but it won't happen. I think you should lower your expectations.
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THANK YOU OBSERVER
this is very worth to share our blood tests or other physical or electrophisical results (EEG , QEEG , EMG , ECG , EOG , )or imaging(CT , MRI , FMRI, PET , SPECT , GAMA CAMERA ) , GENETIC results and so on .... we can only get the success with NUMBERS i think . there will be not miracle happen unless we can see the differences that is based on numbers or values .
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Observer, you’re so organized! ...Are you sure you have POIS??? ;D
Hahaha, thanks for your words!
Not just words: sentiments :)
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The medical community in general doesn't care about your data Nas. They have enough patients to generate money why bother with difficult cases like yours. There probably aren't any poiscenter members present which can read that data. You are extremely lucky if a specialist looks into it but it won't happen. I think you should lower your expectations.
Moun, all I'm asking is for someone to read the demn thing, if no one here knows how to read it it's ok, but I'm trying because if someone would actually pin-point that I have brain inflammation then that would save me alot of money and time trying to convince the doctor that I have brain inflammation.
I'm not trying to ask anyone to solve POIS, all I'm asking is that a paper that has some grahps to be read and then confirm if I have anything at all.
I'm not the first asshole to get brain inflammation from what ever reason, if a neurologist can't fix brain inflammation then IDK why the fuck is he a neurologist in the first place.
I don't have expectations, I'm not asking for people to solve my POIS, all I'm asking is for people to READ my fucking paper.
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It's highly unlikely Nas. Even if a researcher is reading this they probably will not get into contact with you or with other people who have posted results to tell you their analysis. The medical test results could give researchers ideas about POIS and use it for their future research. It also gives patients something to check out for themselves, post their data on the thread as well, compare it with the rest and find a common denominator. And one thing I have learned so far is that most doctors have zero creativity, they have trouble thinking outside their standard algorithms and tackle new stuff. Combine that with the rarity of this disease, the nature of the symptoms, the bureaucracy and the corporate character of the health care system nowadays and chances are very slim you will get an answer. I do understand your frustration though, I'm in the same position.
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Muon,
You don't get me, I'm not asking the doctor or anyone to treat POIS, 1- I'm sure this graph is not that hard to read if you have knowlege about the subject, if not, that's fine I'm not begging. 2- I do understand your fraustration with doctors and what not, but I personally learned that we shouldn't go to doctors and ask them for a POIS treatment, rather we should ask them to deal with our POIS symptoms that mostly annoy us, like brain inflammation for example.
I learned through out my experiance with POIS to not have expectations only action, and while doctors are not going to fix us, we should fix our selves, and that's what I'm trying to do.
I honestly don't understand your negative tone about the graph. Or this existential dread that made you bring this subject up. I fully realise what your saying muon but I have no choice but to take action, it's not like this is a minor syndrom that I have to deal with the rest of my life. This is a life ruiner and witheach orgasm I feel my cognitive symptoms are getting worse and my brain is swelling inside of my head without me doing anything about it.
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Oh I'm sorry Nas I didn't mean it in a negative way. Perhaps I misunderstood, forget what I have said then. Quite a pointless discussion from my side anyway.
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Sexual hormones
E2 (pg/mL) 86.98∗ 0?39.8
Prolactin (ng/mL) 1.09∗ 2.1?17.7
Testosterone (ng/dL) 10.49∗ 241?827
LH (mIU/mL) 8.03 1.5?9.3
FSH (mIU/mL) 17.15 1.4?18.1
Hi elewated estrogen, extr low testosterone, low prolactin and docs dont hawe a clue how to help this man.
They mentioned this as posible inwoled in pois, i noticet in Muons case hi elevated t1:
Variable disorders of the innate and adaptive immune systems, including T-helper cell type 1, 2, and 17 immunity, might be involved in the pathogenesis of POIS, and the roles of specific components of the immune system remain to be investigated.
https://www.sciencedirect.com/science/article/pii/S2050116118300199
Whot is intresting low igg3 , i found this woman wich is helped by imunoteraphy.
She also hawe pelvic pain etc...
http://pmj.bmj.com/content/postgradmedj/70/830/924.full.pdf
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Hi Muon, did you tested cd-57? It will be intristing to see is it low!
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Hi HOD, elevated numbers of CD57+ NK cells play a role in acute infections (like CMV) but in my case it's low. Persistent low numbers can make you susceptible for infections. I have no idea why they are decreased. My brother did the same test but his result is normal, interferon gamma was also in the normal range for him.
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I know that some of us dont like lyme and lyme coinfections teory, but it is wery posible to some of us.
See- http://www.tiredoflyme.com/cd57.html
https://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/3481919-cd-57-results-back
I expected low cd57 in you tests!
No person with cronic lyme hawe tha same symptomes, but in general is known that lyme are in brain and could be in all organs in body...
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Yes I'm aware of the link with Lyme (I think there was also a link with a particular mycoplasma strain). However I have been tested for Lyme more than once, my brother as well, all negative. Other family members show similar symptoms as I do. We have something in common but I don't think it's Lyme. My brother has POIS but his CD57+ NK cells are normal. If it is Lyme in my case, which I don't think it is, then it's probably some secondary infection besides the main cause of POIS.
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I also tested negative for Lyme (no detectable Lyme antibodies). Please see the updated Virus and bacteria test abnormal: (http://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039) section of my blood test.
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I think that lyme antibody test is irelevant in cronic late stages.
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Other family members show similar symptoms as I do. We have something in common but I don't think it's Lyme. My brother has POIS but his CD57+ NK cells are normal.
Oh wow you just literally proved that POIS is genetic; which is very important to take into consideration when theorizing about POIS treatment.
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Other family members show similar symptoms as I do. We have something in common but I don't think it's Lyme. My brother has POIS but his CD57+ NK cells are normal.
Oh wow you just literally proved that POIS is genetic; which is very important to take into consideration when theorizing about POIS treatment.
My sons have no POIS.
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Please see the updated Virus and bacteria test abnormal: (http://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039) section of my blood test.
It says that you have been infected with those viruses at one point in time but doesn't tell you anything about reactivation (keep in mind that vaccines can also increase IgG). They could be dormant/latent and perhaps use a mechanism to avoid the immune system. Where they lie dormant and what type of cell is involved is hard to know, I don't know if there are even tests available for this. I will not be surprised if other viral antibody types (IgA and IgM) are negative though.
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Please see the updated Virus and bacteria test abnormal: (http://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039) section of my blood test.
It says that you have been infected with those viruses at one point in time but doesn't tell you anything about reactivation (keep in mind that vaccines can also increase IgG).
Only VZV (HHV-3) has a vaccine. So the VZV test might not say much. However, the other two positive IgGs, CMV (HHV-5) and HHV-6 do not have vaccines. A positive IgG test for CMV means that I have the virus in my body currently. The same is true for HHV-6, I have the virus in my body currently. These viruses are brought out of latency by anything that can raise prostaglandins PGE2 or PGF2 in the infected cells.
They could be dormant/latent
Latent herpes viruses are very busy genetically. They transcribe their latent genes and modify cell metabolism while in the latent state (up-regulate NF-kB, COX-2, etc...). Latent herpes virus can also trigger chronic immune response from glia cells (Ideas on Herpes Induced POIS: Stress Triggers for Herpes reactivation (http://poiscenter.com/forums/index.php?topic=2683.msg23767#msg23767)).
They could be dormant/latent and perhaps use a mechanism to avoid the immune system.
The immune system is what causes herpes to go into latency. If the immune system does not detect the virus, it will continue to replicate causing an endless outbreak. Cytokines, hormones and other molecules from immune cells shut off the activation/replication and maintain latency. However, CMV/HHV-5 seems to never truly stay latent.
"Although all herpesviruses persist for the life span of the host, recent findings suggest that HCMV has a unique replication strategy for maintenance within the host, wherein the virus establishes sites of persistent active replication even in the presence of high levels of preexisting HCMV-specific immunity. A number of cell types, including myeloid lineage cells, smooth muscle cells, and endothelial cells (ECs), appear to be critical as sites of HCMV persistent replication and latency."
-Human Cytomegalovirus Tropism for Endothelial Cells: Not All Endothelial Cells Are Created Equal (http://jvi.asm.org/content/81/5/2095)
I will not be surprised if other viral antibody types (IgA and IgM) are negative though.
You are correct since IgM usually does not increase even when there is a herpes outbreak with skin lesions. IgM is only produced for the initial infection. That is why I did not get that test. I did not see the IgA test offered from the lab I got the blood test at. The only other test they offered was PCR $500+.
The reason I take these test is not to prove any theory. I got these test to try to disprove or rule out herpes and lyme as possible causes of POIS. I believe that by process-of-elimination we can narrow down the list of possible causes. I believe my test results allow me to rule out the following as not being the cause of POIS:
- genetic autoimmune disease
- HIV, Hepatitis ABC, HSV-(1,2), HHV-4
- lyme, candida, H.pylori
- food allergy (gluten, dairy, egg)
- urinary tract or prostate infection (bacteria)
- hormonal imbalance
- chronic inflammation
I tried to rule out herpes in general, but unfortunately I tested positive for VZV, CMV, HHV-6. So for now herpes is still a possible cause. I was hoping I would not test positive for CMV, because CMV is tricky to treat directly.
Thanks for your good question Muon. I actually learned some things about CMV answering these questions! :)
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Cytokines, hormones and other molecules from immune cells shut off the activation/replication and maintain latency. However, CMV/HHV-5 seems to never truly stay latent.
So in theory you could have elevated cytokines? Perhaps it's worth to investigate panels of cytokines in your case.
Human Cytomegalovirus Tropism for Endothelial Cells: Not All Endothelial Cells Are Created Equal
Interesting link. This struck my mind lately, the possibilty of viral latency in mast cells or endothelial cells.
I believe my test results allow me to rule out the following as not being the cause of POIS
hmm I'm not so sure about the last two on that list. Why do you think you have ruled out hormonal imbalance and chronic inflammation as cause?
So for now herpes is still a possible cause
I agree.
Ok take a look at this post nanna1: http://poiscenter.com/forums/index.php?topic=299.45msg#45
It sounds to me like one person infected the other. If she speaks the truth then I find it highly unlikely a male POIS patient (which is rare disease) met a female POISER (which is extremely rare) or they are somehow of the same family line. Now what are the chances this will happen? Chances are extremely slim. I don't buy it. My suspicion goes out to an infection for that case. What do you think?
She also has https://en.wikipedia.org/wiki/Restrictive_cardiomyopathy
''RCM is a form of cardiomyopathy in which the walls of the heart are rigid''. This reminds of the point quantum raised in the endothelial dysfunction thread about collagen defects related to arterial walls. Did she develop it before she met her boyfriend or after, I can't make it up from the text.
What is your next step nanna1? Are you planning for other tests?
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Intresting, i work all my life with electronics and 20 years welding with lead wire( mercury in ledad) and electronics full of flux(welding cemical-tocsic and iritant lead and merury), and 20 years my head is 8h a day 1cm far from florescent bulb wich is in my microscope (light bulb mercury filled).
Me personaly hawe amalgam feelengs to, and mold exposure on working place.
This is beutiful combination to my pois(gift from hawen).
https://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/10606429-cd57-not-just-lyme-med-report
Low cd57 also viral couse coud be the reason.
>>>>>Also, not all Lyme Patients will have low levels of killer T cells. My "ration" is low but not my absolutes.
I believe most Lyme patients will have a high viral low
due to the disturbance in the body's immune surveillance. Also, the damaged mitochondria will allow for a viral load.
I will need to do research in to this because the extensive research I have done says that CD-57 is specific to Lyme. Granted I understand there are many thing that can effect an Ig.
Lyme and Mercury have almost similar symptoms. The two look identical if you were to do a clinical examination. That is because they both have neurotoxic effects on the body. Also, a majority of Lyme patients also suffer from mercury toxicity.
I know this first hand. My doctor was familiar with metals and tested me for toxicity and not Lyme. It wasn't until I got really ill through chelation did I find the Lyme Disease <<<<<<
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Guys, something is fuxking our imune sysetem (supresed or oweractive).
Unknown infection-pumping cortisol and we hawe pois?
I remeber one man he sed, anything what is couse to puming cortisol in your body you will hawe pois from that.
We are in constant loop > 8 < . (inbalance)
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I believe my test results allow me to rule out the following as not being the cause of POIS
hmm I'm not so sure about the last two on that list. Why do you think you have ruled out hormonal imbalance and chronic inflammation as cause?
You are correct in questioning my assertion about "chronic inflammation". I should have said "systemic inflammation". I obviously do have chronic inflammation somewhere in my body, but my platelet count, sedimentation rate (SED), low-density-lipids (LDL) and homocysteine levels are all normal. Since all of these parameters are sensitive to phospholipase A2 activity, I assume any inflammation in my body is specific to tissue (local) rather than circulating in the blood (systemic). Also, these test were not timed around an orgasm. So I do not know what the post-orgasm parameters would be.
My Thyroid, vitamin D and cortisol test are normal. I did not post my cortisol results. I do not have testosterone and estrogen test.
Ok take a look at this post nanna1: http://poiscenter.com/forums/index.php?topic=299.45msg#45
It sounds to me like one person infected the other. If she speaks the truth then I find it highly unlikely a male POIS patient (which is rare disease) met a female POISER (which is extremely rare) or they are somehow of the same family line. Now what are the chances this will happen? Chances are extremely slim. I don't buy it. My suspicion goes out to an infection for that case. What do you think?
This is an interesting case. I'll read more into it. Thanks Muon for sharing this. I would not have found this post.
What is your next step nanna1? Are you planning for other tests?
I recently took two blood test (homocysteine and tryptase). I plan to take a histamine test some time next week. I'm trying to reduce the number of variables that are absolutely needed to cause of POIS. Hopefully through a process of elimination we can develop a more targeted treatment strategy. I added the results from the homocysteine test here (http://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039). It is in the "Methylation/homocysteine blood test:" section towards the bottom of the results post, right before the "Summary:" section. The results of the tryptase test are not in yet.
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We need more people going to labs to run tests and reporting back. Look at the forum, there are hundreds of threads and there is barely any progress. If we wait for researchers we can wait for an eternity, in the meantime we should do our own tests because this is going nowhere. I suggest we take a wide approach and test obscure parameters that haven't been tested yet and run tests for parameters that already showed abnormal values in people to double check it. Oh and does anyone have any ideas about Habibou's blood/urine tests results?
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My brother did some testing on MAOA, COMT and BDNF genes. The immunologist made a comment for the combination of all of them together. He noted that this combination is associated (aside from a slower degradation of catecholamines) with elevated cortisol and ACTH in the neuroendrocrine stress axis. The elevated ACTH level of certainlypois2 might not be a single isolated case. My brother never did a follow up test for ACTH. I will check this parameter in the near future for sure. Question for certainlypois2: Are these test results for herpes only positive for IgG or IgM as well?
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i dont know about hsv1 but for EBV IGM doesnt have a number, IGG and nuclear AG high.
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I got permission from my brother to post his data and have done so, see the second link: http://poiscenter.com/forums/index.php?topic=2545.0
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Thanks Muon, thouse info are gold. You conecting all thing we mention togetdher.
I lke this. Conecting things to the root couses from ours test results and symptoms.
Aditues like this is our only chance!
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https://www.walkinlab.com/ hhv1 - 6 can be ordered through this website without a drs appointment. Is it necessary to also test for hhv7 and hhv8.
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Thanks certainlypois2 for posting your lab test result and thanks for sharing the walkinlab link. I have used https://requestatest.com/ to order from https://www.labcorp.com/test-menu/search since Labcorp does not allow individuals to order directly from them.
I don't think a HHV-8 test for POIS is necessary since that is a cancer inducing herpes virus. HHV-7 is a T-cell herpes virus. If people start producing blood test with low T-cell counts, then HHV-6 and HHV-7 might be worth looking at. Thanks again for all your work.
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So Quotz posted his test results here: http://poiscenter.com/forums/index.php?topic=2684.msg24642#msg24642
I only have one question though, were you on POIS when you did these tests, if yes, I'm very curious about your EGG coming out normal.
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So Quotz posted his test results here: http://poiscenter.com/forums/index.php?topic=2684.msg24642#msg24642
I only have one question though, were you on POIS when you did these tests, if yes, I'm very curious about your EGG coming out normal.
Hmm, difficult to answer this question. I more or less constantly have brain fog, its just that sometimes things make it worse, and sometimes theres things that make it better. After intercourse my brain fog gets reaaally worse. When I did the EEG I did have brain fog (not a severe one though), but I did not have intercourse or masturbate or ejaculate in any way beforehand. One reason I did the EEG was to check whether my epilepsy was coming back - when I was a kid I had absence seizures that were appearing due to stress or heavy breathing of some sorts.
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So Quotz posted his test results here: http://poiscenter.com/forums/index.php?topic=2684.msg24642#msg24642
I only have one question though, were you on POIS when you did these tests, if yes, I'm very curious about your EGG coming out normal.
Hmm, difficult to answer this question. I more or less constantly have brain fog, its just that sometimes things make it worse, and sometimes theres things that make it better. After intercourse my brain fog gets reaaally worse. When I did the EEG I did have brain fog (not a severe one though), but I did not have intercourse or masturbate or ejaculate in any way beforehand. One reason I did the EEG was to check whether my epilepsy was coming back - when I was a kid I had absence seizures that were appearing due to stress or heavy breathing of some sorts.
Hmmm, maybe your brain fog condition was too minor to appear on the EGG, Brain fog is a case of mild inflammation anyways so I guess it didn't pick it up.
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Thank you Quotz for posting your medical data! Also, thanks Muon and please thank your brother for allowing his medical data to be posted!
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I have a really weird suggestion, can you guys ejaculate before taking a test, wait for about 5 minutes and make a blood test looking for semen components in your blood stream?
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So Quotz posted his test results here: http://poiscenter.com/forums/index.php?topic=2684.msg24642#msg24642
I only have one question though, were you on POIS when you did these tests, if yes, I'm very curious about your EGG coming out normal.
Hmm, difficult to answer this question. I more or less constantly have brain fog, its just that sometimes things make it worse, and sometimes theres things that make it better. After intercourse my brain fog gets reaaally worse. When I did the EEG I did have brain fog (not a severe one though), but I did not have intercourse or masturbate or ejaculate in any way beforehand. One reason I did the EEG was to check whether my epilepsy was coming back - when I was a kid I had absence seizures that were appearing due to stress or heavy breathing of some sorts.
Hmmm, maybe your brain fog condition was too minor to appear on the EGG, Brain fog is a case of mild inflammation anyways so I guess it didn't pick it up.
Yeah hmm maybe. Any case, I might do it again at another doctor to see the difference. Funny thing is that whenever I eat carbs my nose gets stuffy and and i become more foggy, I just realized. I will try TRT to see if it works, if I can get my hands on it.
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Hi quotz, thanks for test results, its wery helpful.
"My personal opinion" for your brain fog could be from low testosterone lewels.
I am curisos about did you mesured yours estradiol?
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Hi quotz, thanks for test results, its wery helpful.
"My personal opinion" for your brain fog could be from low testosterone lewels.
I am curisos about did you mesured yours estradiol?
Yeah I did, it was somewhere around 15 units, not sure of the measurement, check it out in my medical files, its in the same file as the testosterone
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Another suggestion,
Can you guys make two blood tests, one before ejaculation and one after, then we observe antibody activity to see what type is responsible for the immune response, many members tested normal for IgE for example but testing for the activity right after ejaculation could be a better method to determine weather the antibody is actually active during POIS or not.
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Two last mebers posted low white blod tests-
Acording to mayo clinic-
https://www.mayoclinic.org/symptoms/low-white-blood-cell-count/basics/causes/sym-20050615
What is intrseting to me is sarcoidosis, from all odher posible couses malnutrition, viral interupting bone marow etc...
Low Neutrophil https://www.mayoclinic.org/symptoms/neutropenia/basics/causes/sym-20050854
And again lyme dese is ollways there- and symptomes allways go 1/1 to POIS https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651
bells palsy - some poiser report that symptom to.
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Two last mebers posted low white blod tests-
Acording to mayo clinic-
https://www.mayoclinic.org/symptoms/low-white-blood-cell-count/basics/causes/sym-20050615
What is intrseting to me is sarcoidosis, from all odher posible couses malnutrition, viral interupting bone marow etc...
Low Neutrophil https://www.mayoclinic.org/symptoms/neutropenia/basics/causes/sym-20050854
And again lyme dese is ollways there- and symptomes allways go 1/1 to POIS https://www.mayoclinic.org/diseases-conditions/lyme-disease/symptoms-causes/syc-20374651
bells palsy - some poiser report that symptom to.
Yes, HOD, this could be a sign of Granuloma cells concentration.
If true, then this indicates that the immune system is dealing with subsistence that it can not eliminate.
It would be great if we can narrow down possible substances involved in orgasm/ejaculation that can be susceptible to Sarcoidosis.
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Yes, HOD, this could be a sign of Granuloma cells concentration.
If true, then this indicates that the immune system is dealing with subsistence that it can not eliminate.
It would be great if we can narrow down possible substances involved in orgasm/ejaculation that can be susceptible to Sarcoidosis.
I just came across a case report about testicular sarcoidosis: https://onlinelibrary.wiley.com/doi/pdf/10.2164/jandrol.110.012534
The case is connected to infertility. I have no idea whether it is relevant for understanding POIS.
There is also sarcoidosis of the prostate: https://www.sciencedirect.com/science/article/pii/S002253471304353X
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Hi BluesBrother,
Thanks for sharing your medical data. There is a lot of information in your test!
A few patterns in the medical data (https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787):
immune cells
--4 of us show normal neutrophil levels (Muon and Muon's brother (http://poiscenter.com/forums/index.php?topic=2684.msg24021#msg24021), Nas (https://poiscenter.com/forums/index.php?topic=2684.msg25752#msg25752), Vandemolen).
--6 of us show low neutrophil counts (nanna1 (http://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052), quotz (http://poiscenter.com/forums/index.php?topic=2684.msg24642#msg24642), BluesBrother (http://poiscenter.com/forums/index.php?topic=2684.msg24765#msg24765), certainlypois2 (http://poiscenter.com/forums/index.php?topic=2684.msg24532#msg24532), coal (https://poiscenter.com/forums/index.php?topic=2684.msg27246#msg27246), Hopeoneday (https://poiscenter.com/forums/index.php?topic=2684.msg30423#msg30423)).
--1 of us show low monocyte levels (quotz)
--2 of us show low natural killer cell (NK cells) levels (muon, Brazil POIS study 2019 (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835))
--3 of us show low lymphocyte levels (muon, fernab, Brazil POIS study 2019 (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835))
----1 of us show low B cell lymphocytes (Brazil POIS study 2019 (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835))
--1 of us show lymphocytes do not increase in response to lung infection (aswinpras06 (https://poiscenter.com/forums/index.php?topic=2684.msg24812#msg24812))
IgG subtypes
--2 of us show low IgG3 (Disaster (https://poiscenter.com/forums/index.php?topic=305.msg22540#msg22540), Kim POIS Study (https://www.sciencedirect.com/science/article/pii/S2050116118300199))
--2 of us show normal IgG3 (Muon, Muon's brother)
MCAS and mastocytosis test
--8 of us show normal trypase (mast cell activation syndrome) levels (itsmel, BluesBrother (https://poiscenter.com/forums/index.php?topic=2684.msg24765#msg24765), nanna1 (https://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052), Vandemolen (https://poiscenter.com/forums/index.php?topic=2684.msg25508#msg25508), Muon, Muon's brother (https://poiscenter.com/forums/index.php?topic=2684.msg24021#msg24021), jakov (https://poiscenter.com/forums/index.php?topic=2684.msg27828#msg27828), Simon66 (https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995)).
--11 of us show normal IgE (allergy) levels (BlueBrother (https://poiscenter.com/forums/index.php?topic=2684.msg32284#msg32284), aswinpras06, certainlypois2 (https://poiscenter.com/forums/index.php?topic=2684.msg24532#msg24532), Vandemolen, kurtosis (https://poiscenter.com/forums/index.php?topic=526.msg7660#msg7660), rjmlr (https://poiscenter.com/forums/index.php?topic=526.msg6150#msg6150), Yin POIS Study (https://www.sciencedirect.com/science/article/pii/S1743609515309632), jakov (https://poiscenter.com/forums/index.php?topic=2684.msg27828#msg27828), Depreux POIS study (https://doi.org/10.1016/j.androl.2017.06.002), kingfisher (https://poiscenter.com/forums/index.php?topic=2684.msg28087#msg28087), Arata POIS study (https://onlinelibrary.wiley.com/doi/full/10.1002/cia2.12123))
--3 of us show normal histamine levels (nanna1 tested histamine, itsmel and Muon tested histamine and N-methyl-histamine).
--1 of us show low histamine levels (Simon66 (https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995), tested histamine and N-methyl-histamine)
--1 of us show normal PGD2 levels (muon (https://poiscenter.com/forums/index.php?topic=2684.msg24021#msg24021)).
--1 of us test negative for mastocytosis (Stafie POIS study (https://www.researchgate.net/publication/333610277_The_Post_Orgasmic_Illness_Syndrome_POIS_Selective_Bibliography/link/5e35c06d458515072d76dd5a/download))
Autoimmunity test
--5 of us have normal autoimmune panel test (nanna1 (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039), quotz, Vandemolen, muon, Arata POIS study (https://onlinelibrary.wiley.com/doi/full/10.1002/cia2.12123)).
--1 of us show possible autoimmunity (Iwillbeatthis), correlated with positive EBV (HHV-4) infection
--1 of us show normal/negative autoimmune antibody test for onconeural antibodies, insulin, peripheral NMDA-receptor, adrenal-cortex, potassium channel, glutamic acid decarboxylase (Muon's brother (https://poiscenter.com/forums/index.php?topic=2545.msg22020#msg22020))
Inflammation
--4 show normal C reactive protein (CRP) (kingfisher, certainlypois2 (https://poiscenter.com/forums/index.php?topic=2684.msg24532#msg24532), BluesBrother (https://poiscenter.com/forums/index.php?topic=2684.msg33828#msg33828), Simon66 (https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995))
--3 show normal ESR (Simon66, nanna1, certainlypois2)
--1 complement system activity (C3a, C4) normal (BluesBrother (https://poiscenter.com/forums/index.php?topic=2684.msg32284#msg32284))
methylation
--3 of us have normal folate levels (certainlypois2 (http://poiscenter.com/forums/index.php?topic=2684.msg24954#msg24954), quotz, BluesBrother)
--3 of us have normal homocysteine levels (BluesBrother, nanna1, jakov).
Testosterone
"The global prevalence of testosterone deficiency (TD) ranges from 10-40%."
-Testosterone deficiency in adults and corresponding treatment patterns across the globe (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5422691/)
--16 of us showing normal testosterone levels (BluesBrother (https://poiscenter.com/forums/index.php?topic=2684.msg33828#msg33828), nanna1 (https://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052), Nas, Attia POIS Study (https://poiscenter.com/forums/index.php?topic=2684.msg27145#msg27145), Starsky (https://poiscenter.com/forums/index.php?topic=3267.msg33937#msg33937), coal (https://poiscenter.com/forums/index.php?topic=2684.msg27246#msg27246), Vandemolen (https://poiscenter.com/forums/index.php?topic=2684.msg25508#msg25508), CertainlyPOIS (https://poiscenter.com/forums/index.php?topic=2684.msg25438#msg25438), fernab, Morgentaler POIS Study (https://www.sciencedirect.com/science/article/pii/S221444201930453X?fbclid=IwAR141vgIvBqRmEQQ6ohjbqO8SrhZ16Vo2xgIKfj1dY-laV5fN3Q_yFHvT_c), Simon66 (https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995), Clues (https://poiscenter.com/forums/index.php?topic=3202.msg34002#msg34002), mardi (https://poiscenter.com/forums/index.php?topic=3267.msg35201#msg35201), drop247 (https://poiscenter.com/forums/index.php?topic=2684.msg36516#msg36516), Kryzhanovsky POIS study (https://poiscenter.com/forums/index.php?topic=2684.msg36648#msg36648)).
--5 of us showing low testosterone (Quotz, Kim POIS Study (https://www.sciencedirect.com/science/article/pii/S2050116118300199#tblS1), jakov, EDS (https://poiscenter.com/forums/index.php?topic=2684.msg25436#msg25436), Kashanian POIS study (https://www.tandfonline.com/doi/abs/10.1080/21681805.2019.1704861?journalCode=isju20&)).
--Testosterone test timed before and after orgasm (1 decreased): Kryzhanovsky POIS study (https://poiscenter.com/forums/index.php?topic=2684.msg36648#msg36648)
Cortisol
--6 of us show normal cortisol (fernab (https://poiscenter.com/forums/index.php?topic=2684.msg27801;topicseen#msg27801), coal (https://poiscenter.com/forums/index.php?topic=2684.msg27246;topicseen#msg27246), POIS case study(2016) (https://poiscenter.com/forums/index.php?topic=2684.msg27145;topicseen#msg27145), CertainlyPOIS (https://poiscenter.com/forums/index.php?topic=2684.msg25438;topicseen#msg25438), Martin88 (https://poiscenter.com/forums/index.php?topic=2684.msg25438;topicseen#msg25438), Jferr (https://poiscenter.com/forums/index.php?topic=2684.msg25437;topicseen#msg25437))
--4 of us show high cortisol: jakov (https://poiscenter.com/forums/index.php?topic=2684.msg27828;topicseen#msg27828), Nas (https://poiscenter.com/forums/index.php?topic=2684.msg25940;topicseen#msg25940), Simon66 (https://poiscenter.com/forums/index.php?topic=2684.msg24995;topicseen#msg24995), quotz (https://poiscenter.com/forums/index.php?topic=2684.msg24642;topicseen#msg24642)
--Cortisol test timed before and after orgasm (2 decreased): EDS (https://poiscenter.com/forums/index.php?topic=2684.msg25436;topicseen#msg25436), Crushgrapes (https://poiscenter.com/forums/index.php?topic=2684.msg25429;topicseen#msg25429)
viral infections
--6 of us show positive cytomegalovirus HHV-5 infections (nanna1, muon, rjmlr, jakov (http://www.poiscenter.net/viewtopic.php?f=11&t=1694#p15143), kingfisher (https://poiscenter.com/forums/index.php?topic=2684.msg28087#msg28087), fernab (https://poiscenter.com/forums/index.php?topic=2684.msg28537#msg28537)).
--3 of us show positive EBV (HHV-4) infections (Certainlypois2, Iwillbeatthis (https://poiscenter.com/forums/index.php?topic=2684.msg26171#msg26171), fernab (https://poiscenter.com/forums/index.php?topic=2684.msg28537#msg28537)).
--8 of us show negative HIV test (nanna1, Muon, Vandemolen, Brazil POIS study 2019 (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835), fernab, kingfisher, quotz, BluesBrother (https://poiscenter.com/forums/index.php?topic=2684.msg24765#msg24765))
--3 report negative hepatitis (A, B, C) virus (nanna1, fernab, kingfisher)
bacteria
--4 of us test negative for lyme (muon, nanna1, quotz, fernab (https://poiscenter.com/forums/index.php?topic=2684.msg28537#msg28537))
--2 of us test positive for lyme (b_jim, Eliasjoelrivera)
--4 of us test negative for H. pylori (nanna1, quotz, BluesBrother, kingfisher)
--1 of us test negative for mycoplasma pneumoniae (jakov)
non-arousal triggers for POIS-like symptoms
These are triggers that do not involve sexual activity or direct stimulation/involvement of the reproductive organs
--6: exercise (Muon, Quantum, demografx (https://poiscenter.com/forums/index.php?topic=2752.msg24729#msg24729), nanna1, b_jim (https://poiscenter.com/forums/index.php?topic=2752.msg24868#msg24868), POISse, wolf berry)
--5: heat, warm temperature, hot showers (Limejuice (https://poiscenter.com/forums/index.php?topic=2752.msg24874#msg24874), demografx, b_jim, POISse (https://poiscenter.com/forums/index.php?topic=2752.msg24978#msg24978), wolf berry (https://poiscenter.com/forums/index.php?topic=2752.msg28443#msg28443))
--4: sleep disturbance, jet lag (nanna1, demografx, POISse, b_jim)
--3: scratching or applying pressure to specific locations on the body (fernab (https://poiscenter.com/forums/index.php?topic=2752.msg25527#msg25527), nanna1 (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039), aswinpras06 (https://poiscenter.com/forums/index.php?topic=2752.msg28444#msg28444))
--2: smoking cigarette (Nas (https://poiscenter.com/forums/index.php?topic=2752.msg24713#msg24713), POISse)
--1: pressure on the center of abdomen/stomach (IronFeather (https://poiscenter.com/forums/index.php?topic=2755.msg32123#msg32123))
Left-right asymmetric symptoms post-orgasm
--6 have some left-side only or right-side only symptoms (Muon, nanna1 (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039), fernab, POISse, swell (https://poiscenter.com/forums/index.php?topic=2819.msg25566#msg25566), Case 1-Goldstein POIS study (https://poiscenter.com/forums/index.php?topic=2683.msg30669#msg30669), eur79m (https://poiscenter.com/forums/index.php?topic=1136.msg10955#msg10955))
Other interesting parameters:
--Muon's test showing elevated IL-8 and low IL-2
--Nanna1 showed elevated creatine kinase
--Quotz test showing Mycoplasma Pneumoniae related immunofluorescence
--Habibou (http://poiscenter.com/forums/index.php?topic=2684.msg23837#msg23837) blood test show high norepinephrine (noradrenaline) levels in January 2011.
These threads are useful when interpreting the medical data:
Neuroendocrine responses to arousal and orgasm (https://poiscenter.com/forums/index.php?topic=2900.msg26917#msg26917)
Non-arousal triggers of pois-like symptoms (https://poiscenter.com/forums/index.php?topic=2752.msg24705#msg24705)
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my blood test reports done recently for a lung infection
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Entamoeba histolytica has the ability to bore through the intestinal wall:
''The amoeba can actually 'bore' into the intestinal wall, causing lesions and intestinal symptoms, and it may reach the blood stream''
They also can release tissue destroying enzymes when certain type of sugars bind to their adhesive lectin binding molecule.
https://en.wikipedia.org/wiki/Entamoeba_histolytica
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3104091/
Entamoeba histolytica and IL-8 production:
http://iai.asm.org/content/76/11/5158.short
https://www.gastrojournal.org/article/S0016-5085(97)70035-0/abstract
https://www.jci.org/articles/view/118161
Elevated lactoferrin could be a marker of intestinal inflammation. I wonder if lactoferrin and Entamoeba histolytica are related to eachother.
@aswinpras06:
Do you know what kind of infection? Have you been checked for Mycoplasma pneumoniae?
And are you going to check these abnormal parameters again when the infection is gone?
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Thanks a lot Muon for your advice
I'll definitely check for Mycoplasma pneumoniae if you my current test for tb comes negative.
My doctors have diagnosed my disease as a lung abscess and are so far could not identify what has caused it. I am a non-alcoholic and non-smoker. So the most possible cause as per my doctor is, it should be tuberculosis. They have done so many tests for tb and all came negative. Fungal test also came negative. So they've done bronchoscopy and are now waiting for the BAL fluid culture results based on which they will offer treatment.
I have not told them about Pois because I knew it would be of no use.
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Hi Nas,
Neutropenia (https://en.wikipedia.org/wiki/Neutropenia#Causes) (low neutrophil levels) is a rare condition. Hopeoneday mentioned (http://poiscenter.com/forums/index.php?topic=2695.msg24767#msg24767) that low neutrophil counts seemed to be a pattern in some of the POISer medical data. So I did a statistical analysis on the current data donated by POISers at "Gather and Post Here Your Medical Tests Results (http://poiscenter.com/forums/index.php?topic=2684.0)". This includes 5 POISers who have posted Complete Blood Count (CBC) count data. I excluded one POISer data set because the CBC test was taken during a non-chronic infection/disease (outlier). Here are the results so far:
(https://i.imgur.com/ryZ00rH.png)
The above chart shows the prevalence of low neutrophil levels (neutropenia) for individuals in the United States of America (USA) according to ethnicity (Hispanic 0.38%, white 0.79%, black 4.5%) and individuals with POIS (60%) from this forum. The data for neutropenia in the USA was taken from "Prevalence of neutropenia in the U.S. population: age, sex, smoking status, and ethnic differences. (https://www.ncbi.nlm.nih.gov/m/pubmed/17404350/)"
The error bars (confidence intervals, sample errors) for the population samples were calculated using the population proportion estimate (https://en.wikipedia.org/wiki/Population_proportion) with a confidence interval of 90%. This means that we can be 90% confident that the real percent of POISers with neutropenia lies within those error bars. But note that the confidence interval (error bars) for POISers and the general population do not overlap. This is a statistically significant result. The more POISers that submit their CBC test, the smaller the error bars will become and the closer we will get to the true probability of neutropenia among POISers. This could end up becoming the first bio-marker for this disease. But we need more data! A sample size greater than 10 people is ideal.
I would like to do this statistical analysis for other interesting parameters (http://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788) as well. But there is not enough medical data for those parameters to reduce confidence interval. In some cases, the sample size is only 1. In any case, thanks Nas for asking. I hope this answers your question.
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cbc test is pretty cheap($28) on walkinlab.com
The when i get off my current supplement trial i will test it again pre and post orgasms.
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I will check but I think all my white cells parameters are normal.
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Message from LPM moved here from another thread:
Thank you for this great effort. We need more people using their skills to do what they can to find a solution. And we need to work together.
Please see the survey that I am starting: https://poiscenter.com/forums/index.php?topic=2753.0 I would love to hear everyone's comments and suggestions for improvement while the survey is still in draft stage.
In the survey, among other things, I ask about the symptoms, the medical tests, and whether any cures have helped. My hope is to try to correlate these things with each other. Perhaps a particular blood test result (such as low white blood cell count) correlates with particular cures.
Having all this info in a single data system should help with the research.
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Nanna1, I do have low testosterone values which I have posted there in the evidence, however, the reference ranges in the document are outdated or improperly done. I suppose theyre done that way because I currently reside in a third world country, and the public healthcare system is trying to cut costs or the people operating it are incompetent. I have converted my values according to the reference values used in the US and it shows I do have low testosterone. For my age, 21 years old male, I have testosterone values of a 60 year old male.
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I think we're making alot of progress when it comes to individual tests. There is a growing evidence that POISers are suffering from an over active immune system.
Certainlypois2 posted that he has high lymphocytes percentage but low granulocytes percentage. What can all that mean? It would be good if someone with knowledge in immunology can decipher possible reasons for such parameters in correlation with orgasm/ejaculation?
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Hi quotz,
I see now that your testosterone levels are low. I have corrected my statement on http://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788
Hi Nas,
"Granulocyte" is just another name for "neutrophil". When neutrophil (granulocyte) levels are low and lymphocytes levels are normal, the "lymphocytes percentage" doesn't mean anything about lymphocytes levels. It just means that relative to (low) neutrophils, the lymphocytes seem high.
Hi Certainlypois2,
Thanks for posting your complete blood count (CBC) test. I updated the POIS-Neutropenia chart with your info:
(https://i.imgur.com/0V3N8dZ.png)
The above chart shows the prevalence of low neutrophil levels (neutropenia) for individuals in the United States of America (USA) according to ethnicity (Hispanic 0.38%, white 0.79%, black 4.5%) and individuals with POIS (60%) from this forum. The data for neutropenia in the USA was taken from "Prevalence of neutropenia in the U.S. population: age, sex, smoking status, and ethnic differences. (https://www.ncbi.nlm.nih.gov/m/pubmed/17404350/)"
The error bars (confidence intervals, sample errors) for the population samples were calculated using the population proportion estimate (https://en.wikipedia.org/wiki/Population_proportion) with a confidence interval of 90%. This means that we can be 90% confident that the real percent of POISers with neutropenia lies within those error bars. The previous error bars from the first chart (http://poiscenter.com/forums/index.php?topic=2695.msg24932#msg24932) was +-36%. The current error bar for our POIS data (with your data added) is +-25.4%. As more POISers post CBC test the error bars will decrease. I attached the Microsoft Excel file (neutropenia.xlsx) I used to calculate the chart. It does not contain macros or any scripted code, but it is always wise to use your preferred malware scanner when opening Microsoft Office documents.
More detained data from the neutropenia study cited above is shown here:
(https://i.imgur.com/SYuwq4y.png)
Hi All,
In order to make more progress and potentially find out what the neutrophil data means, we will also need infection data (i.e. EBV, CMV, Mycoplasma Pneumoniae). I made a list of some potential patterns in the data here (http://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788). Even if you don't believe POIS is caused by infection, you can still help us rule out possible causes and develop the necessary statistics by posting any infection data you have. Positive/abnormal and negative/normal test are all helpful and appreciated! :)
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I will measure my neutrophil count again in the future and this time before and after an orgasm, perhaps there is a change to be observed despite being in the normal range.
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nanna, I forgot to mention i did semen desensitization for about two years.
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@Simon66: Do you have postural intolerance, low blood pressure, tachycardia or autonomic dysfunctional related symptoms?
@aswinpras06: If they can't find the cause to your lung problems then perhaps they could look for inflammatory cytokines or your Th1/Th2 cytokine status. Mast cell mediators like prostaglandins is something they can test. High ECP is also associated with lung/asthma related symptoms.
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I think we're making alot of progress when it comes to individual tests. There is a growing evidence that POISers are suffering from an over active immune system.
Certainlypois2 posted that he has high lymphocytes percentage but low granulocytes percentage. What can all that mean? It would be good if someone with knowledge in immunology can decipher possible reasons for such parameters in correlation with orgasm/ejaculation?
@Nas,
I also had high lymphocytes and low granulocytes. I went to a specialist haematologist and she told me it just means that you have some kind of either bacterial or virus infection. My GP also said this too. I also had done bunch of other tests which I am gonna upload soon.
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@Muon; other poisfellows,
Month ago blood tests (IFA method) shows I have Mycoplasma Pneumoniae infection. The test showed only IgM reactive, while IgG negative. Did some course of antibiotics (azithromicyn) at 500 mg daily for 6 days, and a month after I retested again. The test still showed only IgM reactive, while IgG again negative. I retested recently again too, 6-7 weeks since initial diagnosis of the bacteria, and it still shows only IgM reactive, and IgG negative. Why am I not developing IgG positive response? Has anyone had any similar experiences? Docs are telling me different things, some are saying that I dont have a Mycoplasma Pneumoniae infection because in some cases IgM could be positive for up to a year after initial infection without any reason, and usually IgG develops in all the cases. Also, xray of my lungs indicate I have bronchitis. I am not a smoker or anything so the bronchitis has to be caused by an infection. What is going on?
Best,
Quotz
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That's weird quotz. What about PCR testing, have they tried that method yet?
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@Muon, Nope havent tried that method yet. I will try it in the following weeks.
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Hello Aswinpras06,
I think you have posted that comment in the wrong thread. Perhaps it's better to delete your last comment from the results thread and move the specific part about the bronchiectasis diagnose to your prior comment within that same thread (with editing).
Hi Muon
My doctors have diagnosed my condition as bronchiectasis based on ct scan and have given me asthma medications for 3 months until review. My ct scan report is there in my drop box folder. I will ask them about inflammatory cytokines,prostaglandins,High ECP and th1/th2 testing in my next review meeting.
https://www.dropbox.com/sh/5x2qmne0p3e1jnv/AACeKjqr6peSH5hWJdUhobqda?dl=0
What you can do as well is investigating IgG subclasses. Your total IgG is high so the sum of IgG subclasses might be high as well. With other words a specific IgG subclass might be responsible for your high IgG level. You need tests where they are able to measure high levels though because most of these tests are designed for low levels (deficiency).
I had one time for two weeks long asthma type symptoms as well. My doctor gave me:
flutiform
250 microgram/10 microgram
Dosis Aerosol, suspensie
fluticasonpropionaat/formoterolfumaraatdihydraat
I can't remember anymore how much times I applied (the freq of intake was related to the freq of flare ups) it per day, but it helped somewhat.
I also had for one whole week contstant coughing (it felt as if I had very dry lungs and inhaled air triggered the coughing, like it irritated the lungs somehow) and it resolved by itself. This was a total different situation than the asthma like symtoms were they gave me the medicine. The doctor ordered a scan for the lungs but they couldn't find anything unusual. POIS can trigger flare ups of lung symptoms in me but they are fairly short lived (bronchoconstriction or dilation???).
Could your enlarged mediastinal lymph nodes have anything to do with a dysfunctional adaptive immune system? https://en.wikipedia.org/wiki/Adaptive_immune_system
When is your next meeting, after those 3 months? It would be interesting to see what IgG subclass is elevated while your total IgG is high at the moment.
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Hi Nas,
Neutropenia (https://en.wikipedia.org/wiki/Neutropenia#Causes) (low neutrophil levels) is a rare condition. Hopeoneday mentioned (http://poiscenter.com/forums/index.php?topic=2695.msg24767#msg24767) that low neutrophil counts seemed to be a pattern in some of the POISer medical data. So I did a statistical analysis on the current data donated by POISers at "Gather and Post Here Your Medical Tests Results (http://poiscenter.com/forums/index.php?topic=2684.0)". This includes 5 POISers who have posted Complete Blood Count (CBC) count data. I excluded one POISer data set because the CBC test was taken during a non-chronic infection/disease (outlier). Here are the results so far:
(https://i.imgur.com/ryZ00rH.png)
The above chart shows the prevalence of low neutrophil levels (neutropenia) for individuals in the United States of America (USA) according to ethnicity (Hispanic 0.38%, white 0.79%, black 4.5%) and individuals with POIS (60%) from this forum. The data for neutropenia in the USA was taken from "Prevalence of neutropenia in the U.S. population: age, sex, smoking status, and ethnic differences. (https://www.ncbi.nlm.nih.gov/m/pubmed/17404350/)"
The error bars (confidence intervals, sample errors) for the population samples were calculated using the population proportion estimate (https://en.wikipedia.org/wiki/Population_proportion) with a confidence interval of 90%. This means that we can be 90% confident that the real percent of POISers with neutropenia lies within those error bars. But note that the confidence interval (error bars) for POISers and the general population do not overlap. This is a statistically significant result. The more POISers that submit their CBC test, the smaller the error bars will become and the closer we will get to the true probability of neutropenia among POISers. This could end up becoming the first bio-marker for this disease. But we need more data! A sample size greater than 10 people is ideal.
I would like to do this statistical analysis for other interesting parameters (http://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788) as well. But there is not enough medical data for those parameters to reduce confidence interval. In some cases, the sample size is only 1. In any case, thanks Nas for asking. I hope this answers your question.
Note (8/9/2018): I made a correction based on Quantum's suggestion (http://poiscenter.com/forums/index.php?topic=2683.msg24845#msg24845). I change the words "whole blood cell (WBC)" to the more accurate term "complete blood count (CBC)" in this post.
Nana, this is briliant. In day or two , i will put here some more sugestions and ideas, when i get out from brain fog.
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Hi Simon66,
Thanks for sharing your medical information. You mentioned that you had Lymphocytes tested.
Lymphocytes
CD3, CD4, CD8 all normal.
--------------------------------------------
You also mentioned that you had bacteria and virus infections tested. Usually, these blood test contain more information than what you have posted such as titer levels, ranges and lab notes. To do statistical analysis, we would need more information than the words "normal" and "negative" because these words don't give enough information to do pattern recognition (https://en.wikipedia.org/wiki/Pattern_recognition) or outlier detection (https://en.wikipedia.org/wiki/Anomaly_detection). Most of us who have posted our medical data (http://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787) have posted photos, screenshots and PDFs of our data. The images and PDFs of medical data that other POISers have submitted have also helped to insure that there is no publication bias (https://en.wikipedia.org/wiki/Publication_bias) in the information that they share.
Your willingness to share your information is appreciated. Since it seems that you have more information in your test about white blood cells, viral infections, hormones, etc... than what was shared, would you help us by sharing photos, screenshots or PDF images of the medical data that you reference in your medical information? This would be very helpful to quantify and compare your medical data with the data that others have shared. Moreover, outside researchers who may be viewing the medical data thread would feel more comfortable and more attracted to studying POIS if there are images of the medical data. There is a big movement right now in the scientific community to eliminate publication bias (http://science.sciencemag.org/content/345/6203/1502). So if we type out the test results by hand, scientist and doctors who view our medical data thread will want to know what information from the original data was left out (and why it was left out). Images of your data would help to validate the completeness and context of the information shared. In any case, thanks for being willing to share.
One final request. In order know the context of the information being shared on the medical data thread, a detailed description of symptoms is very helpful to all. A description of your symptoms not only helps to interpret your data, but it also helps others relate to the type of POIS that you have. You may have symptoms that other POISers have, but they may not have associated those symptoms with POIS until you share. You can help others learn more about their disease, and they may share and help you learn more about yours. Some examples of symptom descriptions can be found here (Muon (http://poiscenter.com/forums/index.php?topic=2545.msg22020#msg22020), nanna1 (http://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039)). Would you share with the POIS community your symptoms (chronic and post orgasm)? Thanks again for your contributions. :)
-
Hi guys, i will post here data who i am colect from here and NS to.
My idea is to find posible comon paterns from medical test results of poisers.
As we can so from small data we hawe one side of poisers hawe in comon alomoust 90%
same patern from test results, odher side the odher same results , etc...
My idea is also to Nana1 (thanks in advance) put colected data and posible
paterns in table("make a software") , in that tabele we can put test results of poisers wich hawe
the same patern, one side, odher side mix, "normal" etc...
-
Low ceruloplazmin
members -simon66
https://www.urmc.rochester.edu/encyclopedia/content.aspx?contenttypeid=167&contentid=ceruloplasmin_blood
(low ceruloplazmin could mean low in coper in seru or coper toxicity no bound coper)
Trouble speaking or swallowing
Tremors
Lack of coordination
Stiff muscles
Changes in behavior
Extreme tirednes
Etc...
Lapoisse
Low ceruloplasmin (at least 6 people from test results hawe low CP posible patern)
low CP not good coper bonding.
The post from lapoise:
Actually we don't have any common marker that could explain our symtoms .
No markers, no consideration from medical community. I got low testo,
I had 5 endocrino around me asking question, 2nd result came righ,
they don't even answer my calls. There is already at least 6 people that are low in CP ;
Low CP is problem with copper, problem with copper can be something else that Wilson.
Its really not a symtoms..low ceruloplasmin mean that you have copper hanging around
in your body an potentially making damage to you liver and brain.
Medical community about mineral, neurotransmitors, vitamin deficiency, etc :
forget about it, They know nothing about all that...and what is not know,
does'nt exist.For med in here if I don't have an organ faillure with blood test
come 10X the range, then I'm perfectly fine and get SSRI prescriped(wich will
probably make the problem worse).
So research is great of course, and I hope they will find something but I keep digging
myself anyway(and learning stuff meds don't know
Korean study - low testosterone hi estradiol
E2 (pg/mL) 86.98* 0?39.8
Prolactin (ng/mL) 1.09* 2.1?17.7
Testosterone (ng/dL) 10.49* 241?827
LH (mIU/mL) 8.03 1.5?9.3
FSH (mIU/mL) 17.15 1.4?18.1
Noticed igg3 low.
https://www.sciencedirect.com/science/article/pii/S2050116118300199
Iwillbeatthis
Low coper(probly serum)
Copper Result : 9.3 reference interval: 12.5-25
Maganese Result : 8.2 reference interval: 9-40
Zinc Result : 9.8 reference interval : 11.5-20
Red cell Magnesium : 1.99 reference interval: 2.08-3.00
B2 Result : 1.50 reference interval : <1.20 normal 1.20-1.30 borderline >1.30 deficient
Low coper(probly serum)
Simon66
Low coper, low celuloplazmin, hi cortisol, low testosterone, low T/shbg ratio,
low aminoacids and some of them complitly mising( posible patern for poisers).
Ceruloplasmin [serum - trace] 16.4 mg/dl 18 - 34
Copper [plasma] 13.3 umol/L 12.5 - 25.0
CORTISOL *688.000 nmol/l 133.00 - 537.00
TESTOSTERONE 12.7 nmol/L 7.6 - 31.4
Testosterone/SHBG Ratio * 15.1 24 - 104
joelawerence
low testosterone, liwer enzaym hi(could be patern for poisers), he olso have glucose probl
(glucose problems posible patern for poisers)...
Hi tsh(olso posible patern).
The results from this blood test are:
Testosterone : Very low - 5.8 (minimum threshold of 8.0)
although increased from last time because I took this test in
the morning as overnight fasting was needed for the glucose test
Blood Glucose : High - 7.0 (max threshold of 6.0 for fasting)
Liver enzymes : High (dont know the values)
Thyroid : Normal (dont know the values)
high TSH (Thyroid stimulating hormone)
-
Simulacruma
Low testosterone hi estradiol, high tsh, neurotransmiters low ( posible paterns)
Diagnosed for subclinical hypotharoisam -high tsh, normal t3 and t4 levels(posible patern)
subclinical hypotharoisam(posible patern for poisers).
Last week I had my total testosterone, free testosterone,
and estradiol checked.
My total testosterone and free testosterone are all significantly low,
and I am estrogen dominant.
Had neurotransmitter tests done a couple weeks ago,
and it stated that my norepinephrine, epinephrine, GABA, pea, glutamate, dopamine,
and serotonin were all low and below the normal 'feel good' range.
quotz
Low testosterone
- Low Testosterone levels 242 ng/dl, very low for a 21 year old.
lith65
Low testosterone
I yust got back from my doctors today after taking some blood work.
According to the tests, I'm at an extremely low level of testosterone.
259 L when he told me it should be around 800 for my age - I'm 21.
Green
low testosterone
I was referred to an Endocrinologist and although it was agreed that my testosterone
levels fell below the reference range 212 ng/dl (250-1100 ng/dl)
Investigator.
low white blod cels.
My doctor, looking at a bunch of lab tests, told me,
among other things, that my white blood cells are alittle low - for that,
it is better to be at cold temperatures,
this increases the amount of white blood cells.
Chrushgrapes
low testosterone , hi estradiol, low t/shgb ratio, hi DHT( dht posible patern for some poisers)
Labs
I used it to compared to one of member who used zrt lab test
named EDS for reference, last I read that he is on trt. There
are a list of users from Demografx with members who also uses trt,
I also saw Animus listed but looks like he did an operation?
But anyways here my test below,
Me @ 2-3 days after O
Testosterone (Saliva) 110 pg/mL 44-148 (Age Dependent)
Cortisol (Saliva) 2.4 L ng/mL 3.7-9.5 (morning)
Cortisol (Saliva) 2.2 ng/mL 1.2-3.0 (noon)
Cortisol (Saliva) 0.5 L ng/mL 0.6-1.9 (evening)
Cortisol (Saliva) 0.4 ng/mL 0.4-1.0 (night)
Estradiol (Blood Spot) 38 pg/mL 12-56
Testosterone (Blood Spot) 229 L ng/dL 400-1200 (Age Dependent)
Ratio: T/SHBG (Blood Spot) N/A .7 - 1.0
DHEAS (Blood Spot) 245 ?g/dL 70-325
SHBG (Blood Spot) <15 L nmol/L 15-50
PSA (Blood Spot) <0.5 ng/mL <0.5-4 (optimal 0.5-2)
Free T4 (Blood Spot)* 1.7 ng/dL 0.7-2.5
Free T3 (Blood Spot) 3.6 pg/mL 2.5-6.5
TSH (Blood Spot) 0.5 ?U/mL 0.5-3.0
TPOab (Blood Spot)* 20 IU/mL 0-150 (70-150 borderline)
As you can see my testosterone is low at 229, low SHBG,
upper range of estradiol. This is when I feel the worse
I have another lab where I have no sexy time for 3 months,
look below.
3 Month No O
Testosterone 337.3 ng/dL 249.0-836.0
TSH 0.76 uIU/mL 0.27-4.20
Cortisol AM 12.3 ug/dL 6.2-19.4
HGB A1C 5.7 % H 4.0-5.6
So it seems like my base testosterone is at low 300. High a1c,
normal cortisol. I still think my testosterone is too low but my
endocrinologist says otherwise. I weight 130 at 5'9.
My Saliva Test @ 2-3 days after O
17-OHP, SALIVA, AM 45.4 H 19.5 - 25.9 pg/ml
ANDROSTENEDIONE,SALIVA,AM 155 H 7 - 89 pg/ml
Here you see that my androstenedione or DHT is high. This
is probably why some people who O also have acne flares.
If you look at the acne.org forum, members also question does
sex/masturbation causes acne. What I read so far is that release
of prolactin also increases dht and that increase/cause acne.
I have another blood result coming up that includes wider spectrum
of different tests, I will update that once comes through.
EDS
15 minutes before ?O? at 10:00 pm ? result = normal @ 0.4 (range 0.4 ? 1.0)
15 minutes after at 10:45pm ? result = low @ 0.2 (range 1.2 ? 3.0)
The next morning - 9 hours after at 7:00 am ? result = low @ 3.3 (range 3.7 ? 9.5)
The next evening - 23 hours after at 9:00 pm ? result = low @ 0.1 (range 0.6 ? 1.9)
Estradiol ? result = high @ 58 (range 12 -56)
Testosterone ? result = low @ 342 (range 400 ? 1200)
Ratio T/SHBG ? result = low @ 0.3 (range 0.7 ? 1.0)
DHEAS ? result = normal @ 125 (range 70 ? 325
SHBG ? result = normal @ 36 (range 15 ? 50)
PSA ? result = normal @ 1.1 (range <0.5 ? 4)
Free T4 ? result = normal @ 0.7 ? 2.5)
Free T3 ? result = normal @ 3.4 (range 2.5 ? 6.5)
TSH ? result = normal @ 3.0 (range 0.5 ? 3.0)
TPO ? result = high @ 380 (range 0 ? 150 w/70 being borderline)
Lodewijkp
Low white blod cels, hyperinsulinemia with reactive hypoglycemia(sugar isues posible patern).
i have hyperinsulinemia with reactive hypoglycemia,
my endocrinologist told me it's likely caused by a rare disorder
but she stopped treating me because she had no idea what the underlying cause is.
insulin levels are high, they are 58 uIU/ml but my insulin sensitivity is good so
no diabetes. i got both symptoms from high insulin and reactive hypoglycemia.
another significant factor is that blood worked showed that i have
a shortage of white blood cells.
Twp06242014
Low testosterone.
He tested my blood for various specific things.
A few momths ago my regular doc tested my testosterone and it
came back a bit on the low side around 386 i think.
caveeater
low white blod cels, low vitamin d (low vitamine d posible patern in poisers).
I have Vitamin D defficiency and POIS. Im not sure if they are related or not.
I also have a low white blood cell count.
My doctor has given me a prescription for vitamin D and hopes this will
correct the low blood cell count.
lapoisse
low testosterone
I got low testo, I had 5 endocrino around me asking question,
2nd result came righ, they don't even answer my calls.
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Nas.car
Low testosterone
I also add that I have low testosterone and LH and FSH
levels below the normal, there is definitely something
wrong even in my pituitary gland .
Alessandro84
low testosterone, low free T olso
I also have normal-low testosterone and low levels of free testosterone.
He olso hawe digestive isues( posible patern in most poisers)
My worst symptom is stomach acidity (irritable bowel?) and I don't digest food...
At night I feel bloated and my heart rate is high (maybe because of air pressure).
FornicationDE
low testosterone, hi cortisol.
I am having low testosterone and light Cushing symptoms that make me feel weak.
Vicet m
general blod tests
Here is a general blood test result I got some months ago
from my GP while I was experiencing minimal POIS symptoms.
They didn't test testosterone unfortunately.
On the front it says "your 'inflamation, auto immune
' screen is negative." and it said everything was normal.
I didn't know how to read a lot of it.
White Blood Count 6.2K/UL 4.5-11.0
Red Blood Count 5.01M/UL 4.70-6.10
Hemoglobin 15.1 g/dl 14.0-18.0
Hematocrit 42.6% 42.0-52.0
MCV 85.0 fL 80.0-94.0
MCH 30.1 pg 27.0-34.0
MCHC 35.4 g/dl 32.0-36.0
RDW 12.3% 11.0-15.0
MPV 9.6 fL 7.4-10.4
Platelet Count 332 K/UL 150-450
Neut% 54.7% 42.0-75.0
Lym% 32.3% 15.0-40.0
Mono% 12.0% H 3.0-11.0
Eos% 0.5% 0.0-7.0
Baso% 0.3% 0.0-3.0
Neu# 3..3 K/mm3 1.5-7.7
Lym# 2.0 K/mm3 1.4-3.9
Mono# 0.7 K/mm3 0.2-1.0
Eos# 0.0 K/mm3 0.0-0.7
Baso# 0.0 K/mm3 0.0-0.3
IG% 0.2% 0.0-1.0
IG# 0.01 K/mm3 0.00-0.10
Test Name Result Flag Reference
Sed Rate 5 mm/hr 1-15
NA 138.0 mmoI/L 137.0-145.0
K 3.70 mmoI/L 3.60-5.30
Cl 97.0 mmoI/L L 98.0-110.0
CO2 26.0 mmoI/L 22.0-32.0
Glucose 88 mg/dl 65-99
BUN 16.0 mg/dl 7.0-23.0
Crea 1.00 mg/dl 0.70-1.30
Ca 9.6 mg/dl 0.70-1.30
Total Protein 8.80 g/dl H 6.30-8.20
AlbuminP 5.40 g/dl H 3.50-5.00
AST 25 iu/l 15-46
Alkaline Phosphase 61 iu/l 38-126
ALT 7 iu/l L 13-69
T. Bilirubin 1.20 mg/dl 0.20-1.30
cGFR-AA >60 ML/MIN/1.7 60-125mL/min/1.73m/S/2
cGFR-O >60 ML/MIN/1.7 60-125mL/min/1.73m/S/2
Observer
Well, I have the first part of my blood test results(made some weeks ago).
I have asked for a broad study, and it seems that the second part is coming later.
The summary is: Nothing wrong. Everything is perfect!
All blood test results related to the liver function are OK,
moreover, they are better than the first blood test I got
prior to the use of the Niacin, a year ago, when I got some
higher results (AST, ALT and GGT). i will post the values of some parameters:
VIT B 9 PHOLIC ACID - 5 ng/mL [3-20]
VIT B 12 - 441,40 pg/mL [200-950]
Testosterone 6,83 ng/ml [2.80-11.99]
Free Testosterone 11,67 ng/dL [4.70-24.40]
Bioavailable Testosterone 387 ng/dL [130-681]
I got probably higher results regarding the liver
function because i made heavy exercise the days before
after long time without exercising, this is what my Dr. thinks.
Habibou
A lot of abnormality from tests.
-Ig M = 249% 260% (of the normal avergave)
-Ig G = 99% 90%
-Ig A = 49% 60%
-Ig E = 190%
C3 = 124% 98%
C4 = 73% 42%
January
-adrenaline <0.50 nmol/l < 1.00
-noradrenaline 8.53 nmol/l < 4.00 1443 ng/l < 675
-dopamine <0.50 nmol/l <1.00
Unrina :
-adrenaline 0.02 umol/l < 0.10
-noradrenaline 0.42 umol/l < 0.50
-dopamine 1.34 umol/l < 3.00
All the blood tests were done 2 hours after an O.
The red standards are the unusual ones !
Last blood tests abnormal standards (with an 2 O 12 and 10 hours before)
June
TGMH 33.3 pg (27.0 - 32.0)
VMP 10.3 fl (6.0 - 10.0)
Reticulocytes 30 giga/l (50 - 100)
Phosphatase alkalines 128 U/l (37 - 111)
Cholesterol 4.04 mmol/l (4.40 - 6.45)
Albumin 48.6 g/l (38.0 - 46.0)
November 2011
D Vitamin = 10 ng/ml (30 -100)
Hoping
From what is he tested- all normal.
I am an active, healthy, 26-year-old American male.
Unfortunately, all of my tests were in the normal range.
(O within 24-48 hours of testing. I can't remember exactly)
Test Result Normal Range
Glucose 85 65-99
Urea Nitrogen 12 7-25
Creatinine 1.16 0.80-1.30
Sodium 141 135-146
Potassium 4.3 3.5-5.3
Chloride 103 98-110
Carbon dioxide 27 21-33
Calcium 9.8 8.6-10.2
Protein, total 7.2 6.2-8.3
Albumin 4.8 3.6-5.1
Globulin 2.4 2.1-3.7
Bilirubin 1.0 0.2-1.2
Alkaline Phosphatase 55 40-115
AST 18 10-40
ALT 17 9-60
Testosterone Test
Result Normal Range
Testosterone, 666 250-1100
total, LC/MS/MS
Testosterone, free 119.0 35.0-155.0
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Demografx
low testosterone hi prolactin
I took a blood test one week after release, POIS-free.
My endocrinologist comments on my hormone test results:
"Your testosterone concentration is low and prolactin is high.
If I cannot explain it by the medications/supplements you were taking I'll
want to schedule an MRI of your pituitary gland."
-
Yohhn 21 from NS
Hi hawy metals
Here are my (out of range) results from a heavy metals urine test:
Unprovoked:
Mercury => High Normal
Nickel => Very High
Lead => Normal
Provoked:
Mercury => High
Nickel => Very High
Lead => High
NOTE_Kurtosis sed that several member who sent tests to him hawe low glutation.
Several POISers who sent me their medical results had low glutathione.
Glutathione is increased by unblocking the methylation cycle,
consuming methylated folates, N-Acetyl Cysteine and other methyl
donors such as sulphur-containing amino acids like taurine,
methionine & its derivative SAM-e. Glutathione binds to heavy metals
and enables their excretion.
-
EDS from NS forum
Low testosterone , hi estradiol, low t/shbg ratio, tpo hi (posible autoimune tayroid)...
As promised, I am reporting back on the tests I had run with ZRT Labs.
I selected the ?Comprehensive Male Profile II? that includes saliva and blood spot testing.
I tested Cortisol in the following manner:
15 minutes before ?O? at 10:00 pm ? result = normal @ 0.4 (range 0.4 ? 1.0)
15 minutes after at 10:45pm ? result = low @ 0.2 (range 1.2 ? 3.0)
The next morning - 9 hours after at 7:00 am ? result = low @ 3.3 (range 3.7 ? 9.5)
The next evening - 23 hours after at 9:00 pm ? result = low @ 0.1 (range 0.6 ? 1.9)
I sampled the blood spots 33 hours after ?O? so I knew it would be as bad as it gets for me.
The blood tests results were as follows:
Estradiol ? result = high @ 58 (range 12 -56)
Testosterone ? result = low @ 342 (range 400 ? 1200)
Ratio T/SHBG ? result = low @ 0.3 (range 0.7 ? 1.0)
DHEAS ? result = normal @ 125 (range 70 ? 325
SHBG ? result = normal @ 36 (range 15 ? 50)
PSA ? result = normal @ 1.1 (range <0.5 ? 4)
Free T4 ? result = normal @ 0.7 ? 2.5)
Free T3 ? result = normal @ 3.4 (range 2.5 ? 6.5)
TSH ? result = normal @ 3.0 (range 0.5 ? 3.0)
TPO ? result = high @ 380 (range 0 ? 150 w/70 being borderline)
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Robb23 from NS
Low testosterone, low shbg, low white blod cels, hi prolactin.
I took some blood tests last year and discovered I had low total testosterone,
407 ng/dl on a scale of 400-1080 ng/dl. Results from two later tests were even lower,
9.056 nmol/L and 9.682 nmol/L (on a scale of 6.07-27.1 nmol/L).
Doctors said these levels were all "within normal range" but they look very low to me.
Also low were SHBG (19 nmol/L scale 11-80 nmol/L), E2 (68.00 pmol/L scale 73.40-275.25 pmol/L),
and my white blood cell count (4.5 x10^3/uL on a scale of 4.8-10.0 x10^3/uL).
Prolactin was high (261.59 mIU/L scale 55.97-278.36 mIU/L). TSH was 2.5 uIU/ML
(scale 0.35-6.00 uIU/ML) and later 1.780 uIU/ML (scale 0.27-4.2 uIU/ML).
Acronaym from NS
Low white blod cels neutrophils, diagnosed lyme disease
I do have an irregular immune system though.
What I do have is Lymphopenia with reduced Neutrophils,
T Cells and Lymphocytes. The doctors did not do anything about
it as I hardly ever get any infections anymore (which is weird
in that now I never get a cold) so they seem to think the lower
numbers are coping well. I was diagnosed with Lyme disease earlier this year,
so that supposedly might explain my irregular lymphocyte subsets.
As for STD, I got POIS before I had sex in my teens and I feel
that is the same situation for quite a few others here.
It is not an STD. I have had STD checks done in past years and came back clear.
-
Jferr from NS
Wbc count in lower range
Pregnenolone: 196, (55-455)
Growth Hormone: 4.16, (0.01-0.97) Very High
Free Insulin: 2.2 Micro IU/mL, (1.4-14)
Catecholamines
Norepinephrine: 271 pg/mL, [(70-750) - supine] [(200-1700) - standing]
Epinephrine: 18 pg/mL, [(Undetectable-110) - supine] [(Undetectable-140) - standing]
Dopamine: <10 pg/mL, (<30 no postural change) <---? Confused me
Free T3: 3.4 pg/mL, (2.5-3.9)
Follicle Stimlating Hormone: 1.6mIU/mL, (1.3 - 19.3) Lower End
DHEA: 3.2 ng/mL, (<13)
Progesterone: 1.07 ng/mL, (0.1-0.8) High
Prolactin: 6.2 ng/mL, (2.6 - 13.1)
Vitamin B12: 560 pg/ml, (180 - 914)
Folic Acid: >20 ng/ml, (3.0-20) Mildly High
Cortisol, PM: 14.6 ug/dL, (3.1 - 16.7)
Total Testosterone: 422 ng/dL, (175 - 781)
Thyroid Tests
TSH: 2.64 uIU/mL, (0.34 - 5.60)
ESR: 1 mm/Hr, (0 - 15) Mildly High
CBC
WBC: 5.8 1000/uL, (4.5 - 11.0)
RBC 5.33 MiL/uL, (4.20 - 5.80)
Hemoglobin: 14 g/dL, (13.1 - 17.1)
Hematocrit: 43.4 %, (40 - 51)
MCV: 81.4 fL, (80 - 100)
MCH: 26.3 pG, (27 - 34) Low
MCHC: 32.4 g/dL, (31.0 - 36.0)
RDW: 13.5 %, (11.5 - 14.5)
Platelet Count: 164 1000/uL, (140 - 400)
Lymphocytes: 24.0 %, (17.0 - 40.0)
Neutrophils: 67.2 %, (48.0 - 75.0)
Monocytes: 6.3 %, (0.0 - 14.0)
Eosinophilis: 1.9 %, (0.0 - 5.0)
Basophils: 0.6 %, (0.0 - 3.0)
CMP
NA: 139 mmol/L, (136 - 145)
K: 4.1 mmol/L, (3.5 - 5.3)
CL: 102 mmol/L, (98 - 107)
CO2: 28 mmol/L, (22 - 32)
Calcium: 9.4 mg/dL, (8.4 - 10.2)
Bun: 16 mg/dL, (7 - 26)
Creatinine: 0.90 mg/dL, (0.60 - 1.30)
eGFR: 110 mL/mi/1.73 sq m, (>60)
Bun/Creatinine Ratio: 17.8
Glucose: 88 mg/dL, (70 - 105)
Total Protein: 7.8 g/dL, (6.5 - 8.3)
Albumin: 4.4 g/dL, (3.5 - 5.0)
Globulin: 3.4 g/dL
A/G Ratio:
Total Bilirubin: 0.4 mg/dL, (0.2 - 1.2)
Alkaline Phos: 85 IU/L, (32 - 92)
ALT (SGPT): 16 IU/L, (10 - 40)
AST (SGOT): 22 IU/L, (10 - 42)
Lipid Profile
Triglycerides: 39 mg/dL, (35 - 160) Mildly Low
Chloresterol: 132 mg/dL, (100 - 200)
HDL: 42 mg/dL, (29 - 71)
LDL (Calculation): 82 mg/dL, (62 - 130)
Glycohemoglobulin: 5.7, (0.0 - 5.9) Mildly High
Thyroid Tests 2
T3 Uptake: 41.30 %, (32.00 - 48.40)
T4: 9.69 ug/dL, (6.09 - 12.23)
FTI: 4.0
Total T3L 131.12 ng/dL, (87.00 - 178.00)
These tests were taken the morning after orgasm when I'm usually feeling worst.
I do want to mention that I lift 4 days a week or so and also take protein after
my workout, I'm not sure if that could have affected these results. I'm not sure
if there are important things that I did not test for such as other hormones or
amino acids, but I tested for quite a bit. Any comments or suggestions are welcomed
and appreciated.
-
CertainlyPOIS from NS
Hi acth, total t in lower side.
doctor was ****** about it
said i shouldnot worry about high ACTH because cortisol is not low.
DID TEST AT AROUND 1-30PM IT WAS ORDERED 1;25PM
results ref
cortiosl 14 AM 4-22 UG/DL PM 3-17 UG/DL
FREE T3 4.0 2.3 -4.2 PG/ML
FREE T4 1.45 .71-1.85 NG/DL
TSH 1.523 .35 - 5.50 uIU/ml
FSH .8 1 - 12 miu/ml
lh 4.3 2-12 miu/ml 19- 50
prolactin 8.4 3-20 ng/ml
ACTH 60.0 am 9 - 52 pm 4-35 pg/ml
thyroid peroxidase antibody <10 0 -35 Iu/ml
Testosterone i have two different results, dont know why
first
F test 111 47 -244 pg/ml
% F test 2.5 1.6- 2.9
total test 446 280 - 1070 ng/dl
shbg 23 13 -71 nmol/l
dhea 15.0 dont know range
other testorone
testosterone 431 400 - 1080 ng/dl
shbg 27 11 -80 nmol/l
testosterone bioavailable 249.5 130.0 - 680.0
testosterone, free 87.76 47.0 - 244.0 pg/ml
estrone 21.8 9-36 pg/ml
Martin88 from ns
Hi Acth, elevated creatine( posible patern)
New tests results:
From the same batch I have made few weeks ago :
(POIS day 3, early in the morning, blood test in hospital)
ACTH 16.0 (2.0-11.0) pmol/L , I was surprised by this one,
I don't know how to interpret this result..
Cortisol : 533 (138-690)nmol/L
(POIS day 3, 24h urine test in hospital)
Creatinine 17.3 (7.1-15.9) MMOL/D
Cortisol, I'll repor
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The idea is to put all comon paterns and posible paterns in tabele.
I aplaugue to Nana1 ; )
Repeat:
Hi guys, i will post here data who i am colect from here and NS to.
My idea is to find posible comon paterns from medical test results of poisers.
As we can so from small data we hawe one side of poisers hawe in comon alomoust 90%
same patern from test results, odher side the odher same results , etc...
My idea is also to Nana1 (thanks in advance) put colected data and posible
paterns in table("make a software") , in that tabele we can put test results of poisers wich hawe
the same patern, one side, odher side mix, "normal" etc...
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Thanks for your effort HOD,
It really seems that low testosterone is a common denominator in many of these tests results.
Hmmm, wonder why?
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Nas, treating my testosterone deficiency has been the key to my POIS progress for the last 10 years.
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Hi All,
I have updated my medical data post with new hormone test (testosterone, estrogen, progesterone, luteinizing hormone)(see 6. Hormone Tests (Thyroid and Steroid) and B12 (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039) section of that post).
I also took a new bacteria infection test IgG for Toxoplasma gondii (see 4. Virus and bacteria test abnormal (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039) section of that post). The summary of the data is listed at the bottom of the post.
My medical data is listed on the Gather and Post Here Your Medical Tests Results (https://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052) thread.
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My vitamin B12 and my vitamin D used to be low. Vitamin D was 18.
My TRT is low. Hemotology is a bit low. Free T4 is a bit low. Before I knew I had POIS I tried Levothyroxine for the low T4. But I didn’t feel any better.
Triglycerides is high. Iron and cortisol are too high. Also cholesterol is a bit high. But since a few months I lost 13 pounds.
Bloodtest Vandemolen (I combined a few bloodtest in the last years because not all things were test in 1 blood test)
Hemotolpgy
ESR: 3. Reference range (RR)0-15
Hemaglobin: 8.7. RR: 8.5-11
Hematocrit: 0.40. RR: 0.40-0.50
Mean Corpuscular Volume: 82. RR: 80-100
Erythocytes: 4.89. RR: 4.50-5.50
Trombocytes: 6.0. RR: 6.0
Leucocytes: 6.1 (in 2016). RR: 4.0-10.0
Ferritin: 54. RR: 25-250
Clininal Chemie
Urea: 3.5 (in 2016). RR: 2.5-6.5
Creatinine: 65. RR: 64-104
eGFR (MDRD): higher than 60. RR: higher than 60
eGFR (CKD-EPI): higher than 90. RR: higher than 90
Natrium: 141. RR: 135-145
Calcium: 2.29. RR: 2.15-2.60
Magnesium: 0.95 (in 2016). RR: 0.70-1.00
Uric acid: 0.37. RR: 0.20-0.38
ASAT: 21. RR: 0-34
ALAT: 12. RR: 0-44
Alkaline Phosphoatase: 49. RR: 40-120
gammaGT: 16. RR: 0-54
Tryptase: 4.6. RR: 0-11.4
Triglycerides: 2.4 (in 2016). RR: 0-2.0
Glucose: 5 (in 2016). RR: 4-6
Vitamin D (25-OH): 160. RR: 71.0-156.2
Iron: 13. RR: 14-30
Transferrin: 2.3. RR: 2-4
Cholesterol: 5.7. RR: less than 5.0
LDL cholesterol: 3.6. RR: less than 2.5
HDL cholesterol: 1.0. RR: less than 1.0
Endocrinology
TSH: 2.7. RR: 0.55-4.8
Free T4: 11 (in 2011). RR: 10-19
Cortisol: 0.19. RR: 0.03
Testosterone: 9.6 (in 2016). RR: 10-30
Free testosterone: 378 (in 2011). RR: 174-729
SHBG: 12 (in 2011). RR: 13-71
DHEA-S: 7.0. RR: 2.6-14
PSA: 2.3 (in 2016). RR: 0-2.0
Immonology
iGe: 64 (in 2015). RR: 1-90
t-TransGlut IgA: less than 1 (in 2011). RR: 0-5
Prolactin: 0.29 (in 2011). RR: 0-0.32
Progestrone: 1.8 (in 2010). RR: 0.7-4.3
HCG + beta: less than 1 (in 2011). RR: 0-1
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Hello everyone, it's been a while since I wrote in the forum. lately I'm going through a bad situation. Around the month of May I started to see an immunologist. just before going to see him. Someone from this forum recommended me to try celecoxib. And the truth is that with celecoxib I was finding myself better and better. I already had about 40 days with celecoxib, when the immunologist asked me to continue spacing a little in time each shot, to gradually reduce the celecoxib. for example alternating a day yes a day no. And to start taking a drug that in my country is marketed under the name of dolquine, whose active ingredient is hydroxychloroquine sulfate. When I started with the dolquine, I only took 200 MG a day. for 15 days. and during those 15 days I was alternating celecoxib one day yes a day no. to reduce my intake. When I completed the 15 days, I completely stopped celecoxib. And I increased the daily dose of dolquine to 400 mg a day. I was also detected by the immunologist that my vitamin D3 level was a little low. So he decided to take drinkable ampoules every 15 days of vitamin D3. for 3 months. just the time he asked me to try the dolquine. At the same time all this. I was trying to stay in abstinence as long as possible. I had not had any ejaculation for a long time. A few days after starting to take the dolquine. I do not know exactly how many, but there would not be many. Let's say about 10 days. I had an ejaculation. and to my surprise, I did not have any symptoms of POIS, I thought it was due to the use of dolquine. but then one month and a few days later. I had another. and on this second occasion. Yes, the symptoms manifested with enough force in fact.
Dolquine is supposed to treat autoinmune deseases such as lupus and rheumatoid arthritis.
The fact is that my POIS has taken a very strange course. Since I rode a sleigh at the end of last February. the snow was as hard as ice. and when riding I had to suffer some blows, neither too strong. nothing to cause some kind of trauma. In fact ... for more medical oscultations they did to me, everything was apparently fine. I had a pelvic magnetic resonance and only slight signs of a prostatitis were seen.
the case is that following that. my POIS has me in check. since from that event of the blows in the pelvic area, I began to notice that every time I sat down. the symptoms of POIS appeared only because of the simple fact of sitting down.
some of the symptoms. maybe not all.
but it was getting up and those unpleasant symptoms were dissipating little by little ... I sat down again ... and slowly they came back with more and more strength, that is to say that they were increasing ... until the sensation It was so unpleasant that I was forced to get up.
Eventually I ended up realizing that the area of ??the body that activated these symptoms by simple pressure was the perineal and testicular area.
the problem that I have now since the last ejaculation that I had, that as I tell you, it was clearly manifested. What has caused me is that the area of ??my body that activates these symptoms of POIS by the simple pressure exerted by my own weight. It has spread from the perineal area to the buttocks and lower back. With which, I am in a very difficult and worrisome situation.
the situation is getting quite complicated for me. to such an extent that every time I have less mobility. because I took a long walk recently to get an MRI of my lower back. and now for that long journey in public transport (to avoid sitting) has caused me to also worse walking. With which, every time I can walk less. I can not sit down throw me out, I do it with many difficulties. all this is getting more and more complicated. POIS usually does not attend like this. but for some strange reason from those blows in my pelvic area after riding in sledges, my POIS has me more and more cornered. possibly someone thinks that this is not POIS. but the truth is that before that day of riding a sleigh. everything was triggered only with ejaculation or presence of pre-seminal fluid. and clearly I have worsened considerably since my last cumshot. Does anyone think of how all this is possible?
Does anyone know of a POIS case that has taken a similar course?
Any help or suggestion will be welcome.
Thank you very much partners.
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I have uploaded heart rate and blood pressure measurements. You can find them over here (https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0&preview=Muon+5-2+HR+and+BP+data.docx). This has been measured during the summer of 2013 when POTS, cardiovascular and autonomic function related symptoms where at their peak. A few times measurements have been repeated on multiple healthy (read non POTS) humans to rule out device related issues. The second page has some notes in Dutch which you can translate yourself, if not ask me.
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Here: https://poiscenter.com/forums/index.php?topic=2684.msg25692#msg25692
I did a testosterone and estradiol teat and both came out normal.
This is quite disappointing :( since I had high hopes that testosterone ( being the factor that is shared between many POISers ) would be the end of this god forsaken illness but no, my testosterone in fact came normal high. This kinda demorilized me but I'm not giving up, any suggestions for futher tests? Maybe other testosterone related illnesses. Perhaps after ejaculation testosterone plumits? ( I tested after about 5 days of orgasm )
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Here: https://poiscenter.com/forums/index.php?topic=2684.msg25692#msg25692
I did a testosterone and estradiol teat and both came out normal.
This is quite disappointing :( since I had high hopes that testosterone ( being the factor that is shared between many POISers ) would be the end of this god forsaken illness but no, my testosterone in fact came normal high. This kinda demorilized me but I'm not giving up, any suggestions for futher tests? Maybe other testosterone related illnesses. Perhaps after ejaculation testosterone plumits? ( I tested after about 5 days of orgasm )
I’ve had a theory for some time that TRT can possibly help some POISers with normal testosterone levels. HOWEVER, I AM NOT RECOMMENDING THIS DUE TO THE POTENTIALLY DANGEROUS SIDE EFFECTS. I contacted the manufacturer of my testosterone to conduct medical studies along those lines, but the discussions didn’t go anywhere.
If you’re interested in being a guinea pig, you could possibly find a TRUSTED endocrinologist who might work with you. As a SAFE guinea pig!
I’m not sure of the legality of a doctor’s experimenting this way, with a normal-testosterone-level patient!
One of our normal-testosterone-level forum members tried it (WITHOUT medical supervision!) and decided to report the results to me personally: it didn’t work. He got bad (but not terrible) reactions. He also had a big increase in libido, which as you can imagine...also backfired on him.
Safety first!
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Here: https://poiscenter.com/forums/index.php?topic=2684.msg25692#msg25692
I did a testosterone and estradiol teat and both came out normal.
This is quite disappointing :( since I had high hopes that testosterone ( being the factor that is shared between many POISers ) would be the end of this god forsaken illness but no, my testosterone in fact came normal high. This kinda demorilized me but I'm not giving up, any suggestions for futher tests? Maybe other testosterone related illnesses. Perhaps after ejaculation testosterone plumits? ( I tested after about 5 days of orgasm )
See it on the positive side. You should be happy that your Testosterone is normal high. Because low T. also gives symptoms out of POIS. I am now taking Clomid because my low T, but the side effects are a bit heavy. Espacially the hot flushes. I understand why you are disappointed, but has many faces. For one niacine helps, for the other Taurine. You just have to try things (vitamins) what helped others, but be carefull and go to a doctor when you want try medicines.
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Here: https://poiscenter.com/forums/index.php?topic=2684.msg25692#msg25692
I did a testosterone and estradiol teat and both came out normal.
This is quite disappointing :( since I had high hopes that testosterone ( being the factor that is shared between many POISers ) would be the end of this god forsaken illness but no, my testosterone in fact came normal high. This kinda demorilized me but I'm not giving up, any suggestions for futher tests? Maybe other testosterone related illnesses. Perhaps after ejaculation testosterone plumits? ( I tested after about 5 days of orgasm )
In what situation are you with your doctor at the moment? Does your GP know about POIS or is discussing this issue out of the question? He/she could take a look at the results thread. I'm expecting new results this month, there was some delay. Also my GP agreed on getting ECP tested before and after ejaculation but the hospital wouldn't let me so there are talks going on to get this done. I hope this will be sorted out, if not, then I'm heading out to Germany again. I'm not sure when to test it for the 3rd time point. I read articles which state peak times of 6-8 hour, 8-12 hour and even 24 hour after exposure depending on the type of disease. There are also short phase reactions possible. You can wait for my ECP results and if that's turning out positive you can think about getting that tested.
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Here: https://poiscenter.com/forums/index.php?topic=2684.msg25692#msg25692
I did a testosterone and estradiol teat and both came out normal.
This is quite disappointing :( since I had high hopes that testosterone ( being the factor that is shared between many POISers ) would be the end of this god forsaken illness but no, my testosterone in fact came normal high. This kinda demorilized me but I'm not giving up, any suggestions for futher tests? Maybe other testosterone related illnesses. Perhaps after ejaculation testosterone plumits? ( I tested after about 5 days of orgasm )
In what situation are you with your doctor at the moment? Does your GP know about POIS or is discussing this issue out of the question? He/she could take a look at the results thread. I'm expecting new results this month, there was some delay. Also my GP agreed on getting ECP tested before and after ejaculation but the hospital wouldn't let me so there are talks going on to get this done. I hope this will be sorted out, if not, then I'm heading out to Germany again. I'm not sure when to test it for the 3rd time point. I read articles which state peak times of 6-8 hour, 8-12 hour and even 24 hour after exposure depending on the type of disease. There are also short phase reactions possible. You can wait for my ECP results and if that's turning out positive you can think about getting that tested.
Deal, in the mean time I'll probably do a WBC test. I'm looking to do it this Sunday.
The doctor is my cousin and yes I did tell her about POIS, she doesn't quite believe in it but she does give me the benefit of the doubt.
She doesn't charge me anything actually she even refuses that I pay for the tests ( quite embarrassing actually ). Could be a good opportunity economically to do further tests.
I got to say though, why ECG, like, why is that relevant?
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I don't know if it's relevant but there are several reasons why I want to explore for Eosinophil cationic protein:
1) My brother has it elevated and he got POIS so why not check it for myself. He also has elevated Lp-PLA2 activity which could indicate endothelial inflammation. ECP could play a role in damaging endothelial cells: http://www.em-consulte.com/en/article/797260
2) MCAS is hard to prove. Mast cells are known for cross reacting with eosinophils, so ECP which is unique to eosinophils could be an indirect indication of mast cell activation.
3) Some folks on this forum have an elevated eosinophil count (which I suspect is caused by mast cell-driven activation of eosinophils via prostaglandins or IL-5). Activated eosinophils are able to survive longer than they normally would which could bring numbers up.
4) They play a role in non-IgE mediated allergies.
I haven't looked into endothelial cell related parameters yet, which is also on my mind. Last week was a crazy week for me with a lot of heart rate problems but today it goes very well including POIS, temperature this night dropped close to freezing point which is beneficial for me and overall health is trending towards a better state at the moment. I wonder if I even should do tests in this situation which makes testing quite frustrating. By the way you could also try testing for IL-8 but the problem with that is, it's not unique. There are tons of cell types producing this so it's hard to pinpoint a potential source unlike ECP.
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I don't know if it's relevant but there are several reasons why I want to explore for Eosinophil cationic protein:
1) My brother has it elevated and he got POIS so why not check it for myself. He also has elevated Lp-PLA2 activity which could indicate endothelial inflammation. ECP could play a role in damaging endothelial cells: http://www.em-consulte.com/en/article/797260
2) MCAS is hard to prove. Mast cells are known for cross reacting with eosinophils, so ECP which is unique to eosinophils could be an indirect indication of mast cell activation.
3) Some folks on this forum have an elevated eosinophil count (which I suspect is caused by mast cell-driven activation of eosinophils via prostaglandins or IL-5). Activated eosinophils are able to survive longer than they normally would which could bring numbers up.
4) They play a role in non-IgE mediated allergies.
I haven't looked into endothelial cell related parameters yet, which is also on my mind. Last week was a crazy week for me with a lot of heart rate problems but today it goes very well including POIS, temperature this night dropped close to freezing point which is beneficial for me and overall health is trending towards a better state at the moment. I wonder if I even should do tests in this situation which makes testing quite frustrating. By the way you could also try testing for IL-8 but the problem with that is, it's not unique. There are tons of cell types producing this so it's hard to pinpoint a potential source unlike ECP.
Does tour brother has POIS? Too bad. But it’s an interesting case. My two brothers don’t have POIS, but they both have Crohn’s disease. Just like POIS there is something wrong with their immune system.
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I also think inmune system it's somehow linked to POIS. But I begin to think that also neurologic system and also posibly hormonal system too.
Apart from that, we have very different things among those of us who suffer POIS. In my case for instance, I don't have high eosinophils. It is very difficult to find a commun source problem for POIS. Is there something in common for all of us who suffer from POIS?
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I don't know if it's relevant but there are several reasons why I want to explore for Eosinophil cationic protein:
1) My brother has it elevated and he got POIS so why not check it for myself. He also has elevated Lp-PLA2 activity which could indicate endothelial inflammation. ECP could play a role in damaging endothelial cells: http://www.em-consulte.com/en/article/797260
2) MCAS is hard to prove. Mast cells are known for cross reacting with eosinophils, so ECP which is unique to eosinophils could be an indirect indication of mast cell activation.
3) Some folks on this forum have an elevated eosinophil count (which I suspect is caused by mast cell-driven activation of eosinophils via prostaglandins or IL-5). Activated eosinophils are able to survive longer than they normally would which could bring numbers up.
4) They play a role in non-IgE mediated allergies.
I haven't looked into endothelial cell related parameters yet, which is also on my mind. Last week was a crazy week for me with a lot of heart rate problems but today it goes very well including POIS, temperature this night dropped close to freezing point which is beneficial for me and overall health is trending towards a better state at the moment. I wonder if I even should do tests in this situation which makes testing quite frustrating. By the way you could also try testing for IL-8 but the problem with that is, it's not unique. There are tons of cell types producing this so it's hard to pinpoint a potential source unlike ECP.
Does tour brother has POIS? Too bad. But it’s an interesting case. My two brothers don’t have POIS, but they both have Crohn’s disease. Just like POIS there is something wrong with their immune system.
Hmmmm, Crohn disease you say.
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I also think inmune system it's somehow linked to POIS. But I begin to think that also neurologic system and also posibly hormonal system too.
Apart from that, we have very different things among those of us who suffer POIS. In my case for instance, I don't have high eosinophils. It is very difficult to find a commun source problem for POIS. Is there something in common for all of us who suffer from POIS?
Besides illness post orgasm no, but there are common patterns.
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Yes, that is apparently the only thing. Although I think that in my case as in other folks it is something more related or triggered by an emission. Both seminal and pre-seminal fluids. That is to say that orgasm is not strictly necessary.
I totally agree with Quantum when he said it should perhaps be called PEIS instead of POIS. Post Emission Illness Syndrome.
And indeed, all my symptoms are common to many folks in this forum.
Well, everything but a very strange thing that is happening to me since I rode a sleigh. Which is causing my POIS to be activated in addition to an emission by exerting pressure on the perineal and testicular area. And that zone has been extended even more as a result of the last emission I had. that is, it is true that everything gets worse with emissions.
But what is happening to me with the pressure in certain areas of my body, I do not know anyone who happens to him. I've only heard of someone who after having a vasectomy started not being able to sit down. and maybe other cases of chronic pelvic pain ... but it still seems very strange to me.
It's something that catches my attention very much.
How is that possible that exerting some pressure on certain areas so that POIS is activated without the need for an emission? .... Could that be one more clue about this disease? ... or just brings more confusion?
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How is that possible that exerting some pressure on certain areas so that POIS is activated without the need for an emission? .... Could that be one more clue about this disease? ... or just brings more confusion?
People with mast cell activation disorders can have mechanical pressure as a trigger for their symptoms so this doesn't surprise me.
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Fernab, small infection and patogen relase from prostate or glands can do that.
And those senzations and symptomes you discraybing i hawe it to, i think it is nerve isue.
I cant realase to this day what is the reason to disturb nerves so hard to became hipersenzibile,
and for me that manifes ewan in breathing isues, i can fell the inflamation in the spine erea, betwean sholders
where nerwes fiber pasing tru and make you lung breathing, and lower back erea under prostate.
That manifest like broken robot in me if i force my body and my nerwes cant fire properly in that erea,
the senzation is like something is cloged there an you must stop rest to surviwe.
Me personaly think that patogens like cronic lyme disiese and his coinfetions who cant be
diagnosed in big myority of peoples, ewan CFG peoples is conectet to this.
I am wery senzitiwe to hi temperatures, an that is hermax reaction similar to pois, an that mean
that my body relase endotoxins. Probbly genetic mutations and i cant get rid of them out of body.
Thats why for some poisers mthfr bipas work , it incriese glutation, main body detox system.
Some people, me to also , some time hawe pois on arosaul only an sexual stimulation only,
an here i personaly think that hapen smal hermix endotoxin reaction, similar to exercise intoleance
because temperature of body rise, patogens start dying of...
Patogens in cronic lyme patients exist in brain to, and on stimulant an arosaul, body starting
produce enormes chemistry exchange, probbly ewan tebprature and blod foow rise, and that can
fro me personali induce hermix endotoxin reaction too ... etc
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How is that possible that exerting some pressure on certain areas so that POIS is activated without the need for an emission? .... Could that be one more clue about this disease? ... or just brings more confusion?
People with mast cell activation disorders can have mechanical pressure as a trigger for their symptoms so this doesn't surprise me.
Thank you Muon, I had no idea that by means of a mechanical action as simple as sitting down mast cell activation could be a possible reason for feeling POIS symptoms appearing. In fact I have recently read that mast cells contains histamine and eparin. And I have long suspected that histamine could be the cause of inflammation or dilation of blood vessels. That is clearly another rapid symptom I can see on my growing varicocele (varicose on testicle) when POIS symptoms begins.
Do you know any POIS sufferer having this mechanical mast cell activation, besides me? Or you are refering to an Illness different to POIS? Or simply mast cell activation in general?
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And those senzations and symptomes you discraybing i hawe it to, i think it is nerve isue.
Thank you HOD,
I also was thinking it was something linked somehow to nerves or a neurological disorder or problem. But it is also possible the mast cell activation.as Moun is suggesting.
I have done so many infection tests in the past and everything resulted to be negative. Including lyme disease.
It is true that I have a lot of symptoms very similar to the ones you have.
But do you also have the problem of activating POIS symptoms just by sitting down (for instance)?
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How is that possible that exerting some pressure on certain areas so that POIS is activated without the need for an emission? .... Could that be one more clue about this disease? ... or just brings more confusion?
People with mast cell activation disorders can have mechanical pressure as a trigger for their symptoms so this doesn't surprise me.
Thank you Muon, I had no idea that by means of a mechanical action as simple as sitting down mast cell activation could be a possible reason for feeling POIS symptoms appearing. In fact I have recently read that mast cells contains histamine and eparin. And I have long suspected that histamine could be the cause of inflammation or dilation of blood vessels. That is clearly another rapid symptom I can see on my growing varicocele (varicose on testicle) when POIS symptoms begins.
Do you know any POIS sufferer having this mechanical mast cell activation, besides me? Or you are refering to an Illness different to POIS? Or simply mast cell activation in general?
I have read some articles, case reports and experiences from patients with these disorders. Some of these patients have problems with sleeping (pressure related) or can't wear tight clothing, for others friction might be a problem. It is quite silly when you hear this for the first time. Yes I'm refering to a different illness but I suspect POIS actually being a mast cell activation syndrome. These cells could affect every system in the body and no two patients are alike. There is not a single treatment that works for everybody, instead patients use stacks for battling symptoms just like people are using on this forum, individualised symptom management.
I believe I have seen some folks on this forum mentioning having trouble with sitting (pressure related not posture) but I'm not sure and don't know whether that is related to their POIS symptoms. A couple of POIS patients have been tested for tryptase including myself, these were negative. But most (>80%) of the patients with MCAS don't have elevated tryptase (for mastocytosis it's >90% being pos for tryptase), also the dynamics of symptoms for MCAS vs mastocytosis are different. Mastocytosis is much more explosive then MCAS which led me to think there are two different release mechanisms at play here with mastocytosis or the clonal disorders showing full degranulation (there are papers going into this, like selective release or piecemeal degranulation).
Here is a list with all kinds of mast cell mediators: https://www.mastattack.org/mast-cell-mediators/
The problem is that most of them are not unique to mast cells.
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Yeah wery similar to pois symptomes. it is hard to be diagnosed, resarch in progres.
Quantum suscesifuly devolped his stuck inducing MC stabilizes naturall, quynerine patways etc...
By the way, my work is seditary and setings is sometimes imposible for me.
It is triger pois like symtomes, pots worsening because bad blod circulation.
As in pois an also in this mcas, pots, is one of the symptomes.
When you look at the symptomes , it is similar to poisers:
https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome#Symptoms
Treatments worth to tray. Cromolyn sodium MC stabiliser.
https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome#Treatment
I wonder myself, is this why coefeic acid (hawe antileucotrine efect) cofee help my
pois symptomes sometimes, and open my cloged nouse?
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Hi folks, Muon and HOD, It is quite interesting the information you shared with me...
I have been reading a little about what you say. And you are totally right. Symptoms are very similar to what my symptoms are.
I have also read this:
Lack of awareness (and even frank refusal to believe in the existence) of MCAS by many medical professionals is currently a hurdle to proper diagnosis.
And this is just the problem I am facing. And suppose many of you also!
I am telling the different doctors I am visiting in my country about the suspicion I have with high histamine levels on blood since several months ago. Trying they ask me to do a test and check it. But until now they refuse to doing it!... It is so frustrating!!
I have also read this:
Laboratory evidence of mast cell mediator (elevated serum tryptase, N-methyl histamine, prostaglandin D2 or 11-beta- prostaglandin F2 alpha, leukotriene E4 and others)
Too much possible things to test. Imagine if I had difficulties just to be able to check histamine levels ... what could be to prove all that list ....
Any idea on which of all these test would be best? Or which ones would have higher priority???
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Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.
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Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.
What does WBC means?
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Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.
What does WBC means?
Whole Blood Count
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Potential treatment options; scroll down to the 'Treatment of mast cell activation diseases' section:
Mast cell activation disease: a concise practical guide for diagnostic workup and therapeutic options
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3069946/
Quote button doesn't work. Fernab:''Any idea on which of all these test would be best? Or which ones would have higher priority???
No, but here are some numbers thrown around:
Determination of Plasma Heparin Level Improves Identification of Systemic Mast Cell Activation Disease:
https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0124912
Definitions, Criteria and Global Classification of Mast Cell Disorders with Special Reference to Mast Cell Activation Syndromes: A Consensus Proposal
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3224511/
Mast Cell Activation Syndrome: Proposed Diagnostic Criteria
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3753019/
Clinical correlates of blood serotonin levels in patients with mastocytosis:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3795418/
Here is a group of POTS patients with indication of mast cell disease. No tryptase has been found, low % N-methylhistamine but relatively high % for PGD2 metabolites:
Evidence of Mast Cell Activation Disorder in Postural Tachycardia Syndrome (P1.277)
http://n.neurology.org/content/84/14_Supplement/P1.277.short
Significance of Conversation between Mast Cells and Nerves
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2877069/
Some organizations:
https://www.mastocytosis.ca/en/diagnosis/signs-symptoms
https://www.mastcellaction.org/
Also be aware of the terminology, MCA,MCAD,MCAS. MCAS can be primary or secondary, also there are different subtypes of mast cells and release mechanisms.
Hopeoneday:''When you look at the symptomes , it is similar to poisers:''
https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome#Symptoms
Yes indeed, and even if I lack a symptom from the list I can find a family member of mine who has this, for example I don't have red eyes but my mother does.
Nas:''Just done a WBC and results are normal. I don't know what to do from now on. Should I redo the test but while on POIS. I usually get POIS symptoms when I smoke, should I smoke a cigarette then do the test to see if there is any possible difference? Maybe I should do a th1/th2 test. But the doctor says that this test should've been abnormal if I had something wrong with me.''
Can't help you. It's possible patients show different mast cell mediator profiles (if it has anything to do with mast cells in the first place though), if that's the case then finding a common denominator goes out of the window. It's a matter of keep testing things but the problem is that your doctor could lose trust in you if more and more results show up negative. The next step is that they will move the subject into the psychological realm. We are just in the explore phase of the disease. I personally have a whole list of things that I want to test and getting even one parameter tested is a problem, I just don't make any progress in this health care system, it's going too slow, too much bureaucracy and misunderstanding of the disease.
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Can't help you. It's possible patients show different mast cell mediator profiles (if it has anything to do with mast cells in the first place though), if that's the case then finding a common denominator goes out of the window. It's a matter of keep testing things but the problem is that your doctor could lose trust in you if more and more results show up negative. The next step is that they will move the subject into the psychological realm. We are just in the explore phase of the disease. I personally have a whole list of things that I want to test and getting even one parameter tested is a problem, I just don't make any progress in this health care system, it's going too slow, too much bureaucracy and misunderstanding of the disease.
I actually don't suffer from an issue of bureaucracy. All I need is to find that demn parameter.
This is a problem, I need to do something. How hard can it be hard to observe an immune reaction? This is not a case where I can just say fuck it and move on with my life. I can't move on. This is too debletating for me and for my future.
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I actually don't suffer from an issue of bureaucracy. All I need is to find that demn parameter.
This is a problem, I need to do something. How hard can it be hard to observe an immune reaction? This is not a case where I can just say fuck it and move on with my life. I can't move on. This is too debletating for me and for my future.
My point was that it's possible there isn't 'that one' parameter. I can give you some suggestions but don't blame me if they turn out to be negative:
ECP, Serotonin, Tryptophan, IL-8, IL-17, Heparin, Chromogranin A, Th1/Th2, BDNF, 11-b-PGDF2a, Leukotrienes, MMP-2, MMP-9, N-methylhistamine, Lp-PLA2, VEGF, P-selectin. And you can try a bunch of things that other people have posted on this forum like catecholamine metabolites, lactoferrin, several hormones etc. Good luck, I'm also going in blind.
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I actually don't suffer from an issue of bureaucracy. All I need is to find that demn parameter.
This is a problem, I need to do something. How hard can it be hard to observe an immune reaction? This is not a case where I can just say fuck it and move on with my life. I can't move on. This is too debletating for me and for my future.
My point was that it's possible there isn't 'that one' parameter. I can give you some suggestions but don't blame me if they turn out to be negative:
ECP, Serotonin, Tryptophan, IL-8, IL-17, Heparin, Chromogranin A, Th1/Th2, BDNF, 11-b-PGDF2a, Leukotrienes, MMP-2, MMP-9, N-methylhistamine, Lp-PLA2, VEGF, P-selectin. And you can try a bunch of things that other people have posted on this forum like catecholamine metabolites, lactoferrin, several hormones etc. Good luck, I'm also going in blind.
Thank you, we should never give up, even if we gone demn bankrupt. We either win or perish.
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Frenab, when i say cronic lyme disiese, meny poisers did sed that they tested and all clear...BUT..
maybe they "didnt cllear"- look what experts says- in this short wid- we go doc to doc :) but no dianose:
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
speling--...newer been treted , UNDIAGNOSED, or treated unproperly, an there large population
of peoples WITH ACTIVE INFECKTION!
Compare the symptomes to MCDS:
https://www.tiredoflyme.com/my-symptoms.html
Then, copare it to- CFS , ME, FMS...
So, cronic lyme, MCDS, CFS, FM ---POIS.
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By the way Nas when I mentioned Th1/Th2 it is not the ratio of the amount of cells but the relative activity of cytokine release:
https://www.imd-berlin.de/en/subject-information/diagnostics-information/th1th2-cytokine-balance.html
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Frenab, when i say cronic lyme disiese, meny poisers did sed that they tested and all clear...BUT..
maybe they "didnt cllear"- look what experts says- in this short wid- we go doc to doc :) but no dianose:
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
speling--...newer been treted , UNDIAGNOSED, or treated unproperly, an there large population
of peoples WITH ACTIVE INFECKTION!
Compare the symptomes to MCDS:
https://www.tiredoflyme.com/my-symptoms.html
Then, copare it to- CFS , ME, FMS...
So, cronic lyme, MCDS, CFS, FM ---POIS.
Hi HOD,
So you are trying to say that you have the suspition that POIS could be confused with a cronic lyme disease that has not correctly be diagnosed?
In my case, before a doctor told me in july 2017 for the first time that maybe my desease was POIS, I had been looking for any strange infection during 4 years before. I even went to specialists in infectious deseases. I have been tested against Borrelia. And resulted negative. I aked the specialist if it could be lyme disease. Yo a specialist in infectious deseases. And said me no. I even had been tested against Whipple desease. Also negative.
Maybe you are right and lyme disease was infra diagnosed, but here I have two questions....
First, it is possible yo have a confirmation that proves to be right 100% you don't have a lyme disease?....(you could always continue thinking you had a false negative in a test).
And second, can be a lyme disease triggered by a release? Or by the preseminal liquid presence?
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Potential treatment options; scroll down to the 'Treatment of mast cell activation diseases' section:
Thank you Moun for sharing all this interesting information.
I will read it.
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No problem Fernab. Nas, in the past we theorized about how endothelial dysfunction could be involved and upregulation of angiopoietin-1 could be beneficial. Dexamethasone does this and had some effect for you. There could be other reasons why this helped you. When patients with MCAS don't respond to first line therapeutic options they switch over to steroids and some patients have good results with that, it's probably far fetched but mast cells might be involved. Second, Dexamethasone supresses production of ACTH. Some folks on this forum have elevated ACTH levels so you can think of getting that tested. It also affects prostaglandin synthesis (COX-2), so prostaglandins could be explored as well. I'm throwing in some ideas in here don't focus too much on them just keep them in mind.
Now to think of it, many years ago the sports medicine physician gave me an injection with steroids in my groin/leg area (can't find the english word for this area, in dutch it's 'lies') because I couldn't play soccer anymore due to problems with this area. It was a thick and long needle, never seen anything like it. He said it were two substances, I believe he said one of them was a steroid I have to look it up. After injection the 'injury' was completely reversed for 4 hours straight before it came back locally. I will call the hospital to ask if they still have this info in their archives, might be of interest.
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No problem Fernab. Nas, in the past we theorized about how endothelial dysfunction could be involved and upregulation of angiopoietin-1 could be beneficial. Dexamethasone does this and had some effect for you. There could be other reasons why this helped you. When patients with MCAS don't respond to first line therapeutic options they switch over to steroids and some patients have good results with that, it's probably far fetched but mast cells might be involved. Second, Dexamethasone supresses production of ACTH. Some folks on this forum have elevated ACTH levels so you can think of getting that tested. It also affects prostaglandin synthesis (COX-2), so prostaglandins could be explored as well. I'm throwing in some ideas in here don't focus too much on them just keep them in mind.
Now to think of it, many years ago the sports medicine physician gave me an injection with steroids in my groin/leg area (can't find the english word for this area, in dutch it's 'lies') because I couldn't play soccer anymore due to problems with this area. It was a thick and long needle, never seen anything like it. He said it were two substances, I believe he said one of them was a steroid I have to look it up. After injection the 'injury' was completely reversed for 4 hours straight before it came back locally. I will call the hospital to ask if they still have this info in their archives, might be of interest.
Thanks for your suggestions Muon I will look into them. I think in my next visit I will smoke a cigarette and ask her for Mast Cell Syndrome indicating parameters. I'm not sure if my symptoms with cigarettes and my symptoms with POIS share the same mechanism but hopefully it can at least lead to something.
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She probably will test for tryptase which has a high chance turning up negative for MCAS. Then she will draw the conclusion that mast cells are not involved. Your test shows increased mucus secretion: https://drive.google.com/open?id=1voKz6VVCs0umbO-G9ShNOGP5Qu9JTkn5
Check table 1 for mucus secretion, those are my best bets: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3224511/
I would get POIS and smoke sigarets, be sure you get wrecked or do anything that triggers more mucus secretion. PGD2 is pretty unstable, 11-beta-PGF2alpha is more reliable.
You can also explore cytokines and chemokines: https://www.mastattack.org/mast-cell-mediators/
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The PGD2 metabolites (24h) results, 11-beta-PGF2alpha and tetranor-PGDM, came back normal. I haven't uploaded the results yet. I will draw blood for ECP this week and will probably receive the result for that in december.
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Frenab, when i say cronic lyme disiese, meny poisers did sed that they tested and all clear...BUT..
maybe they "didnt cllear"- look what experts says- in this short wid- we go doc to doc :) but no dianose:
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
speling--...newer been treted , UNDIAGNOSED, or treated unproperly, an there large population
of peoples WITH ACTIVE INFECKTION!
Compare the symptomes to MCDS:
https://www.tiredoflyme.com/my-symptoms.html
Then, copare it to- CFS , ME, FMS...
So, cronic lyme, MCDS, CFS, FM ---POIS.
Hi HOD,
So you are trying to say that you have the suspition that POIS could be confused with a cronic lyme disease that has not correctly be diagnosed?
In my case, before a doctor told me in july 2017 for the first time that maybe my desease was POIS, I had been looking for any strange infection during 4 years before. I even went to specialists in infectious deseases. I have been tested against Borrelia. And resulted negative. I aked the specialist if it could be lyme disease. Yo a specialist in infectious deseases. And said me no. I even had been tested against Whipple desease. Also negative.
Maybe you are right and lyme disease was infra diagnosed, but here I have two questions....
First, it is possible yo have a confirmation that proves to be right 100% you don't have a lyme disease?....(you could always continue thinking you had a false negative in a test).
And second, can be a lyme disease triggered by a release? Or by the preseminal liquid presence?
So you are trying to say that you have the suspition that POIS could be confused with a cronic lyme disease that has not correctly be diagnosed?
Yes-exactly this, i will post new tread soon with explanation, an then will be more understandable.
Can be trigered...? The big posibility that it can, after eyculation , in body becomes to hapen
exesive neuro hormonal changes, ewen on arosaul only, an if more factros disturb this proces,
some poisers with cronic lyme , some MTHFR(thats why help some poisers), some with viruses,
from all that = imunocompromised ,you hawe pois, cfg, me,, fm, mcds...................
I was tick byted in testicle when i was a kid. Symptomes all my life always leed me to lyme disiese.
Did western blort, elisaa.... all negative. BUTT! Me also didnt know the info that cronic late stage
of lyme disiese cant be diagnosed by todeys medicines in big mayority of cases.
Yust simply cant! Again : hear carifuly again - unfrortinytly the testings are wery porr, its are
unadequate to indetify ACTIVE INFECTIN.
Repeat-1min.30sec
https://www.youtube.com/watch?time_continue=50&v=TR4XFofnoPM
Some stuf we dicusing here is well known, 20, 30 years before. And here we resarching to help us.
Nothing new, yust finding tretmants we" cant gets from doctors".
You will see it i will post soon treatmants, some of them are pooled by me-like virus teory
and some members fwew days after that maked treeds like-virus induced pois etc-
And when i dig tru this forum, it is not me that i mention virus teory first(this not mater at all
, the meter is that we found working solutions for us)i found that mebers before mentioned this teory
, and wagus nerwe teory infection etc.
And not all poisers hawe cronic lyme, thouse who hawe it , we are fukbllbjhed ewan more,
WERY DIFICULT TO TREAT!
Sory for wrong splelling, i hawe brain fog, did modified this post 817 times to corect mistakes.
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Yesterday the GP's assistent told me the results were normal but I didn't get to see the values for myself, so I made a post that everything was normal. However, the results are not completely normal, there is an anomaly. I guess the assistant was sleeping. Click here (https://www.dropbox.com/s/d2bs22uh2e9nqxw/Muon%205-3%20PGD2%20metabolites%2024h.pdf?dl=0). I was on the brink of abandoning the involvement of mast cell activation but now I'm not sure, this is tricky.
This test is done at the end of the summer. I was in a far more worse state during mid summer though, wish I had done it at that point (or in 2013 (crisis year) or before desensitization).
So I wanted to get my blood drawn today at the GP's office for ECP. There was no lab available in the region so it couldn't be done. They gave me 3 forms for 3 different time points (if you have suggestions at what time I should do the test then tell me). I need to go look for another hospital outside this region, this will take time. I also need to play it more tactical without dropping the word ejaculation.
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So just a little update.
I think my doctor has given up because she does not know how to move on from there and she leans towards that what I have is just psychological.
So I guess I'm going with this alone... Again. She will help in doing tests and giving me medical advice, so here's that.
I asked her that I would smoke a cigarette then make CBC. But she doesn't believe that it'll show anything, she says that if I had anything it would've appeared in the previous WBC test, but everything turned out normal. I asked her about th1/th2 test but it's not available in my province.
I did the test and it will be sent to me tomorrow, I wish something abnormal would appear but probably not. I feel in order to accurately test POIS we need a nuanced test before orgasm and after orgasm that shows the complete immunological activity that is taking place in our body. I don't think that this available where I live.
Anyways, I think that's it for me, for now.
I'll ask her about ACTH.
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Yesterday the GP's assistent told me the results were normal but I didn't get to see the values for myself, so I made a post that everything was normal. However, the results are not completely normal, there is an anomaly. I guess the assistant was sleeping. Click here (https://www.dropbox.com/s/d2bs22uh2e9nqxw/Muon%205-3%20PGD2%20metabolites%2024h.pdf?dl=0). I was on the brink of abandoning the involvement of mast cell activation but now I'm not sure, this is tricky.
This test is done at the end of the summer. I was in a far more worse state during mid summer though, wish I had done it at that point (or in 2013 (crisis year) or before desensitization).
So I wanted to get my blood drawn today at the GP's office for ECP. There was no lab available in the region so it couldn't be done. They gave me 3 forms for 3 different time points (if you have suggestions at what time I should do the test then tell me). I need to go look for another hospital outside this region, this will take time. I also need to play it more tactical without dropping the word ejaculation.
Were you on POIS when you did this test Muon? I believe we should always do our test when we are on POIS. Even my urethral inflammation actually gets better with time. My last urine sample showed only 33 scale of mucus and it was only four day after ejaculation.
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Were you on POIS when you did this test Muon?
Yes and I skipped the first urination after ejaculation because I did not want to contaminate the urine sample with sperm leftovers. Perhaps if I include that one the value could be higher because being closer the trigger and maybe that bit of volume is higher in concentration then the consecutive urinations. Will add some details later in the info.txt file.
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Were you on POIS when you did this test Muon?
Yes and I skipped the first urination after ejaculation because I did not want to contaminate the urine sample with sperm leftovers. Perhaps if I include that one the value could be higher because being closer the trigger and maybe that bit of volume is higher in concentration then the consecutive urinations. Will add some details later in the info.txt file.
So they should've been elevated if there was a COX1 or 2 activity, right?
Sorry the science of this stuff is too deep for me.
This site: https://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/37931
Cites that "Elevated levels of serum tryptase, urinary N-methylhistamine (NMH), 2,3-dinor-11beta-prostaglandin F2 alpha (2,3 BPG), or leukotriene E4 (LTE4) are consistent with the diagnosis of systemic mast cell disease."
Wanna test tryptase, N-methylhistamine and leukotriene E4 next?
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Thank you HOD for the information. Maybe what you are supposing about chronic lyme disease is un some cases true. Even un my own case.
But I then wonder if it is possible to know for sure if someone is not infected by any bacteria causing lyme disease?
I was tested for Borrelia burgdorferi (one of the many Borrelia group of bacteria). And resulted negative by serology (IgG and IgM). As far as I know, I was never bitten by a tick. But still I can not be 100% sure that lyme disease could not be what causes me POIS. Until there is something that proves otherwise.
That's why I'm wondering if there is any test that lets you know for sure that you do not have lyme disease.
Muon, hope this anomalie you found on your tests leads yo something interesting.
Nas, Although my case is (I think) something different from yours, the difficulty you are living is identical to mine and I guess that of many others in this forum. But we can not give up. I think it's a matter of time and continue to have ideas like the ones we're looking for. And try to find some way to alleviate the problem. It is also important. in my case for now it is the use of anti-inflammatory and abstinence. Since I am in a very difficult situation. for now the anti-inflammatory (etoricoxib) is the only thing that keeps me afloat. Although for now I can not get out of the difficult situation. I can only send you a message of encouragement and that we are many looking for a good solution to this horrible situation. Never give up!
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Nas, N-methylhistamine and tryptase have been checked and being normal (I have uploaded NMH see file 5-1). Tryptase has been tested before and after ejaculation. Leukotrienes haven't been tested and I could do that in the future.
Muon, hope this anomalie you found on your tests leads yo something interesting.
I don't think so to be honest, this info will rot away on POIScenter and there are only a few labs in the world where you able to test this. So I don't think people will check this parameter for themselves and doctors aren't willing/capable to investigate any abnormal parameter that has been found so far let alone this one.
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I don't think so to be honest, this info will rot away on POIScenter and there are only a few labs in the world where you able to test this. So I don't think people will check this parameter for themselves and doctors aren't willing/capable to investigate any abnormal parameter that has been found so far let alone this one.
That's kinda too pessimistic Muon, you should definitely go to an immunologist and ask him to investigate your Mast Cell situation further. Show him your tests and see where you go from this.
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I was with an immunologist in my country. in Europe. A few months ago I told my immunologist that I had a suspicion that histamine might be related in some way to POIS. and he did not show any interest in that topic. I do not know if it's because he does not know that area well (perhaps more usual for an allergist) or that a doctor simply does not like you to tell him what to do. It must possibly be wrong for you to invade their land. It has to be the one that determines, by itself that you have to look at this or that. If you go to tell him what you think could come well to look or check, it seems that he feels uncomfortable because he feels that you invade his land, and possibly think. but who the hell do you think it is you to tell me what I should or should not do? I think that in general they do not like that you get into their domain. the doctors do not usually receive well that you try to give them indications of what to do. It is not their way of working. and I think that's a big problem. even though you were right. They do not usually take it into account. They usually consider that you get into their role and invade their work.
I am really interested un those cases Muon told me about patients who had problems laying down on bed or wearing tight clothes. Because this is exactly what is happenning to me. Till now, I was able to control it by taking a potent and efficient NSAID (etoricoxib). But don't know why, I am slowly loosing control. And every time I can spend less time lying in bed. So, if I continue this way.... I guess I will have a big problem. It is necessary to lay down on bed to sleep.
and as I continue like this on this road I will end up not being able to do it and I will end badly. and it worries me a lot, really. and the worst thing is that I see that nobody realizes that this can end up happening to me. because another thing that I see happening is that doctors do not like to anticipate what you tell them that could end up happening. They directly treat or try to treat a problem when they clearly see what is happening. but they need them on their own account to see in the result of some proof that this situation is actually happening. Before seeing it, they do not consider doing anything.
They are driven by your symptoms if they are able to extract any test result. But seems that this is exactly the problem. They just don't get to see any inflamation biomarker or any clue to be able to help you. That's the biggest problem.
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I was with an immunologist in my country. in Europe. A few months ago I told my immunologist that I had a suspicion that histamine might be related in some way to POIS. and he did not show any interest in that topic. I do not know if it's because he does not know that area well (perhaps more usual for an allergist) or that a doctor simply does not like you to tell him what to do. It must possibly be wrong for you to invade their land. It has to be the one that determines, by itself that you have to look at this or that. If you go to tell him what you think could come well to look or check, it seems that he feels uncomfortable because he feels that you invade his land, and possibly think. but who the hell do you think it is you to tell me what I should or should not do? I think that in general they do not like that you get into their domain. the doctors do not usually receive well that you try to give them indications of what to do. It is not their way of working. and I think that's a big problem. even though you were right. They do not usually take it into account. They usually consider that you get into their role and invade their work.
I am really interested un those cases Muon told me about patients who had problems laying down on bed or wearing tight clothes. Because this is exactly what is happenning to me. Till now, I was able to control it by taking a potent and efficient NSAID (etoricoxib). But don't know why, I am slowly loosing control. And every time I can spend less time lying in bed. So, if I continue this way.... I guess I will have a big problem. It is necessary to lay down on bed to sleep.
and as I continue like this on this road I will end up not being able to do it and I will end badly. and it worries me a lot, really. and the worst thing is that I see that nobody realizes that this can end up happening to me. because another thing that I see happening is that doctors do not like to anticipate what you tell them that could end up happening. They directly treat or try to treat a problem when they clearly see what is happening. but they need them on their own account to see in the result of some proof that this situation is actually happening. Before seeing it, they do not consider doing anything.
They are driven by your symptoms if they are able to extract any test result. But seems that this is exactly the problem. They just don't get to see any inflamation biomarker or any clue to be able to help you. That's the biggest problem.
That's true Ferbab, we need to be tactical in the way we talk to doctors, we shouldn't say that we have POIS outright. We should give them the long story in hopes of them understanding the situation we are in.
Muon's elevated PGDF should be a much more concrete parameter for the immunologist to move on from there.
The problem with doctors is that they have no idea how to deal with this illness since they don't have quite the experience with it. That's why we need to progress with figuring out about this illness our selves. But obviously there needs to be a point where a professional steps in and engineers a treatment. If POIS truly was a case of Mast Cell Syndrome then I believe doctors are able to deal with this illness based on MCAS treatment protocols.
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My CBC came. It's completely normal. I don't feel like uploading the results since it's really similar to the one before it.
At this point I don't think that CBC is a proper diagnosis for POIS especially if we have Mast Cell Activation Syndrome, the white blood cells count can be completely normal and the immune reaction would still occur. MCAS is very tricky to diagnose and it requires more nuanced testing.
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Yeah NAS , unfortyniy that is the way its, Fernab you are wright about doc aproach, when i mention
all that syptomes i hawe from MCDS list, and mention POIS, i am redy to go in" lunitic, carzy people house".
I can be in such a anaplaxes episodes (in wiki read), that i can bayrly suvive.
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What is always intresting to me, when i resarching this tematic, that alwas lead to tick byte or some sort of
infection.
See on wiki MCDS an down there you will see reed this -histamine intolerance- because is related to MCDS,
https://en.wikipedia.org/wiki/Histamine_intolerance an then it lead you to Mast cels and bashophils,
Basophils can be fond in usualy high lewels in ectoparasite infection in that tisue , e.g ticks .
https://en.wikipedia.org/wiki/Basophil#Function
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Hi HOD,
I read the 2 links you posted. Histamine intolerance was something that a dentist told me some months ago. And that in some cases an enzyme called DAO may be present in less than normal amounts. This enzyme is responsible of histamine metabolization. So, if your DAO levels are low. It can happen your histamine levels are too hi on blood. Causing a lot of symptoms.
When you say MCDS, you mean Mast Cell Activation Syndrome?
Mast cells and basophils have a lot of similarities. But seems they are different.
the more I read the more I realize the complexity that all this has. There are many possibilities for searching and testing. to go in the right direction. It is necessary to go step by step. and I think the help of professional people is necessary. It is so complex that it is also very easy to make mistakes or not to notice any details. or see only part of the problem and not everything as a whole. that is why, apart from trying to find a solution, contributing ideas. I think that something can also be done, giving visibility to the problem. so that each time you hear more. and little by little, it is becoming more and more important in the medical society. I have read in GARD that the number of poisers in social networks is growing. and also that it is an underdiagnosed disease. Demo has recently informed us that NORD will communicate to the person assigned the fund to investigate POIS by the end of the year. there is also the investigation of la_petit_mort. some things are starting to move. I, for my part, try to make it known to all the doctors I see. and I have signed up on the official list of rare diseases in my country. that is to say, I also try to find some solution and explanation to POIS. also move things around all possible ways to make it known and that has the widest possible dissemination. since in some way that also benefits us. I suppose that is the way to call the attention of professionals who someday investigate it and really help us. since I think it's quite complex.
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Yes mcas.
This girl also had similar story, all began in first in her gut.
https://www.raredisease.org.uk/news-event/my-journey-to-a-mast-cell-activation-syndrome-diagnosis/
Helped by leukotrine inhibitors.
Intrestly, those are treatmants for astma.
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MAST CELL ACTIVATION BY DIVERSE STIMULI CAN BE SUPPRESSED BY STEROID THERAPY AND TARGETING THE FYN-STAT5B CASCADE
https://scholarscompass.vcu.edu/etd/5069/
Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis
http://www.bloodjournal.org/content/122/21/5240?sso-checked=true
MCAS genetics
https://vimeo.com/142039306
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MAST CELL ACTIVATION BY DIVERSE STIMULI CAN BE SUPPRESSED BY STEROID THERAPY AND TARGETING THE FYN-STAT5B CASCADE
https://scholarscompass.vcu.edu/etd/5069/
Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis
http://www.bloodjournal.org/content/122/21/5240?sso-checked=true
MCAS genetics
https://vimeo.com/142039306
My WBC came completely normal even after smoking a cigarette ( which causes me POIS symptoms ) and suffering from great symptoms. This tells me that what ever immune reaction I'm having is related more to mediators release than blood cells count.
I'm currently taking Fexofenadine 120 and Montelukast 10mg every day, as my doctor recommended for about a week. We'll see where that'll get me. I told her that I want to completely suppress the Mast Cell activity by taking Cox inhibitors and Mast Cell stabilizers, but she said that Montelukast should be enough. We'll see.
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MAST CELL ACTIVATION BY DIVERSE STIMULI CAN BE SUPPRESSED BY STEROID THERAPY AND TARGETING THE FYN-STAT5B CASCADE
https://scholarscompass.vcu.edu/etd/5069/
Characterization Of Common Blood Test Abnormalities Potentially Aiding Diagnosis Of Mast Cell Activation Syndrome: A Preliminary Analysis
http://www.bloodjournal.org/content/122/21/5240?sso-checked=true
MCAS genetics
https://vimeo.com/142039306
My WBC came completely normal even after smoking a cigarette ( which causes me POIS symptoms ) and suffering from great symptoms. This tells me that what ever immune reaction I'm having is related more to mediators release than blood cells count.
I'm currently taking Fexofenadine 120 and Montelukast 10mg every day, as my doctor recommended for about a week. We'll see where that'll get me. I told her that I want to completely suppress the Mast Cell activity by taking Cox inhibitors and Mast Cell stabilizers, but she said that Montelukast should be enough. We'll see.
That's what I meant earlier with there might not be a common denominator as far as parameters go. Mast cells could release mediator profile X in person A en profile Y in B while the location of release might be the same affecting the same system. That same system might be affected in a different way because different mediators can act on different receptors. As a result you may see different lab results for patients with the similar complaints. Then you might ask yourself whether these mast cell are releasing the same type molecules every single time? POIS might be a symptom of MCAS (I'm absolutely not sure about this let this be clear). Watch the video, he mentions about this symptomatology for families without elevated tryptase but research into these particulier patients is rare. Also keep in mind that there aren't many tests available for most of these mediators, and most of them aren't specific for mast cells.
He also tells you there isn't a silver bullet, this tells me different mediators could be released for different patients needing different medication. It's a trial and error process which is individualized at this point in time. If I look at my own case symptoms might trigger all over the place but not in a explosive manner like these mastocytosis guys and gals. It's difficult to talk about it with doctors it's like talking against a wall (I actually have given up on this because most can't look at the complete picture or are too much time restraint, it's a multi disciplinary issue as far as symptoms go), my symptom picture as a whole is complex and making this clear to a doctor is very hard (just try this while you have cognitive symptoms, racing mind, speech problems and symptom complexitiy within a short amount of time....good luck).
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I have viewed this vídeo online YouTube...
https://www.youtube.com/watch?v=JdbkviPUmg4
There exist especialists for MCAS as Mariana Castells seems to be. I had sent an email to another specialist in my country. Hope he answer anything to me. I think the diagnosis of MCAS seems to be very dificult. In the video I posted, Mariana tells that maybe between 6 and 12 months may be necessary.
I will try to contact a specialist on MCAS un my country.
Will tell you if any result.
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So I've been on montelukast 10mg for four days with Fxofenadine 120mg before sleep. I took one and after an hour and a half I masturbated. I also took pirocicam 20mg before 15 minutrs just in case. Overall I feel way less physical symptoms; when it comes to blood pressure and fatigue for example. I also feel less physical pain. When it comes to cognitive symptoms I still got them but they are not as bad as I expected. I was still suffering from cognitive symptoms like difficulty speaking and memory problems but my concentration problema were good and brain fog is less severe. Overall there is ~25% reduction. But that's not really that huge and I still need improvement.
I will also see if this effect continues or it's just placebo.
I also urinated after ejaculation so that also could be a factor.
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I've contacted a MCAS related academic but got no response so far. By the way it might be interesting to do the 11b-PGF2a test again but this time for blood plasma close to ejaculation. In allergic diseases and asthma this plasma value might peak within 2 hours after exposure of a trigger/allergen. A few days ago POIS gave me a tight feeling in certain parts of my body along an elongated line, I don't think these were muscle groups. It might have been local vasoconstriction. In which country are you located Fernab?
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Hi, I asked an specialist on mastocitosis in my country hoping he also knew about MCAS since it is also a type of mast cell activation disorder. He aswered me by email. He told me that due to reasons unrelated to him, he had to abandon medicine.
But he has told me about another Doctor who was working with him. Maybe next days, I will be able to contact her. I do not know if she will also have some knowledge as advanced as the Dr who unfortunately has referred me to her. But I will try.
Hi Muon, let me tell you your question by a PM. Ok?
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Interesting video. Many things discussed on this forum is being packed into this video. Hormone/brain mast cell interaction, lyme, stress, temperature, diurnal rythms, infection (bacteria/mucus, viral, mold), gut, diet, blood-brain barrier, methylation, behaviour, inflammation, cytokines, reactions to supplements, diagnostic tests, triggers, desensitization etc.
For discussion about treatment options skip to 1:30:00 Episode #58: Mast Cell Master with Dr. T.C. Theoharides, PhD, MD:
https://www.youtube.com/watch?v=6gfTFwJgIVQ
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I have seen some minutes for the moment. And I agree that it is really interesting. But at the same time makes you understand the great complexity that involves...
But I totally agree with you Moun... Really interesting!
Thank you for sharing It!
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So just done a serum ACTH and Cortisol tests and my ACTH was normal but my cortisol is high. Which is predicted. POIS is basically a case of stress 24 seven, and my acne is terrible and I've been experiencing some hair loss. Will see if I can do a cholesterol levels next.
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Did you have POIS symptoms when this was measured Nas? I wouldn't immediately jump to the conclusion that the cause of POIS is stress though, it might be who knows, but I would keep an open mind.
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Yeah, hi cortisol is comon patern in poisers, hi adrenals, is it stres or infection inflamation fight or life stayl?
But like one side of poiser hawe comon patern of low T, one hawe hi cortisol, but on odher side,
not all hawe hi cortisol, but it is comon patern.
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Did you have POIS symptoms when this was measured Nas? I wouldn't immediately jump to the conclusion that the cause of POIS is stress though, it might be who knows, but I would keep an open mind.
No it was today. Which is the third day for me after POIS. I'm still suffering from POIS at the moment, but obviously not as strong as 10 minutes after masturbation.
Yeah, so I don't think that POIS is caused by high stress though I didn't say that lol. What I mean is that when you are stressed 24 seven being awkward with people obviously cortisol would be high. I also believe that inflammation is another reason for the high cortisol.
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Yeah, hi cortisol is comon patern in poisers, hi adrenals, is it stres or infection inflamation fight or life stayl?
But like one side of poiser hawe comon patern of low T, one hawe hi cortisol, but on odher side,
not all hawe hi cortisol, but it is comon patern.
Yeah I truly believe that systematic inflammation is the reason for elevated Cortisol.
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Did you have POIS symptoms when this was measured Nas? I wouldn't immediately jump to the conclusion that the cause of POIS is stress though, it might be who knows, but I would keep an open mind.
No it was today. Which is the third day for me after POIS. I'm still suffering from POIS at the moment, but obviously not as strong as 10 minutes after masturbation.
Yeah, so I don't think that POIS is caused by high stress though I didn't say that lol. What I mean is that when you are stressed 24 seven being awkward with people obviously cortisol would be high. I also believe that inflammation is another reason for the high cortisol.
Ah ok sorry for my misinterpretation of your comment Nas. Yes I do think POIS puts stress on the body, perhaps by inflammatory cytokines, mast cell mediators or a fight or flight response what HOD was mentioning.
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So what do you think, guys? Should I lower it and get rid of some unwanted side effects? Or is it actually a good thing that Cortisol is elevated because it aids in releasing anti-inflammatory mediators?
Btw, today when they took out my blood it was super difficult and they had to take it from the other arm after the first one gave them a hard time. The blood was very dark ( almost black ) and super thick. I wonder if that is somehow related to POIS.
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I have no idea whether you should lower it. If inflammation is the cause of this level I would suspect most symptoms are related to that inflammatory process rather than the high cortisol, I don't think lowering this value will help that much, but again, this is just heavy speculation on my part.
Yea about the blood I do have it as well, we have discussed this a bit on the blood flow related threads, it could be possible more patients have this. No way of telling until more people will observe this for themself.
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Yea about the blood I do have it as well, we have discussed this a bit on the blood flow related threads, it could be possible more patients have this. No way of telling until more people will observe this for themself.
I asked my doctor about it she said it was normal, my HCT was normal: HCT= 43.4% 37.0 - 54.0
I don't know, every time I ask my doctor everything for her is completely normal lol.
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There could be many reasons for this: https://www.chla.org/genetic-clotting-disorders
Factor VIII strikes my eye, since this is a mast cell mediator. Lipoproteins is elevated in my brother and might play a role in this. I also have seen von willebrand factor being mentioned, that one is interesting as well. This is being released from endothelial cells, it's the content of endothelial granules. High levels indicate endothelial activation and could indicate thick blood. FVIII and vWF should be measured both since they bind to eachother. So much things to test that are interesting LOL.
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Yeah, hi cortisol is comon patern in poisers, hi adrenals, is it stres or infection inflamation fight or life stayl?
But like one side of poiser hawe comon patern of low T, one hawe hi cortisol, but on odher side,
not all hawe hi cortisol, but it is comon patern.
I have both. Low testosterone and high cortisol.
I don’t think stress causes POIS. Stress and high cortisol is a symptom of POIS.
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Ok so after a week of Montelukast and Fexofenadin I have came to the fact that they are not effective. I took Montelukast on 6 pm Friday and then in 7:00 pm I took Piroxicam 20mg. I've been taking Fexofenadin 120 mg for 5days before sleep. All in all in 7:15 pm I masturbated and nothing noticable occurred when it comes to cognitive symptoms, same old POIS. I perhaps had less physical symptoms but I'm not sure if that's placebo. Anyways if it truly worked then at least today I would be much better cognitively but as usual POIS is in its third day phase.
Its weird since I inhibited Cox-1, Histamine H1 and leukotreine. Yet POIS still happened. I'm not sure why that was enough since these are the major mediators of inflammation.
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Wander.
I agree to some degree. Who isnt under stress today?
We not tolerate stres the same. Stres can induce meny meny ilnes if it is cronic,
but also do not haf lead to diesese, depend on meny meny factors in human body.
Stres can influence imunitiy an dormant viruse flares etc...
Do you remeber recently vhen i puled VIRUS teory, imidiatly 2-3 days later post and treds are
devolped virus induced etc...and those cascades is proved by science.
Thats why for some work mthfr, keps virus dormant, impruve glutation etc...
Do you remeber soon after i mention aciclovir use here, some poisers fwev days later do
aciclovir test and some of them helped and no active here enymore , see:
https://poiscenter.com/forums/index.php?topic=2659.msg23445#msg23445
Some of them cured by diet(probbly some alergen, patogen here) an lectin avoidence....
Why acii.. not helped to all? May personal answer is that ,we, others, hawe hiden cronic infecton
wich we not lucky enough to cure with antibiotics. Togedher with mthfr
oher mutations, autoimune tendency and imunocompromised,
we get hard, wery hard to treat.
Recently, you opened post about personall testemonis, and there member kia... hawe a long long
post about how God give him cure, and Glc ironilcly respond to him that he is also pray but nothing :) .
(i am religios to, but with my two feat on earth).
And then i reread this post again and again, an i tought that i noticed something there, a then
i read it again, he swear about his cure an that he is not taking any medication exept some
amoxicylin ... i mean whaaat??? amoxicylin ... eehh heere.yo.go... :) .
https://poiscenter.com/forums/index.php?topic=81.msg21838#msg21838
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Has anyone checked Corticotropin-releasing hormone?
https://en.wikipedia.org/wiki/Corticotropin-releasing_hormone
https://youtu.be/6gfTFwJgIVQ?t=2461
If mast cells are somehow more reactive in POIS then you will probably see changes in certain hormone levels and regulatory functions (blood pressure etc) since 95% of the mast cells in the brain are concentrated in the Hypothalamus. The mast cells inside the hypothalamus release mediators which affect the hypothalamus itself, which is responsible for things like metabolism, hunger, autonomic functions. All play a role in my case, makes you wonder if these cells are firing in the hypothalamus during POIS or by other stimuli like temperature due to nerve/brain signaling.
Interestingly when I have a headache it's always in the same spot and it's right around the area where the hypothalamus is located. Triggers like temperature, citalopram, food can cause this. Now to think of it I had the worst headache ever during the summer of 2013, dysautonomia was at its peak and I was extremely sensitive to temperature. It might be that these cells in the hypothalamus were very active at that time. Metabolism, heart rate, waking up every morning at exactly 5 AM, thermoregulation problems and the list goes on.
https://en.wikipedia.org/wiki/Hypothalamus
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Yeah, it seams that haypotalamus is inwolwed in meny our problems, if those part of the
brain is inflamed, and by symptomes its seams that it is.
So , hypohtalamus is inwolwed from gut flowe(wagus nerwe), to sex drive...etc all our symptomes.
Hi temperature is dewastating on me, i go in pois like state on hi temperature.
A lot of thing go on my head those days, i ewan metino to put on top of my head eletrods to
precasily mesure teperature there, in arosaul and after eyaculation, and mesure the body
temperature to and folow changes two thre days.
After eyaculation my body go in so exesiwe change, like burning inflamed change, and
i must shower 2 times a day if don want a smell badly, that not hapen in apstinence.
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Ok so after a week of Montelukast and Fexofenadin I have came to the fact that they are not effective. I took Montelukast on 6 pm Friday and then in 7:00 pm I took Piroxicam 20mg. I've been taking Fexofenadin 120 mg for 5days before sleep. All in all in 7:15 pm I masturbated and nothing noticable occurred when it comes to cognitive symptoms, same old POIS. I perhaps had less physical symptoms but I'm not sure if that's placebo. Anyways if it truly worked then at least today I would be much better cognitively but as usual POIS is in its third day phase.
Its weird since I inhibited Cox-1, Histamine H1 and leukotreine. Yet POIS still happened. I'm not sure why that was enough since these are the major mediators of inflammation.
Nas i think that it will be worth to try this https://en.wikipedia.org/wiki/Ketotifen
and this https://en.wikipedia.org/wiki/Cromoglicic_acid
https://en.wikipedia.org/wiki/Mastocytosis#Treatment
Couse those two are more prone to mast cells stabilization, and it seam to that this can
go tru blod brain barier to.
Consult with your doctor.
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Ok so after a week of Montelukast and Fexofenadin I have came to the fact that they are not effective. I took Montelukast on 6 pm Friday and then in 7:00 pm I took Piroxicam 20mg. I've been taking Fexofenadin 120 mg for 5days before sleep. All in all in 7:15 pm I masturbated and nothing noticable occurred when it comes to cognitive symptoms, same old POIS. I perhaps had less physical symptoms but I'm not sure if that's placebo. Anyways if it truly worked then at least today I would be much better cognitively but as usual POIS is in its third day phase.
Its weird since I inhibited Cox-1, Histamine H1 and leukotreine. Yet POIS still happened. I'm not sure why that was enough since these are the major mediators of inflammation.
Nas i think that it will be worth to try this https://en.wikipedia.org/wiki/Ketotifen
and this https://en.wikipedia.org/wiki/Cromoglicic_acid
https://en.wikipedia.org/wiki/Mastocytosis#Treatment
Couse those two are more prone to mast cells stabilization, and it seam to that this can
go tru blod brain barier to.
Consult with your doctor.
Ketotifen is going to be a pain to find because first generation anti-histamines are no longer used as much as second generation ones.
Also Cromoglicic acid is usually sold as inhaler liquid it's also hard to find nevertheless in an oral form.
Thanks for the suggestion though I'll still ask my Doctor maybe I can still find them.
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Cromoglicic acid is expensive and you will need lots of it because the absorbance is very poor. The oral form is mostly used to stabilize mast cells in the gastrointestinal tract. The inhaler form is used for symptoms other than gastro/food related. I hope you can try it out because I can't. There is just no good mast cell stabilizer on the market at the moment that has a good absorbance plus able to cross the BBB.
Yes HOD, it might be interesting to measure hormones that are released by the Hypothalamus before and during POIS. Hormones is an area I haven't explored yet aside from thyroid hormones. By the way, I have received an email from a Professor who is known for research on MCAS from Germany but he can't accept international patients due to German law regulations.
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By the way, I have received an email from a Professor who is known for research on MCAS from Germany but he can't accept international patients due to German law regulations.
How limited is your interaction with him, can you ask about his opinion about POIS perhaps he can give his medical advise on some POIS theories, can he perscribe you anything at all?
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No he can't. I'm glad I even got a response. You will only get medical advice and prescription when you are a patient, it doesn't work like the way you described it. He also did not recommend me any doctors or hospitals because of the bad experiences MCAS patients might have with them. There is a mast cell disease center in The Netherlands. However I have spoken , quite by accident, a student of this center. He told me they don't know anything about MCAS so an appointment there would be useless.
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Hi all, I finally reached to have a short phone conversation with a retired Mast Cell Disorder specialist. He gave me the name of two old work collegues he had. He tells me that they are able to help me in diagnosing MCAS. I have an apointment with one of them (on december 4th). If for any reason I am not able to go on december the 4th, I also have reserved an apointment with her for december the 10th. Just in case. In my country there is a Medical center specialized on Mast Cell Disorders. Hope she will redirect me to It. Will tell you.
I have been using etoricoxib (potent NSAID) until yesterday. Because I have been using it during too much time now. And apart that during time, its effectiveness has been decreasing. Or my body over time, it ends up getting used and my possible MCAS trigger (pressure laying down on bed, or sitting down in any place) was already gaining ground on the etoricoxib. Basically I am not able to sleep the necessary amount of time daily. My GP, told me recently to try Tramadol.
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A 32 year old scientists hawe a lot of info and explanations-
https://www.mastattack.org/2014/10/how-to-get-out-of-a-reaction-cycle/
To quest abot tick byte -she answered:
Some people who have Lyme also have MCAS, and some people were misdiagnosed
with Lyme when they really had MCAS. They appear similar in many ways.
Explanes a lot:
https://www.mastattack.org/mastattack-107-laypersons-guide-understanding-mast-cell-diseases/
As far as i can understand, something can diturb our normall imune proceses in bone marow,
(I suspect some sort of infection) , genetic mutations, adults hawe life long disiese.
Mastocaytosis is "difernet" than mcas ...
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A 32 year old scientists hawe a lot of info and explanations-
https://www.mastattack.org/2014/10/how-to-get-out-of-a-reaction-cycle/
To quest abot tick byte -she answered:
Some people who have Lyme also have MCAS, and some people were misdiagnosed
with Lyme when they really had MCAS. They appear similar in many ways.
Explanes a lot:
https://www.mastattack.org/mastattack-107-laypersons-guide-understanding-mast-cell-diseases/
As far as i can understand, something can diturb our normall imune proceses in bone marow,
(I suspect some sort of infection) , genetic mutations, adults hawe life long disiese.
Mastocaytosis is "difernet" than mcas ...
Lyme can perhaps be a trigger for MCAD.
It is really curious when it comes to POIS. Waldinger thinks what we have is auto-immune. It could be true but it doesn't explain the systematic symptoms that MCAS explains better. But MCAS in turn doesn't explain how it gets triggered by semenal fluid?
POIS could be a case where we have both an auto-immune response to semenal fluid, and this auto-immune response triggers the MCAD.
For your case perhaps you got Lyme once in your life, but this caused your immune system to destablize and treat the Semenal fluid as if it was lyme. This activates Mast Cells but because of MCAD it releases mediators all across the body. Perhaps in my case the MCAD is only located near the brain which would explain how most of my symptoms are cognitive.
Maybe, I don't know I have no proof for auto-immune disease, Nanna mentioned that his auto-immune test was negative, so I don't know.
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Yes that's familiar to me HOD all those triggers adding up. I wonder if anyone has been tested for these:
https://www.mastattack.org/2015/11/immunoglobulin-free-light-chains-a-possible-link-between-autoimmune-disease-and-mast-cell-activation/
If antibodies in general play a role in POIS then they would be broken down into heavy and light chains. If POIS is an auto-immune condition and the antibody is too specific for detection wouldn't it break down into light chains as well which is easier to detect?
What if these antibodies break down into light chains and cause secondary MCAS or inflammation? Just some food for thought.
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Yes that's familiar to me HOD all those triggers adding up. I wonder if anyone has been tested for these:
https://www.mastattack.org/2015/11/immunoglobulin-free-light-chains-a-possible-link-between-autoimmune-disease-and-mast-cell-activation/
If antibodies in general play a role in POIS then they would be broken down into heavy and light chains. If POIS is an auto-immune condition and the antibody is too specific for detection wouldn't it break down into light chains as well which is easier to detect?
What if these antibodies break down into light chains and cause secondary MCAS or inflammation? Just some food for thought.
Isn't there a kappa to lambda test that would test light chains?
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Isn't there a kappa to lambda test that would test light chains?
Yes in urine or serum and papers stating the half-life should be around 2-6 hours.
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Isn't there a kappa to lambda test that would test light chains?
Yes in urine or serum and papers stating the half-life should be around 2-6 hours.
Do it!
No pressure though I know you've been doing alot of tests lately and its probably super expensive.
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Btw ECP testing will not happen, there was miscommunication and there is actually no place in the Netherlands that has this test.
I don't know whether I should do more testing perhaps other people could test for light chains, we have >700 members.
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They do the kappa to lambda test for light chains in:
The US
https://www.labcorp.com/help/patient-test-info/serum-free-light-chains
London
http://www.viapath.co.uk/our-tests/serum-free-light-chains-sflc
Belgium (near Maastricht, The Netherlands)
https://www.zol.be/klinisch-laboratorium/labogids/analyse/vrije-kappa-en-lambda
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Btw ECP testing will not happen, there was miscommunication and there is actually no place in the Netherlands that has this test.
I don't know whether I should do more testing perhaps other people could test for light chains, we have >700 members.
Maybe you should start aiming for treatment. I personally ordered Quercitin and Luteolin I read some where that these two are actually stronger mast cell stablizers than Ketotifen and sodium chromoglycate. If what I suffer from is truely MCAS then these have to work.
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Neuroprotek: https://www.ebay.nl/itm/222802626661
2 capsules min per 20 Kg = 6 capsules per day. 1 bottle = 60 capsules. 1 month of usage = 3 *58 > 150 euro per month.
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Neuroprotek: https://www.ebay.nl/itm/222802626661
2 capsules min per 20 Kg = 6 capsules per day. 1 bottle = 60 capsules. 1 month of usage = 3 *58 > 150 euro per month.
I'm going for these ( https://www.amazon.com/gp/aw/d/B00S59NYT2/ref=mp_s_a_1_2_a_it?ie=UTF8&qid=1542826151&sr=8-2-spons&keywords=quercetin&psc=1&smid=A310IKNCY4UOM7 )
And ( https://www.amazon.com/Swanson-Luteolin-Cognitive-Longevity-Supplement/dp/B00ELM5EFE )
Probably will cost me 30$ a month but we'll see.
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Ordering from the company itself is much cheaper and you will get a discount when ordering more of them: https://algonot.com/products/
Your selection contains far more quercetin and more rutin per capsule but it got 50% less luteolin per capsule compared to neuroprotek. Luteolin is a more potent stabilizer than the other two. Methoxy-luteolin is even better but I don't know where to find that one. Theoharides recommend a minimal daily dose for patients, spread throughout the day, of 200 mg Luteolin per 20 kg.
So if you are weighing at least 60 kg then in that case you will need at least 600 mg/day, this means 12 of your Swanson luteolin complex capsules or 6 of the neuroprotek capsules. But the 500 mg quercetin is relatively high dosed so I don't know if that can out balance the issue if you decide to take less luteolin capsules. These brands however do not state the purity of the ingredients though, that's another issue.
Discussion about Neuroprotek: https://youtu.be/6gfTFwJgIVQ?t=6001
The reason why Quercetin and Rutin being added: https://youtu.be/6gfTFwJgIVQ?t=6194
Dosage adults and children plus phenolic intolerance discussion: https://youtu.be/6gfTFwJgIVQ?t=6534
Discussion about Brain Gain and people with methylation related mutations: https://youtu.be/6gfTFwJgIVQ?t=6678
MCAD patients with fatigue and muscle pain; FibroProtek: https://youtu.be/6gfTFwJgIVQ?t=6758
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Ordering from the company itself is much cheaper and you will get a discount when ordering more of them: https://algonot.com/products/
Your selection contains far more quercetin and more rutin per capsule but it got 50% less luteolin per capsule compared to neuroprotek. Luteolin is a more potent stabilizer than the other two. Methoxy-luteolin is even better but I don't know where to find that one. Theoharides recommend a minimal daily dose for patients, spread throughout the day, of 200 mg Luteolin per 20 kg.
So if you are weighing at least 60 kg then in that case you will need at least 600 mg/day, this means 12 of your Swanson luteolin complex capsules and only 6 of the neuroprotek capsules. But the 500 mg quercetin is relatively high dosed so I don't know if that can out balance the issue if you decide to take less luteolin capsules. These brands however do not state the purity of the ingredients though, that's another issue.
Idk, I'm just gonna chuck the pills in to my mouth and see where that'll get me. I've already ordered them anyways.
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BrainGain and FibroProtek contain even more luteolin.
About the light chains; IgG4 could elevate this level. Since this level is high in my case one time testing is not enough. I need to test it multiple times to see if it changes in time, if not, then the IgG4, which has a long half-life, could be responsible for elevation because it's broken down into light chains. Someone with POIS and without elevated immunoglobulins is a better candidate for testing light chains.
It's also strange I feel better outside at sub-zero temperatures, I mean immediately. I actually can feel a good muscle pain after riding a bicycle, it feels like there is a repair process going on after exercise outside which I normally don't feel. Higher temperatures surpresses this effect, it's like there is a competition between inflammation/destroying and repairing muscles. Or muscles tend to get more blood volume per sec due to vasoconstrictive effects from the cold. It's mostly noticable in the upper leg/quadriceps, low dose hydrogen peroxide did a similar thing to the muscles. I also tend to recover faster from POIS during sub zero temperatures, I need to dress properly and don't shiver because of the cold though. Plus less food reactions and the brain feels a bit lighter in a good way.
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BrainGain and FibroProtek contain even more luteolin.
About the light chains; IgG4 could elevate this level. Since this level is high in my case one time testing is not enough. I need to test it multiple times to see if it changes in time, if not, then the IgG4, which has a long half-life, could be responsible for elevation because it's broken down into light chains. Someone with POIS and without elevated immunoglobulins is a better candidate for testing light chains.
It's also strange I feel better outside at sub-zero temperatures, I mean immediately. I actually can feel a good muscle pain after riding a bicycle, it feels like there is a repair process going on after exercise outside which I normally don't feel. Higher temperatures surpresses this effect, it's like there is a competition between inflammation/destroying and repairing muscles. Or muscles tend to get more blood volume per sec due to vasoconstrictive effects from the cold. It's mostly noticable in the upper leg/quadriceps, low dose hydrogen peroxide did a similar thing to the muscles. I also tend to recover faster from POIS during sub zero temperatures, I need to dress properly and don't shiver because of the cold though. Plus less food reactions and the brain feels a bit lighter in a good way.
I mean, yeah cold showers for me do wonders. It helps relieve inflammation quicker.
I'm kinda curious though why doesn't NSAID work for our case of inflammation. For example why can't celebrex fix your muscle inflammation ?
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BrainGain and FibroProtek contain even more luteolin.
About the light chains; IgG4 could elevate this level. Since this level is high in my case one time testing is not enough. I need to test it multiple times to see if it changes in time, if not, then the IgG4, which has a long half-life, could be responsible for elevation because it's broken down into light chains. Someone with POIS and without elevated immunoglobulins is a better candidate for testing light chains.
It's also strange I feel better outside at sub-zero temperatures, I mean immediately. I actually can feel a good muscle pain after riding a bicycle, it feels like there is a repair process going on after exercise outside which I normally don't feel. Higher temperatures surpresses this effect, it's like there is a competition between inflammation/destroying and repairing muscles. Or muscles tend to get more blood volume per sec due to vasoconstrictive effects from the cold. It's mostly noticable in the upper leg/quadriceps, low dose hydrogen peroxide did a similar thing to the muscles. I also tend to recover faster from POIS during sub zero temperatures, I need to dress properly and don't shiver because of the cold though. Plus less food reactions and the brain feels a bit lighter in a good way.
For me it’s the opposite. My POIS is 75% worse during winter than during summer. For me it would be better to abstain the whole winter. For my POIS. But also for prostate infections. They are worse during winter. Hot showers help me. Cold showers kill me. During summer I can be sexual active once every week. During winter when I am sexual active once a month POIS and UTI kill me.
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I had some kind of flare up yesterday outside of POIS. It happened after a big meal. It felt like I was getting wrecked over the majority of my body but without pain. It starts smoldering on the background but slowly builds up to higher intensity. My brain also felt busy. When I get these things I always get the impression my own body is attacking itself. This process went on for a couple of hours. It did leave the organs alone except for the end where I felt a short stabby pain in my spleen before it all ended.
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I was thinking of taking small dosages of epinephrine for POIS but apparently it is not allowed to be sold in pharmacies, and EpiPens are not available in Iraq.
God demn it all!!!!
I've literally tried everything and nothing works for me. My last hope are flavanoids. If not, I don't know.
I think I'm screwed.
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I was thinking of taking small dosages of epinephrine for POIS but apparently it is not allowed to be sold in pharmacies, and EpiPens are not available in Iraq.
God demn it all!!!!
I've literally tried everything and nothing works for me. My last hope are flavanoids. If not, I don't know.
I think I'm screwed.
Nas, there is always hope. I felt hopeless, too, until I came to this forum, then found some relief. We are all with you to find the help you need.
Best,
Demo
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Nas, dont give up!
As more i read from this mast atac link i posted i am more convinced that we
coud hawe hawe difertent tipes of mcas, from COMA SLEAP, like some poiser describe,
to all odher similar symptomeslike brain fog , trigers on hot bath, cold bath,
hot wether, cold weather...
choligeric rebound....
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Yes, I agree. Ir al also suspecting about MCAS. Or something really similar... I already contacted an Mast Cell Disorders specialist. But have to wait at least until Next monday in order he returns to work. He is outside now. I am trying to have a little relief taking 60mg of etoricoxib, and Diazepam 5mg (each night) just before going sleep. My trigger apart any release (preseminal or seminal liquid) it is also pressure. Just by sitting down or laying down on bed to sleep. So I am facing a very dificult situation as well... Every night when going sleep is very difficult moment. Some nights I can only sleep for only 3 or 4 hours. Horrible situation. Hope this MCAS specialist may help as soon as possible.
If he has success with diagnosing me MCAS Maybe we are more near to suspect POIS is anyway linked to MCAS...
Don't give up Nas!!!
Will continue updating on my progress on diagnosing MCAS...
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Thanks everyone for encouragements.
I'm currently looking for a medical alternatives to epinephrine. So I'm thinking of adrenergic agonists; they basically do epinephrine's job of constricting the blood vessels to fight off inflammation.
I'm not sure what to take though there are many types. I've contacted my doctor for prescription but she did not answer yet.
What do you people suggest? I'm looking for commonly sold adrenergic agonists. Especially those that are prescribed for vasoconstriction.
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Thanks everyone for encouragements.
I'm currently looking for a medical alternatives to epinephrine. So I'm thinking of adrenergic agonists; they basically do epinephrine's job of constricting the blood vessels to fight off inflammation.
I'm not sure what to take though there are many types. I've contacted my doctor for prescription but she did not answer yet.
What do you people suggest? I'm looking for commonly sold adrenergic agonists. Especially those that are prescribed for vasoconstriction.
I do not know if epinephrine will help against POIS. epinephrine makes the blood vessels more narrow. Some guys havd succes with niacin because it makes the blood vessels more wide.
And be carefull of epinephrine addiction.
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Thanks everyone for encouragements.
I'm currently looking for a medical alternatives to epinephrine. So I'm thinking of adrenergic agonists; they basically do epinephrine's job of constricting the blood vessels to fight off inflammation.
I'm not sure what to take though there are many types. I've contacted my doctor for prescription but she did not answer yet.
What do you people suggest? I'm looking for commonly sold adrenergic agonists. Especially those that are prescribed for vasoconstriction.
I do not know if epinephrine will help against POIS. epinephrine makes the blood vessels more narrow. Some guys havd succes with niacin because it makes the blood vessels more wide.
And be carefull of epinephrine addiction.
It will help the blood vessels become constricted and thus block inflammatory action. That's how epinephrine soothes the alergic reaction. Don't worry though I won't have access to it.
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Thanks everyone for encouragements.
I'm currently looking for a medical alternatives to epinephrine. So I'm thinking of adrenergic agonists; they basically do epinephrine's job of constricting the blood vessels to fight off inflammation.
I'm not sure what to take though there are many types. I've contacted my doctor for prescription but she did not answer yet.
What do you people suggest? I'm looking for commonly sold adrenergic agonists. Especially those that are prescribed for vasoconstriction.
I do not know if epinephrine will help against POIS. epinephrine makes the blood vessels more narrow. Some guys havd succes with niacin because it makes the blood vessels more wide.
And be carefull of epinephrine addiction.
It will help the blood vessels become constricted and thus block inflammatory action. That's how epinephrine soothes the alergic reaction. Don't worry though I won't have access to it.
What about the rebound? In The Netherlands you have to call the alarm number after using the epipen. So a doctor or nurse can treat you.
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Thanks everyone for encouragements.
I'm currently looking for a medical alternatives to epinephrine. So I'm thinking of adrenergic agonists; they basically do epinephrine's job of constricting the blood vessels to fight off inflammation.
I'm not sure what to take though there are many types. I've contacted my doctor for prescription but she did not answer yet.
What do you people suggest? I'm looking for commonly sold adrenergic agonists. Especially those that are prescribed for vasoconstriction.
I do not know if epinephrine will help against POIS. epinephrine makes the blood vessels more narrow. Some guys havd succes with niacin because it makes the blood vessels more wide.
And be carefull of epinephrine addiction.
It will help the blood vessels become constricted and thus block inflammatory action. That's how epinephrine soothes the alergic reaction. Don't worry though I won't have access to it.
What about the rebound? In The Netherlands you have to call the alarm number after using the epipen. So a doctor or nurse can treat you.
As I said, I'm not going to use it.
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Hi Nas,
I am not an expert nor specialist.
As far as I know. Epinephrine (or adrenaline) It is used to fight an anaphilactic shock. When having an anaphilactic shock, blood pressure is becoming too low. Epinephrine fights this situation due to vasoconstriction. But, sicencerely don't know if it also fights inflamation.
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Hi Nas,
I am not an expert nor specialist.
As far as I know. Epinephrine (or adrenaline) It is used to fight an anaphilactic shock. When having an anaphilactic shock, blood pressure is becoming too low. Epinephrine fights this situation due to vasoconstriction. But, sicencerely don't know if it also fights inflamation.
Well vasoconstriction is the method in which Epinephrine fights off inflammation, as the blood vessels vasodilate they enable the Endothelial walls to expand and thus enable white blood cells to deal with the infection. Inflammatory mediators' job is to signal to the Endothelium that there is an infection that needs to be delt with and this way in a sense it is anti-inflammatory.
But as I said Epinephrine is not available in pharmacies and as it turns out I can't even find Ephidrine. So this whole adregenic agonist thing is not going to be available to me.
My last hope for now are flavanoids, if they also don't work then I might not really have an issue with Mast Cells at all.
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Yesterday I visited an allergologist who had been working for some time with an expert in mast cell disorders. I told her I was talking to him not long ago, and he recommended me to see her. For now, she has asked me to do a blood test to check the blood level of tryptase. And she has also prescribed some disodium cromoglycate capsules. There is a center specialized in mastocyte disorders a few kilometers from my house. But I can only go there if she refers me to that hospital. I do not know very well what it depends on that she ends up referring me to that hospital. Since you can also have a mast cell disorder even if the tryptase level is low or normal. I'll keep you updated. The analytics will be done on December 20 next. And I will see her again on January 10, 2019.
If I am finally diagnosed with some mast cell disorder, we may think that POIS is really linked in some way with mast cell disorders. And maybe it could give us some clues to investigate more about POIS.
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Yesterday I visited an allergologist who had been working for some time with an expert in mast cell disorders. I told her I was talking to him not long ago, and he recommended me to see her. For now, she has asked me to do a blood test to check the blood level of tryptase. And she has also prescribed some disodium cromoglycate capsules. There is a center specialized in mastocyte disorders a few kilometers from my house. But I can only go there if she refers me to that hospital. I do not know very well what it depends on that she ends up referring me to that hospital. Since you can also have a mast cell disorder even if the tryptase level is low or normal. I'll keep you updated. The analytics will be done on December 20 next. And I will see her again on January 10, 2019.
If I am finally diagnosed with some mast cell disorder, we may think that POIS is really linked in some way with mast cell disorders. And maybe it could give us some clues to investigate more about POIS.
Good luck frenab! All the Mast Cell specialists who I've talked to also think that POIS is liked with MCAS.
Also it's very important to make the tests while you have POIS symptoms, don't take no remedy after orgasm just let all the mediators be released so they are detectable.
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This MCAS >><< POIS possibility is getting interesting!
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Yesterday I visited an allergologist who had been working for some time with an expert in mast cell disorders. I told her I was talking to him not long ago, and he recommended me to see her. For now, she has asked me to do a blood test to check the blood level of tryptase. And she has also prescribed some disodium cromoglycate capsules. There is a center specialized in mastocyte disorders a few kilometers from my house. But I can only go there if she refers me to that hospital. I do not know very well what it depends on that she ends up referring me to that hospital. Since you can also have a mast cell disorder even if the tryptase level is low or normal. I'll keep you updated. The analytics will be done on December 20 next. And I will see her again on January 10, 2019.
If I am finally diagnosed with some mast cell disorder, we may think that POIS is really linked in some way with mast cell disorders. And maybe it could give us some clues to investigate more about POIS.
My POIS doctor said that it is possible that POIS has to do something with mast cells. He also thinks that herpes is involved. And he said it is no suprise that some POIS-patients have candida. He said that POIS makes your immune system weak, so that gives candida the chance to grow. He gave me Fluconazole (Diflucan) for my candida. I hope it works.
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I also hope that MCAS or some other type of mast cell disorder is linked to POIS.
Thanks Nas for wishing me luck and for your advice. Apart from POIS, I also sufer an Activation Syndrome that Muon explained me some time ago here un this thread.
I thank you all. I think that if we fight together this difficult situation we will have many more options to discover something that each one separately.
I hope that soon we will know if indeed MCAS or some other mast cell disorder has or does not relate to POIS. I also think that it is very likely It is linked to POIS.
I will keep you all updated.
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Yesterday in the afternoon I begun taking Disodium cromoglycate.
According to the drug's prospectus, disodium cromoglycate stabilizes mast cells. preventing them from releasing mediators, such as histamine, prostaglandins and many others ...
It also says that the effect takes time to be effective in one or two weeks.
If the Activation Syndrome I suffer is MCAS, hopefully I will find relief in one or two weeks.
I will keep you updated.
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Yesterday in the afternoon I begun taking Disodium cromoglycate.
According to the drug's prospectus, disodium cromoglycate stabilizes mast cells. preventing them from releasing mediators, such as histamine, prostaglandins and many others ...
It also says that the effect takes time to be effective in one or two weeks.
If the Activation Syndrome I suffer is MCAS, hopefully I will find relief in one or two weeks.
I will keep you updated.
Interesting Fernab. Keep us updated on your results.
I use natural mast cell stabilizers, like quercetin and L-theanine in my pre-pack, and which is still efficient for me, after almost 4 years.
Two years ago, I have posted a list of natural mast cells stabilizers, at https://poiscenter.com/forums/index.php?topic=2372.msg19856#msg19856
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Yesterday in the afternoon I begun taking Disodium cromoglycate.
According to the drug's prospectus, disodium cromoglycate stabilizes mast cells. preventing them from releasing mediators, such as histamine, prostaglandins and many others ...
It also says that the effect takes time to be effective in one or two weeks.
If the Activation Syndrome I suffer is MCAS, hopefully I will find relief in one or two weeks.
I will keep you updated.
Interesting Fernab. Keep us updated on your results.
I use natural mast cell stabilizers, like quercetin and L-theanine in my pre-pack, and which is still efficient for me, after almost 4 years.
Two years ago, I have posted a list of natural mast cells stabilizers, at https://poiscenter.com/forums/index.php?topic=2372.msg19856#msg19856
What do you think about using natural mast cell stabilizer everyday
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For now, my main goal is to try to diagnose some type of mast cell disorder. for example MCAS, or some similar one.
To achieve this, I am trying to follow, for now, the advice of specialists in mast cell disorders.
if I get it diagnosed. for example, MCAS. I think there would be a lot of possibilities that POIS was something linked in some way to MCAS.
That is just what I am trying. For the moment I will keep following specialists advice. But in the long term. If I could also try natural stabilizers. Why not. It is just a question of finding something that is effective to relieve and control the discomfort.
But as I say. my main objective is to check if something like MCAS is diagnosable in someone who suffers POIS.
Today, MCAS is diagnosable. POIS no.
If it turns out that the specialists tell me that I do have MCAS. Could it be that POIS is something linked to MCAS or another form of mast cell disorder? This is what I am really looking for.
If this is achieved. Any way to stabilize the mast cells would be valid. Looking for the best alternative. In terms of effectiveness, health and price.
Hopefully something is achieved following this way. I'll let you know.
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Interesting Fernab. Keep us updated on your results.
I use natural mast cell stabilizers, like quercetin and L-theanine in my pre-pack, and which is still efficient for me, after almost 4 years.
Two years ago, I have posted a list of natural mast cells stabilizers, at https://poiscenter.com/forums/index.php?topic=2372.msg19856#msg19856
Thank you Quantum. Will keep it in mind if I finally find any relief with Mast Cell stabilizers. Will let you know.
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Really hope Fernab comes back with positive results.
I think for me until Querecitin and Luteolin arrive and I would see their effect my self. I think I've exhausted all of my options when it comes to treatment. I simply have no idea what can solve POIS, at least in my case. Just the fact that anti-histamines and NSAID's all do not really work for me is mind boggling. You just name anything people tried in this forum and I have tried it. All simply did not work.
If Fernab was successful with his treatment, perhaps that confirms that POIS is a part of Mast Cell Activation family of diseases.
For now I just don't know, I'm lost, confused, sad and miserable. I don't know where to go from here.
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Nas, since 2007, when the forums began we are all still “lost, confused” but “sad, miserable” are something we can at least exert some control over. I know it’s difficult. But whatever you suffer, I can tell you there is someone much worse. One member self-castrated in an unsuccessful attempt to cure POIS. Personally, I approached it with FURY, (over a ‘wasted life’) putting much of my energy into this forum for 12 years. I posted 3,000+ times here, 8,000+ times at our predecessor forum = 11,000+ posts!
That has helped me.
All the best
Demo
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Demo
At least you were able to eventually manage POIS, I personally could not. I am forced to live every single day in solitude, overthinking all the friends I abandoned and all the relationship opportunities I threw away. And when I eventually get to heal up from POIS and regain my social skills, then it's a fight against my instincts whether I masturbate or keep my self social. Which is a fight I almost always loose. And it's all so demn frustrating when I have turned every nook and cranny when it comes to POIS. In fact I might make a complete theory of POIS soon, because the Mast Cell theory pretty much concludes everything. Yet, I'm still not able to find a remedy. Sigh.
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Demo
At least you were able to eventually manage POIS
Not always, Nas! Sometimes, depending on other circumstances, I occasionally still suffer POIS torture.
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POIS is a rare disease. And very complex.
We all share the same trigger: a release.
After this trigger, each poiser, or group of poisers have a different group of symptoms.
In my case, I have more than one trigger. The release, at present, is not the only way I open the door to suffer my symptoms. This is not happenning like this, since I began suffering POIS. I took 4 years and a half to realize my Illness was POIS. Shortly after discovering that I have POIS, when I ride a sleigh, something new starts to happen to me. that had not happened to me until then. A new trigger appears causing me to suffer some of the POIS symptoms. This new trigger is as simple as exerting pressure when sitting. Only by the weight of my own body on the perineal area. I know it sounds really strange. But that's how it is in my case.
POIS in itself is very strange too. how many forms of POIS are there? Do we know it?
After asking here in this thread, about this strange new trigger I began suffering. Muon told me about MCAS. It was the first time I heard of It. I searched for information about it. And realized that this Illness it was a possible piece to solve this huge puzzle.
Without me saying anything to Muon about having also problems when wearing tight clothes. For example the boxer type elastic underwear. That causes me terrible pain and testicular inflammation after a few hours wearing it. Apart of sitting down, wearing tight clothes began also to be a problem for me. MCAS was something that could explain all these new situation.
Mast Cell Disorders, is a group of deseases. Allergy itself it's a Mast Cell Disorder.
On August the 4th. I had my last release. And since then I decided not to have any more releases. The reason: I got a lot worse. in the following days I discover unfortunately that the area that when pressed by my own weight has become greater. It has spread more. now it not only affects the perineal area (problems to sit down). It also begins to affect my buttocks and lower back. With which, I begin to have problems so I can lie down in bed. Problems even to be able to sleep.
I can not go to work. I can not practically do anything. I just survive. I do the basic functions. I sleep with many difficulties. sometimes very little or nothing. I do not want to be dramatic. but it is as I tell it. I depend on third parties to be able to move. To go see the specialists.
I am in a really difficult situation. But honestly, I hope to find a diagnosis through specialists in mast cell disorders. I hope It. And need it.
Some of us have had more luck. Maybe others less. Others have taken a long time to get some relief. And still have difficult moments (as Demo explained).
This is just like this because POIS is very complex.
But in spite of all this. I think this will be resolved sooner or later. It's just a matter of time. And to contribute a little and support each other.
Tomorrow I will go to do an analytic to check my tryptase level. I think it's part of the diagnostic protocol. On January 8, I will go to see a specialist in mast cell disorders. I will tell you about the advances. Wishing that we discover something interesting.
Don't give up Nas: imagine we did not had this forum.... It would be much worse, do not you think so?
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Fernab
If you are going to do test please make the complete Mast Cell Activation mediators test including:
-serine proteases, such as tryptase and chymase
-histamine (2?5 picograms per mast cell)
-serotonin
-proteoglycans, mainly heparin (active as anticoagulant) and some chondroitin sulfate proteoglycans
-adenosine triphosphate (ATP)
lysosomal enzymes:
-β-hexosaminidase
-β-glucuronidase
-arylsulfatases
newly formed lipid mediators (eicosanoids):
-thromboxane
-prostaglandin D2
-leukotriene C4
-platelet-activating factor
cytokines:
-TNF-α
-basic fibroblast growth factor
-interleukin-4
-stem cell factor
-chemokines, such as eosinophil chemotactic factor
The most important ones are Histamine, Tryptase, Heparin, PGD2, leukotriene C4, TNF-α and IL-4.
Make sure you have an Orgasm before the day of test and do not have any medication what so ever until you complete the test.
Good luck and hopefully we can finally progress medically in defining POIS and potential POIS treatments.
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Nice to hear Fernab that you making apoitments for mcas...
I am in the same situation like you, when you mention presures on siting and
walking and on body moves.( i am suufering from this long time),
but unfortinatly i hawe the same situation betwean sholders( on spine back)
and somethimes on spine move i hawe breath
taken of( astma like), difuculity swalowing when
this (inflamation worse in pois aspesualy), dificulity laying down and sleping,
because i stayed out of breath in most positions, brathing muscules go in spasm
, they stuck and sometimes i nead 4,5 hours to calm body find position and sleap.
Like mystenia gravis symptomes.(nerwes do not fire properly, tired muscules).
Like somthing in celbrospinall fluid not workin properly (inflamation).
A this geting worse because of bloating, bloating make presure on my lungs
and heart, because of this i hawe heart palpilations , espesualy when nerwes
is in exitatory condition in pois.(tread a lot of things to get rid of bloating).
All this worse in ewning etc...
For mcas, i trayed natural but withouth suscess-curcumin , origano, rosemarin etc...
Antihistamines not working to...
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Nice to hear Fernab that you making apoitments for mcas...
I am in the same situation like you, when you mention presures on siting and
walking and on body moves.( i am suufering from this long time),
but unfortinatly i hawe the same situation betwean sholders( on spine back)
and somethimes on spine move i hawe breath
taken of( astma like), difuculity swalowing when
this (inflamation worse in pois aspesualy), dificulity laying down and sleping,
because i stayed out of breath in most positions, brathing muscules go in spasm
, they stuck and sometimes i nead 4,5 hours to calm body find position and sleap.
Like mystenia gravis symptomes.(nerwes do not fire properly, tired muscules).
Like somthing in celbrospinall fluid not workin properly (inflamation).
A this geting worse because of bloating, bloating make presure on my lungs
and heart, because of this i hawe heart palpilations , espesualy when nerwes
is in exitatory condition in pois.(tread a lot of things to get rid of bloating).
All this worse in ewning etc...
For mcas, i trayed natural but withouth suscess-curcumin , origano, rosemarin etc...
Antihistamines not working to...
HOD I'm getting Quericitin and Leutolin, maybe give them a try? These are documented Mast Cell stabilizers, and fairly they are my last hope of ever finding a remedy.
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Nas, thank you for all that information.
I see that you have read and inquired a lot about MCAS and the different types of related tests. I will take it into account if necessary. But if I've learned anything since I've been to so many doctors, it's that they do not like you to give them instructions on what to do and how to do it. I have learned that this can be very counterproductive. And get just the opposite of what we need.
At least at the beginning I think I should let them direct the process of what tests and how to do them.
I've been said that the doctor I will visit on January 8th is someone with experience and good knowledge about mast cell disorders. Will see if this is the case.
In spite of everything I believe that the information that you have given me is very valuable and I will take it into account in case of need.
I also have documents from a Dr called Theoharis Theoharides. This Dr is from Yale Universitaria If I am not wrong. Muon gave us a link of him taking about MCAS around 2 hours. Really interesting.
Here is a little fragment of his writings about Mast Cells (abreviated as MCs) and some of the problems they are able to cause:
MCs are best known for their role
in immediate IgE-mediated, allergic
responses in anaphylaxis, food allergy,
venom allergy, and asthma. Recent
reports have also implicated MCs in
nonallergic disorders, including head-
ache syndromes, irritable bowel syn-
drome, non-celiac gluten enteropathy,
osteoporosis, autoimmune syndromes,
neuropsychiatric disorders, and intersti-
tial cystitis [Theoharides et al., 2015].
Apart of what I already explained yesterday I am suffering. coincidentally, I also suffer non-celiac gluten enteropathy. And have a lot of skin manifestations. Redness that appear and disappear in a short time. Itchings sometimes in many different parts of all my body, eczemas, peelings, etc.
I have been diagnosed curiously of dermographism. Something that it is also associated to Mast Cell Disorders. But despite so many things that suggest that it may be some kind of mast cell disorder. it's not worth thinking about. You have to prove it. And in that sense I think it's best to put yourself in the hands of professionals in the field.
HOD, It is true, we have a lot of similar symptoms. Strong palpitations ( I've been said that histamine could be causing it).
respiratory distress (Something similar to asthma) and even chest pain if symptoms become very strong. Most of the time I have been told (by so many doctors) that this is because of anxiety. Instead of a high level of histamine. But recently, a doctor, told me that effectively histamine can also cause that effect. I have always refused to admit that it is a cause for anxiety. I have asked if this is something that can be proved in any way. Unfortunately, I have always been told that no. But I know it almost certainly is not due to anxiety. I have several reasons that I could explain in detail. but I practically never have enough time to be able to explain well something so complex. With doctors you have to be very concise.
In order to stabilize the mast cells, I am taking the drug that the specialists have indicated to me: Disodium cromoglycate. Quantum told me that he takes on his prepack since some time ago some natural Mast Cell stabilizers. I will consider for later in case. At first I did feel that I noticed some improvement but also It is said that the effect can take between one to two weeks. For now only one week has passed. And I'm not sure if It is doing anything. I will continue taking it anyway. I also know that I was testing quercetin a long time ago. but I do not know if I spent a little time taking it or what. but I did not notice much. For now, what I do notice that helps me say to 40 or 50% is a powerful inhibitor of Cox 2, called etoricoxib. Which indicates to me in some way that some inflammation I have to have, even though it is mysteriously not detected. As many times we have commented in this forum.
-
https://www.mastattack.org/associated-conditions/
Asociated condition, almost all we mention on forum.
What abou anti ige treatmant, she sed that some peoples helped medicine like
xolair https://en.wikipedia.org/wiki/Omalizumab
Yeah Fernab, in mcas it is all about histamine.
I think that reaction on arosaul is exses in us, because of hudge
rection of histamine in brain, then body.
It is exces, or lack histamine in brain, then on arosaul or O, hited hardly
cascade of symptomes, i dotnt know is it posible to mesure histamine lewels
in brain.
-
https://www.mastattack.org/associated-conditions/
Asociated condition, almost all we mention on forum.
What abou anti ige treatmant, she sed that some peoples helped medicine like
xolair https://en.wikipedia.org/wiki/Omalizumab
Yeah Fernab, in mcas it is all about histamine.
I think that reaction on arosaul is exses in us, because of hudge
rection of histamine in brain, then body.
Is it exes, or lack of histamine in brain then hited hardby arisaul i do know,
dotnt know is it posible to mesure.
I really like this blog, I tried to contact the lady who run the blog but she didn't answer unfortunately. She had a post talking about POIS briefly and she also connected to POIS here (http://www.mastattack.org/2016/01/the-sex-series-part-five-seminal-allergy-post-orgasmic-illness-syndrome-and-burning-semen-syndrome/)
She give the point that perhaps semenal fluid it self could be the trigger for Mast Cell activation due to it containing cytokines.
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Sounds really interesting. It is something like this that I am suspecting.
The link does not work for me. But anyway is exactly what I think it could be.... But first It has to be proved...
Nice web!
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Sounds really interesting. It is something like this that I am suspecting.
The link does not work for me. But anyway is exactly what I think it could be.... But first It has to be proved...
Nice web!
Fixed!!
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It is very mind boggling though, how that all evidence related to histamine yet anti-histamines seem to not work for us. I've recently tried Betahistine, which is a histamine h3 antagonist. It does cause slight brain fog at the beginning bit it goes away. I have not had success with it after orgasm yet. Perhaps we need more time of anti-histamines treatment for it to be effective?
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As far as I know there are hundreds of different mediators (little molecules) released by Mast Cells when they are activated.... I don't know if all of them can be tested or detected today.
This things go beyond my knowledge. Scientists who study this type of things are the ideal people to ask for, or specialists involved in the world of research ... I suppose!
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https://www.researchgate.net/profile/Anupam_Aich1/publication/285815837/figure/fig1/AS:303527470616576@1449377996721/Mast-cell-associated-disease-specific-pain-syndromes-mast-cell-activation-and-its-common.png
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impressive the number of problems and diseases associated with mast cells
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https://healinghistamine.com/the-mold-histamine-link/
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https://www.researchgate.net/figure/Mast-cell-activation-in-response-to-viral-infection-Mast-cells-are-classically-known-for_fig1_277780530
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https://tmsforacure.org/wp-content/uploads/MCD-Symptoms-Infographic.pdf
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https://tmsforacure.org/wp-content/uploads/Mast-Cell-Disease-Triggers-Infographic-1.pdf
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Wery nice blog all expleined simple.
When Infection Triggers an Auto-Inflammatory Reaction
http://tenaciouspt.blogspot.com/2016/10/histamine-intolerance-may-be-affecting.html
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Wery nice info on mcas on whole this web and botom of this link.
https://www.lymedisease.org/lyme-sci-mcas-agony/
How I healed from Lyme disease and mast cell activation syndrome
https://www.lymedisease.org/savannah-lyme-disease-mast-cell/
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Nice web , all expleined about histamine intolerance syndrome.
All this seems to relate to us.
https://www.marioninstitute.org/histamine-intolerance-syndrome/
Enyithing that relate to detox fases, histamine clearance methylation support
mc stabilisation, its seams to help poisers a lot.
https://poiscenter.com/forums/index.php?topic=1148.15
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In order to stabilize the mast cells, I am taking the drug that the specialists have indicated to me: Disodium cromoglycate. Quantum told me that he takes on his prepack since some time ago some natural Mast Cell stabilizers. I will consider for later in case. At first I did feel that I noticed some improvement but also It is said that the effect can take between one to two weeks. For now only one week has passed. And I'm not sure if It is doing anything. I will continue taking it anyway. I also know that I was testing quercetin a long time ago. but I do not know if I spent a little time taking it or what. but I did not notice much. For now, what I do notice that helps me say to 40 or 50% is a powerful inhibitor of Cox 2, called etoricoxib. Which indicates to me in some way that some inflammation I have to have, even though it is mysteriously not detected. As many times we have commented in this forum.
Fernab how are you now? I want to aks my specialist to give me Nalcrom (Sodium cromoglycate) too. Because of hives. I also hope that it will help me a bit against POIS and bad sleep (high histamine means bad sleep). I also try to eat less food with high histamine.
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Ok, so there is a way I'm knowing my anti-MCAS pack is working, this is something I also discovered with Ketotifen. Apparently, all these years of histamine release in my brain gave me a form of histamine tolerance. After I take the pack I start feeling sleepy. Like today I only took Quercetine and Luteoline without the anti-histamines and that made me sleepy as fuck. I've also noticed that with Ketotifen. Now I know that Ketotifen is known for inducing sleepiness, but in my case it cripples me. I've known people from MCAS FB group who say that Ketotifen barely does anything to them. So perhaps this is a good thing? I'm reducing all that histamine that is stuck in my brain? IDK.
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Ok, so there is a way I'm knowing my anti-MCAS pack is working, this is something I also discovered with Ketotifen. Apparently, all these years of histamine release in my brain gave me a form of histamine tolerance. After I take the pack I start feeling sleepy. Like today I only took Quercetine and Luteoline without the anti-histamines and that made me sleepy as fuck. I've also noticed that with Ketotifen. Now I know that Ketotifen is known for inducing sleepiness, but in my case it cripples me. I've known people from MCAS FB group who say that Ketotifen barely does anything to them. So perhaps this is a good thing? I'm reducing all that histamine that is stuck in my brain? IDK.
If ours teories is wright, that should be happennig,
try adyusting dosage an then incriese,
an test how you feeling , take your time to test.
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Hi Vandemolen,
I continue taking Disodium cromoglycate. Today or tomorrow will be for two weeks.
for now I'm not noticing a big difference. but mast cell disorders, as with POIS, are not treated equally for all patients. I will continue taking it in spite of it. I will see an Mast Cells disorder specialist on january 8th. I will decide then if it's worth continuing to take it or not and wait for another indication from the specialist.
It is true that a diet low un histamine it's also a type of treatment for some MCAS patients. Un some cases it works. I also have difficulties to sleep correctly. I suppose It would take some time until you notice any progress/good result. Let us know if you get any good result if you do a low histamine diet. Good luck with it!
Will keep you upated.
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Ok, so there is a way I'm knowing my anti-MCAS pack is working, this is something I also discovered with Ketotifen. After I take the pack I start feeling sleepy.
Hi Nas, good to know you found something that makes you feel better. I know ketotifen as a drug for allergy in eyes (itchy eyes, when pollen allergy, for instance).
If you are taking it on your own, please, take care also of side effects. Just in case.
But It is good to know...
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Hi Vandemolen,
I continue taking Disodium cromoglycate. Today or tomorrow will be for two weeks.
for now I'm not noticing a big difference. but mast cell disorders, as with POIS, are not treated equally for all patients. I will continue taking it in spite of it. I will see an Mast Cells disorder specialist on january 8th. I will decide then if it's worth continuing to take it or not and wait for another indication from the specialist.
It is true that a diet low un histamine it's also a type of treatment for some MCAS patients. Un some cases it works. I also have difficulties to sleep correctly. I suppose It would take some time until you notice any progress/good result. Let us know if you get any good result if you do a low histamine diet. Good luck with it!
Will keep you upated.
I read that it takes time before disodium cromoglycate works. But it should work after 3 weeks. I mean work as in coping with the histamine problem. I do not know it helps with POIS. Good luck.
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So apparently doctors perscribe 500mg Quercetin 3 times a day after food, Because of how Querecitin is very badly absorved in the body, nevertheless trying to bypass the BBB. So definitely will need to increase Quercetin intake.
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Hi Nas,
If you are right, maybe the reason why I did not felt any relief when I took quercitine, is because I took a very low dose.... I don't have any idea about which are the good dosage. Or if maybe it depends a bit on each person..... No idea.... Maybe you are right, I don't know. Next 8th (very soon) will see a specialist... Will let you know....
Good luck!!!...
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Good luck!!!...
You too!!
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Dose enybody of you who hawe MG symptomes tested acetylcholine receptor antibodies,
MuSK antibodies?
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Intresting thing related to MCAS conection is that i hawe non alergic cronic sinusuitis (all my life , since childhood).
Recently i dicover that some food and beavarages open my stifed nouse for several hours, no medicine cold do
that, only nasal sprays with nasty side effects.
I didnt know for years what is that in cofee that help me to feel beter and open my nouse,
because i been cofeine intolerant because of pois(in times when i didnt know whot was wrong with me,
when sewere pois atacand nerwe on the edge, put cofein in that you hawe panic atacs party).
Now i discovered that is cafeic acid tipe of polyphenol!!!
So meny benefits.
http://www.enzolifesciences.com/ALX-270-231/caffeic-acid/
https://pubchem.ncbi.nlm.nih.gov/compound/caffeic_acid
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I updated my blood test results. I added a few. My IgM is too low. But my IgA, IgE and IgG are ok. My POIS doctor told me that if IgM is too low than IgG will not function well, even that the blood result is good. A low IgM means that I am sensitive for infections. My POIS doctor thinks that the low IgM is the reason why I have a lot of UTI’s and prostate infection. There is no cure for low IgM. There are 4 options: infusion, injections, prophylactic antibiotics and Immunoglobulin Replacement Therapy. I am not a fan of antibiotics. My doctor sended me to a big hospital where there is a specialisation of immulogy. My POIS doctor does not think that when my IgM problem is under control that that will help my POIS.
Is there someone elsed who tested IgM? Would be interesting to test in and out POIS. Will IgM go up while in POIS?
More information about SIGMD:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591887/
Bloodtest Vandemolen (I combined a few bloodtest in the last years because not all things were tested in 1 blood test)
Hemotology
ESR: 3. Reference range (RR)0-15
Hemaglobin: 9.8. RR: 8.5-11
Hematocrit: 0.40. RR: 0.40-0.50
Mean Corpuscular Volume: 84. RR: 80-100
Erythocytes: 4.89. RR: 4.50-5.50
Trombocytes: 6.0. RR: 6.0
Leucocytes: 5.6. RR: 4.0-10.0
Neutrophils: 2.95. RR: 2.0-7.0
Basophilic granulocytes: 0.05. RR: 0-0.20
Eosinophilic granuloctyes: 0.15. RR: 0.00-0.45
Lymphocytes: 2.01. RR: 0.50-4.50
Moncytes: 0.41. RR: 0-0.80.
Ferritin: 54. RR: 25-250
Amalyse 92. RR: 0-99
Clininal Chemie
Urea: 3.5 (in 2016). RR: 2.5-6.5
Creatinine: 85. RR: 64-104
eGFR (MDRD): higher than 60. RR: higher than 60
eGFR (CKD-EPI): higher than 90. RR: higher than 90
Natrium: 141. RR: 135-145
Calcium: 2.59. RR: 2.15-2.65
Magnesium: 0.95 (in 2016). RR: 0.70-1.00
Uric acid: 0.37. RR: 0.20-0.38
ASAT: 29. RR: 0-34
ALAT: 26. RR: 0-44
Alkaline Phosphoatase: 56. RR: 40-120
gammaGT: 35. RR: 0-54
Tryptase: 4.6. RR: 0-11.4
Triglycerides: 2.4 (in 2016). RR: 0-2.0
Glucose: 5 (in 2016). RR: 4-6
Vitamin B12: 382. RR: 130-700
Methylmalonic serum: 221. RR: less than 350
Vitamin D (25-OH): 173. RR: higher than 50
Iron: 13. RR: 14-30
Transferrin: 2.3. RR: 2-4
Cholesterol: 7.21. RR: 2.50-6.50
LDL cholesterol: 3.6. RR: less than 2.5
HDL cholesterol: 1.0. RR: less than 1.0
Endocrinology
TSH: 8.1 RR: 0.55-4.8
Free T4: 17.5. RR: 10-26
Thyriod Peroxidase antibodies: 25. RR: less than 50
Cortisol: 0.19. RR: 0.03
Testosterone: 9.6 (in 2016). RR: 10-30
Free testosterone: 378 (in 2011). RR: 174-729
SHBG: 12 (in 2011). RR: 13-71
DHEA-S: 7.0. RR: 2.6-14
PTH: 1.6. RR: 1.6-6.8
PSA: 2.3 (in 2016). RR: 0-2.0
Immonology
C-reactive protein: 1. RR: 0-10
IgA: 1.22. RR: 0.70-4.00
iGe: 64 (in 2015). RR: 1-90
IgM: 0.26. RR: 0.40-2.30
IgG: 10.0. RR: 7.0-16.0
t-TransGlut IgA: less than 1 (in 2011). RR: 0-5
Prolactin: 0.29 (in 2011). RR: 0-0.32
Progestrone: 1.8 (in 2010). RR: 0.7-4.3
HCG + beta: less than 1 (in 2011). RR: 0-1
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I updated my blood test results. I added a few. My IgM is too low. But my IgA, IgE and IgG are ok. My POIS doctor told me that if IgM is too low than IgG will not function well, even that the blood result is good. A low IgM means that I am sensitive for infections. My POIS doctor thinks that the low IgM is the reason why I have a lot of UTI’s and prostate infection. There is no cure for low IgM. There are 4 options: infusion, injections, prophylactic antibiotics and Immunoglobulin Replacement Therapy. I am not a fan of antibiotics. My doctor sended me to a big hospital where there is a specialisation of immulogy. My POIS doctor does not think that when my IgM problem is under control that that will help my POIS.
Is there someone elsed who tested IgM? Would be interesting to test in and out POIS. Will IgM go up while in POIS?
More information about SIGMD:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5591887/
Would be interesting if another POIS-patient checks his IgM. A shortage of IgM is not common. So if anothef POIS-patient also has a shortage of IgM then maybe we are on something. Then it would be interesting if more POIS-patients check IgM.
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Would be interesting if another POIS-patient checks his IgM. A shortage of IgM is not common. So if anothef POIS-patient also has a shortage of IgM then maybe we are on something. Then it would be interesting if more POIS-patients check IgM.
It's unlikely it plays a role in POIS, results are all normal:
My IgM (https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0&preview=Muon+3-1+Igs%2BIgGsub%2Bstandard+stuff+14-08-2015.pdf)
IgM in POIS paper (https://www.sciencedirect.com/science/article/pii/S2050116118300199)
Ashwin's IgM (https://www.dropbox.com/sh/5x2qmne0p3e1jnv/AACeKjqr6peSH5hWJdUhobqda?dl=0&preview=Screenshot+at+2018-08-06+17-16-41.png)
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Would be interesting if another POIS-patient checks his IgM. A shortage of IgM is not common. So if anothef POIS-patient also has a shortage of IgM then maybe we are on something. Then it would be interesting if more POIS-patients check IgM.
It's unlikely it plays a role in POIS, results are all normal:
My IgM (https://www.dropbox.com/sh/nc2dt6pcwd5xpmu/AACyyDE6uhY1DHn1fAuxw86Ja?dl=0&preview=Muon+3-1+Igs%2BIgGsub%2Bstandard+stuff+14-08-2015.pdf)
IgM in POIS paper (https://www.sciencedirect.com/science/article/pii/S2050116118300199)
Ashwin's IgM (https://www.dropbox.com/sh/5x2qmne0p3e1jnv/AACeKjqr6peSH5hWJdUhobqda?dl=0&preview=Screenshot+at+2018-08-06+17-16-41.png)
Ok thanks. If 3 other POIS-patients have normal IgM than I think it is not related to POIS. I thought maybe it was caused by desens, but if your IgM is ok then not. People with a shortage of IgM do get often more auto immune diseases. So maybe in my personal case it could play a role why I have POIS. Or it is a secundairy problem beside POIS. Not all POIS-patients have a lot of bladder/prostate infections and UTI like me.
-
https://www.mastattack.org/associated-conditions/
Asociated condition, almost all we mention on forum.
What abou anti ige treatmant, she sed that some peoples helped medicine like
xolair https://en.wikipedia.org/wiki/Omalizumab
Yeah Fernab, in mcas it is all about histamine.
I think that reaction on arosaul is exses in us, because of hudge
rection of histamine in brain, then body.
It is exces, or lack histamine in brain, then on arosaul or O, hited hardly
cascade of symptomes, i dotnt know is it posible to mesure histamine lewels
in brain.
I asked my doctor if he can give me Xolair. Not for POIS, but for urticaria. But you never know, maybe it helps against POIS too. Xolair is by injections. So maybe he will try other medicines first.
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...There seems to be a pattern emerging in the Medical Data/test thread (https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787) show immunodeficiency in many of us POISers.
A few patterns in the data:
--4 of us have low neutrophil counts (nanna1 (http://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052), quotz (http://poiscenter.com/forums/index.php?topic=2684.msg24642#msg24642), BluesBrother (http://poiscenter.com/forums/index.php?topic=2684.msg24765#msg24765), certainlypois2 (http://poiscenter.com/forums/index.php?topic=2684.msg24532#msg24532)).
--3 of us show normal neutrophil levels (Muon, Muon's brother (http://poiscenter.com/forums/index.php?topic=2684.msg24021#msg24021), Nas).
--1 of us show low monocyte levels (quotz)
--1 of us show low Natural Killer cell (NK cells) levels (muon)
--2 of us show low lymphocyte levels (muon, fernab)
--1 of us show lymphocytes do not increase in response to lung infection (aswinpras06 (https://poiscenter.com/forums/index.php?topic=2684.msg24812#msg24812))
I am only showing data of people who self-report, but Hopeoneday has also found several cases of neutropenia in POISers posted elsewhere. Immunodeficiency diseases are rare (low prevalence, post (https://poiscenter.com/forums/index.php?topic=2695.msg24966#msg24966)), so this seems very interesting. Most of the data is on Complete Blood Counts (CBC, neutrophils), but I think Muon's low NK cell levels is the most interesting result so far. This is because NK cells are the primary virus killers of the immune system. These immune deficiencies are all associated with the innate immune system (https://en.wikipedia.org/wiki/Innate_immune_system). The innate immune cells (monocytes, neutrophils, NK cells) are the first responders to a harmful event (infection, cancer, poison, etc...). If the innate immune system fails, then the adaptive immune system (https://en.wikipedia.org/wiki/Adaptive_immune_system) (T cells, B cells, etc...) takes over and tries to control the harmful event.
I mention all this because low immunoglobulin levels are sometimes used to measure immunodeficiency diseases. But this is usually done using the IgG subclasses (IgG1, IgG2, IgG3, IgG4). Kurtosis and Muon have written a few good post on immunoglobulins...
Immunoglobulin are mostly related to the innate and adaptive immune systems...
A test that measures NK, T and B cells would probably be... informative (Lymphocyte Subset Panel Test (https://www.findlabtest.com/lab-test/blood-tests-for-heart-disease/lymphocyte-subset-panel-1-quest-7197)).
There is not enough data to confirm or disprove that POIS is a type of immunodeficiency disease. But test like this that measure Natural Killer cells, T lymphocytes and B lymphocytes can help (Lymphocyte Subset Panel Test (https://www.findlabtest.com/lab-test/blood-tests-for-heart-disease/lymphocyte-subset-panel-1-quest-7197)). If you cannot get one test that has all three cell counts, you can order them individually. A total lymphocyte count will not reveal a NK cell deficiency because NK deficiencies are compensated by T cell over-expression. Low total lymphocyte levels probably means multiple cell types are deficient.
Individual Lymphocyte test:
CD56+ or CD16+ = NK cell test (https://www.lifeextension.com/Vitamins-Supplements/itemLC505016/Natural-Killer-Cell-Surface-Antigen-CD3-CD56-Marker-Analysis-Blood-Test)
CD4+ (helper) and CD8+ (suppressor) = T cell test (https://www.findlabtest.com/lab-test/blood-tests-for-heart-disease/lymphocyte-subset-panel-4-quest-7924) also T-Lymphocyte Helper/Suppressor Profile (https://www.lifeextension.com/Vitamins-Supplements/itemLC096925/T-Lymphocyte-Helper-Suppressor-Profile-Blood-Test)
CD19+ = B cell test
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Hi all,
As I told you last january 8th I have visited a specialist. I'm sorry I could not write you before, but I've had a lot of personal difficulties
I told him my symptoms. And which is my trigger. Pressure by the pelvic área, buttocks and lumbar area.
For the moment, I said nothing about POIS. To preventing him thinking of something other than MCAS.
As a POIS sufferer I know that also any emision (seminal or preseminal) is a trigger for my symptoms. But as I explained I prefered to tell nothing about POIS.
In general, of all the set of symptoms I told him. He told me that some of them where not typical to MCAS.
But anyway, he told me that it could be due to a MCAS. So he thinks that maybe I am an MCAS sufferer.
So, he decided I do a genetic test in first place. It called something like ‘mutation in SP’ or ‘Mutation Kit study’. This genetic test will be driven by hematology ( in the hospital I went to see this specialist ).
I have to wait until hematology calls me back and they will give me then a date for blood extraction. One month after the extraction we will have the genetic result. If it turns out positive, he explained me that the probability of being a MCAS sufferer increases considerabily.
In parallel to the genetic study, he has also asked me to take two histamine inhibitors. one for H1 receptors (bilastine 20 mg/day) and another for H2 receptors (Ranitidine 150mg/day). Besides the disodic cromoglycate (200mg/8hours). and the anti-inflammatory etoricoxib (which I've been noticing for a long time It helps me a lot, 60mg whenever I feel I need it, once a day).
Here below, I add some personal reflections:
MCAS has a lot of similarities with POIS:
1.- As for POIS, there are no two patients alike. Symptoms and treatment should be unique per patient.
2.- MCAS has many different Activation triggers.
3.- Could POIS be a form of MCAS in which the trigger is any emision (seminal or preseminal)?
Will continue updating.
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By the way, my IgG levels are normal.
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Sorry. And IgM, also. Normal.
In my last blood test, curiously, my lymphocyte level is a bit low : 1.09 10E3/microL (normal range 1.2 - 4.0).
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Sorry. And IgM, also. Normal.
In my last blood test, curiously, my lymphocyte level is a bit low : 1.09 10E3/microL (normal range 1.2 - 4.0).
Great Fernab. Keep us updated about your MCAS doctor. There are MCAS-patients who have abnormal IgG, IgA or IgM levels.
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MCAS has a lot of similarities with POIS:
1.- As for POIS, there are no two patients alike. Symptoms and treatment should be unique per patient.
2.- MCAS has many different Activation triggers.
3.- Could POIS be a form of MCAS in which the trigger is any emision (seminal or preseminal)?
Will continue updating.
This is pretty much what I theorize, but the failure or the MCAS regiment to have any profound effect on my POIS is making me more skeptical. I very much appreciate what you are doing Fernab because you're pretty much working on figuring out whether Mast Cells are involved or not. But I think I'm moving towards trying to fix a hormonal issue, since nothing really is working for me when it comes to anti-inflammatory treatment, besides dexamethason.
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My lymphocyte levels are normal along with most other immune response markers. However, a couple are elevated such as basophil count and % which could indicate chronic inflammation (as would be the case with leaky gut and POIS which I have). My platelet count is high but results show platelet clumps were observed which would alter results.
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Thanks for the update Fernab. I'm also interested in T-regulatory cells because they play a role in immunological tolerance in particular self/non-self discrimination.
https://en.wikipedia.org/wiki/Regulatory_T_cell
https://en.wikipedia.org/wiki/Immune_tolerance
https://en.wikipedia.org/wiki/Central_tolerance
https://en.wikipedia.org/wiki/Peripheral_tolerance
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...one way of interpreting Habibou's neurotransmitter test (https://poiscenter.com/forums/index.php?topic=508.msg6851#msg6851) is that he has reduced functioning of his Aldehyde dehydrogenase (ALDH) enzyme (see dopamine degradation pathway, DOPAC, HVA (https://upload.wikimedia.org/wikipedia/commons/e/e7/Dopamine_degradation.svg)). I would rule out monoamine oxidase (MAO) dysfunction because his serotonin and 5HIAA are normal. I would also rule out catechol-O-methyltransferase (COMT) dysfunction because his DOPAC levels are low and his MHPG is normal. DOPAC does not depend on COMT (diagram1 (https://upload.wikimedia.org/wikipedia/commons/e/e7/Dopamine_degradation.svg)) but MHPG does diagram2 (https://commons.wikimedia.org/wiki/File:Noradrenaline_breakdown.svg)). The diagram below shows the enzymes responsible for the 3-Methoxy-4-hydroxyphenylglycol (MHPG) and Vanillylmandelic acid (VMA) parameters in his urine test:
(https://upload.wikimedia.org/wikipedia/commons/thumb/b/bd/Noradrenaline_breakdown.svg/500px-Noradrenaline_breakdown.svg.png)
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This is the perfect exapmle that this member actualy cant see that this could
be (I think that it is) couse of his pois.
I think that here is key of pois in some of us, genetics test results of curisocaracter.
https://poiscenter.com/forums/index.php?topic=2728.msg24633#msg24633
So here we see, vitamin D problem(GENETIC MUTATION)
For this reason, having MTHFR SNPs that cause undermethylation and COMT SNPs that result in lower COMT are a BAD COMBINATION.
And this-
Catechol-O-Methyltransferase (COMT) is one of several enzymes that degrade dopamine, epinephrine, and norepinephrine.
So acording to this , genetics mutations a lot of stuff in body can go wrong
MTHFR A1298C - heterozygous
VDR bsm - homozygous
COMT V158M - heterozygous
COMT H62H - heterozygous
MTRR A66G - heterozygous
This couse a low vit D
We see that LH hormone can be disturbed and this could be explanation
of LOW T in big mayority of poisers.
Degrade dopamine, epinephrine, and norepinephrine feilure.
Wery senzitiwe, toxic, on mercury exposure (note in mans only).
All expleined here:
https://selfhacked.com/blog/worrier-warrior-explaining-rs4680comt-v158m-gene/
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This is the perfect exapmle that this member actualy cant see that this could
be (I think that it is) couse of his pois.
I think that here is key of pois in some of us, genetics test results of curisocaracter.
https://poiscenter.com/forums/index.php?topic=2728.msg24633#msg24633
So here we see, vitamin D problem(GENETIC MUTATION)
For this reason, having MTHFR SNPs that cause undermethylation and COMT SNPs that result in lower COMT are a BAD COMBINATION.
And this-
Catechol-O-Methyltransferase (COMT) is one of several enzymes that degrade dopamine, epinephrine, and norepinephrine.
So acording to this , genetics mutations a lot of stuff in body can go wrong
MTHFR A1298C - heterozygous
VDR bsm - homozygous
COMT V158M - heterozygous
COMT H62H - heterozygous
MTRR A66G - heterozygous
This couse a low vit D
We see that LH hormone can be disturbed and this could be explanation
of LOW T in big mayority of poisers.
Degrade dopamine, epinephrine, and norepinephrine feilure.
Wery senzitiwe, toxic, on mercury exposure (note in mans only).
All expleined here:
https://selfhacked.com/blog/worrier-warrior-explaining-rs4680comt-v158m-gene/
Wait so you have a MTHFR SNP mutation?
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Nas, i suspect that genetics factors are inwolwed in big here.
Catecholamines are like you supouse definitly inwolwed here.
I didnt tested, because unfortinutly , i was born where i am born , and because of
that , i cant do a big mayority of tests wich i wish to do.
Something similar to Iran in your case.
As you can see from genetics test of this member, what cascade of feilures
that can lead, it can lead streight to pois when you read deaper.
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Nas, i suspect that genetics factors are inwolwed in big here.
Catecholamines are like you supouse definitly inwolwed here.
I didnt tested, because unfortinutly , i was born where i am born , and because of
that , i cant do a big mayority of tests wich i wish to do.
Something similar to Iran in your case.
As you can see from genetics test of this member, what cascade of feilures
that can lead, it can lead streight to pois when you read deaper.
I'm from Iraq btw, but I'm still confused, who are these tests for? Is it for a nother POIS sufferer or just a guy who has MTHFR mutation?
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Yes Iraq... i posted link of curioscharacter post about his genetics test results.
It is on 4rth line in my post from up to the botom.
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Yes Iraq... i posted link of curioscharacter post about his genetics test results.
It is on 4rth line in my post from up to the botom.
Hmmmm, I guess this is potentially huge.
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Could abnormalities in catecholamine metabolism alter adrenoceptor densities? Could this lead to premature ejaculation?
-
This is the perfect exapmle that this member actualy cant see that this could
be (I think that it is) couse of his pois.
I think that here is key of pois in some of us, genetics test results of curisocaracter.
https://poiscenter.com/forums/index.php?topic=2728.msg24633#msg24633
So here we see, vitamin D problem(GENETIC MUTATION)
For this reason, having MTHFR SNPs that cause undermethylation and COMT SNPs that result in lower COMT are a BAD COMBINATION.
And this-
Catechol-O-Methyltransferase (COMT) is one of several enzymes that degrade dopamine, epinephrine, and norepinephrine.
So acording to this , genetics mutations a lot of stuff in body can go wrong
MTHFR A1298C - heterozygous
VDR bsm - homozygous
COMT V158M - heterozygous
COMT H62H - heterozygous
MTRR A66G - heterozygous
This couse a low vit D
We see that LH hormone can be disturbed and this could be explanation
of LOW T in big mayority of poisers.
Degrade dopamine, epinephrine, and norepinephrine feilure.
Wery senzitiwe, toxic, on mercury exposure (note in mans only).
All expleined here:
https://selfhacked.com/blog/worrier-warrior-explaining-rs4680comt-v158m-gene/
Wait I'm confused, does COMT SNP cause lower or higher amounts of catecholamines? From what I read, it should cause excess of these neurotransmitters which are quite the opposite of the usual cognitive symptoms we suffer from?
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They have taken a while to call me back. But finally I have an appointment for blood extraction to do the genetic test.
Next thursday (7th February) they hopefully will take my blood sample. And a month later (8th March), will know the result.
I'll tell you the result of this genetic test.
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Thank you, fernab!
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Bloodtest Vandemolen (I combined a few bloodtest in the last years because not all things were tested in 1 blood test)
Hemotology
ESR: 3. Reference range (RR)0-15
Hemaglobin: 9.8. RR: 8.5-11
Hematocrit: 0.40. RR: 0.40-0.50
Mean Corpuscular Volume: 84. RR: 80-100
Erythocytes: 4.89. RR: 4.50-5.50
Trombocytes: 6.0. RR: 6.0
Leucocytes: 5.6. RR: 4.0-10.0
Neutrophils: 2.95. RR: 2.0-7.0
Basophilic granulocytes: 0.05. RR: 0-0.20
Eosinophilic granuloctyes: 0.15. RR: 0.00-0.45
Lymphocytes: 2.01. RR: 0.50-4.50
Moncytes: 0.41. RR: 0-0.80.
Ferritin: 54. RR: 25-250
Amalyse 92. RR: 0-99
Clininal Chemie
Urea: 3.5 (in 2016). RR: 2.5-6.5
Creatinine: 85. RR: 64-104
eGFR (MDRD): higher than 60. RR: higher than 60
eGFR (CKD-EPI): higher than 90. RR: higher than 90
Natrium: 141. RR: 135-145
Calcium: 2.59. RR: 2.15-2.65
Magnesium: 0.95 (in 2016). RR: 0.70-1.00
Uric acid: 0.37. RR: 0.20-0.38
ASAT: 29. RR: 0-34
ALAT: 26. RR: 0-44
Alkaline Phosphoatase: 56. RR: 40-120
gammaGT: 35. RR: 0-54
Tryptase: 4.6. RR: 0-11.4
Triglycerides: 2.4 (in 2016). RR: 0-2.0
Glucose: 5 (in 2016). RR: 4-6
Vitamin B12: 525. RR: 130-700
Methylmalonic serum: 221. RR: less than 350
Homocysteine: 9. RR: 0-15
Folic acid: 29. RR: 6-39
Vitamin D (25-OH): 173. RR: higher than 50
Iron: 13. RR: 14-30
Transferrin: 2.3. RR: 2-4
Cholesterol: 7.21. RR: 2.50-6.50
LDL cholesterol: 3.6. RR: less than 2.5
HDL cholesterol: 1.0. RR: less than 1.0
Endocrinology
TSH: 8.1 RR: 0.55-4.8
Free T4: 17.5. RR: 10-26
Thyriod Peroxidase antibodies: 25. RR: less than 50
Cortisol: 0.19. RR: 0.03
Testosterone: 9.6 (in 2016). RR: 10-30
Free testosterone: 378 (in 2011). RR: 174-729
SHBG: 12 (in 2011). RR: 13-71
DHEA-S: 7.0. RR: 2.6-14
PTH: 1.6. RR: 1.6-6.8
PSA: 2.3 (in 2016). RR: 0-2.0
Immonology
C-reactive protein: 1. RR: 0-10
IgA: 1.22. RR: 0.70-4.00
iGe: 64 (in 2015). RR: 1-90
IgM: 0.26. RR: 0.40-2.30
IgG: 10.0. RR: 7.0-16.0
t-TransGlut IgA: less than 1 (in 2011). RR: 0-5
Prolactin: 0.29 (in 2011). RR: 0-0.32
Progestrone: 1.8 (in 2010). RR: 0.7-4.3
HCG + beta: less than 1 (in 2011). RR: 0-1
ANA-titer: 1.160. RR: less than 1.80
ENA-screening: neg. RR: neg
Ds-DNA as: less than 10. RR: 0-35
Did some new blood tests. Most important is that my ANA-titer is too high. I do not know what this means for POIS. But it is for sure that on immunology there is something wrong. Althought also healthy people can have too high ANA-titer.
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ANA-titer: 1.160. RR: less than 1.80
ENA-screening: neg. RR: neg
Ds-DNA as: less than 10. RR: 0-35
Did some new blood tests. Most important is that my ANA-titer is too high. I do not know what this means for POIS. But it is for sure that on immunology there is something wrong. Althought also healthy people can have too high ANA-titer.
Thanks for sharing your medical information. All of the autoimmune parameters that I can see are normal. The ANA-titer that you show is normal (1.16 < 1.80). Is there something that I missed? I did add your result to the pattern list.
--4 of us have normal autoimmune panel test (nanna1, quotz, Vandemolen, Muon).
-
ANA-titer: 1.160. RR: less than 1.80
ENA-screening: neg. RR: neg
Ds-DNA as: less than 10. RR: 0-35
Did some new blood tests. Most important is that my ANA-titer is too high. I do not know what this means for POIS. But it is for sure that on immunology there is something wrong. Althought also healthy people can have too high ANA-titer.
Thanks for sharing your medical information. All of the autoimmune parameters that I can see are normal. The ANA-titer that you show is normal (1.16 < 1.80). Is there something that I missed? I did add your result to the pattern list.
--4 of us have normal autoimmune panel test (nanna1, quotz, Iwillbeatthis, Vandemolen).
No my ANA-titer is too high. It should be less than 1.80. But mine is 1.160. Or better: 1:160 is higher than 1:80. An ANA-titer of 1:160 or higher is considered as a positive test result.
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Please tell me if my math is wrong.
(1:160 = 1/160 = 0.00625) < (1:80 = 1/80 = 0.0125) (normal)
or if we interpret the result as it is written:
1.16 < 1.80 (normal)
Both of these interpretations of the data show normal ANA-titer (autoimmunity), even though they mean different things. Am I missing something?
I took the following 7 autoimmune test: anti-nuclear antibody, anti-DNA antibody, anti-SSA antibody (https://en.wikipedia.org/wiki/Anti-SSA/Ro_autoantibodies), anti-SSB antibody, anti-Sm antibody and anti-RNP antibody and anti-SCL-70 antibody. All of these were negative/normal (see section 3. Autoimmunity blood test: (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039)).
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Please tell me if my math is wrong.
(1:160 = 1/160 = 0.00625) < (1:80 = 1/80 = 0.0125) (normal)
or if we interpret the result as it is written:
1.16 < 1.80 (normal)
Both of these interpretations of the data show normal ANA-titer (autoimmunity), even though they mean different things. Am I missing something?
For the ANA test, 1 part of the serum is diluted into 40 parts of diluent (called a “1:40” titre). This diluted sample is tested for the presence of ANA antibodies. If the test is positive, a new sample is made at half the strength (1:80) and tested for the presence of ANA. The test is repeated every time it is positive by diluting the sample to 1:160, 1:320, 1:640, 1:1280, and finally 1:2560.
The lowest dilution is 1:2560. When antibodies are present at the lowest dilution, this indicates that there is a very high number of antibodies in the blood. In other words, the body has mounted a substantial immune response against nuclear proteins.
https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/
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https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/
I initially did not understand that 1.80 in your test really means 1:80. Thanks Vandemolen for the clarification. But now I am even more confused because the site you quote states the following:
"If the ANA titre is low (e.g. 1:40, 1:80 or even 1:160), there is often no autoimmune disease"
https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/
So is the site you quote correct, that you probably do not have an autoimmune disease?
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https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/
I initially did not understand that 1.80 in your test really means 1:80. Thanks Vandemolen for the clarification. But now I am even more confused because the site you quote states the following:
"If the ANA titre is low (e.g. 1:40, 1:80 or even 1:160), there is often no autoimmune disease"
https://rheuminfo.com/common-tests/anti-nuclear-antibody-ana-test/
So is the site you quote correct, that you probably do not have an autoimmune disease?
The lab where I did the test says 1:80 is ok. But 1:160 is not. They marked it with a H for too high. When you google some say even 1:80 is not ok. They consider 1:40 to be an ok result. But 1:160 is not extremely high. So I am curious what my POIS doctor will say about it.
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Hi Nanna1 , i am wery glad to see that you did heard my words and start making
comon patern tread "software", i did giwe all from my self to collect traces of usefull data
all ower the...
My sugestion is that you make separate tread with this only.(and update it)
I think that this is wery imoprtant, evan now we can se that some poisers hawe allmoust
the same lab test resullts.
I inwate here all pois mebers to collect all traces of usefull data from poisers,
i mean when you find some on resarching, plese post them on medicall test results tread.
(or your own personall)
I am convinced that we will find in this whey in future what trigering illnes in us,
would this be one thing to make us ill , or 4-5 things togedher and because of that
imunity is triggered, wi will knew it in future.
Thanks Nana.
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So I am curious what my POIS doctor will say about it.
Ask him for an IgG4 test. A Normal IgG level tells us nothing about IgG4 since IgG4 covers only a few percentage of the total sum of IgG subclasses. The reason for testing this is that people who have done immunization therapy might produce IgG4 specific antibodies which raises the total level of IgG4.
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Thanks Hopeoneday for posting a lot of data from other POISers. A scientist is only as good as his/her data set. We will have to think about how to organize the patterns.
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Nanna posted a case report here (https://poiscenter.com/forums/index.php?topic=2684.msg27145#msg27145). The patient seems to have a fatty liver. It's unclear to me whether this patient uses alcohol. Changes in the microbiome and choline deficiency play a role in fatty livers.
''Links between dysbiosis of the gut microbiota and liver diseases, in particular NAFLD, have been documented. Patients with NASH can have increased levels of blood ethanol. Patients with a more aggressive NAFLD were found to have a choline depletion linked to an increased choline metabolism.''
https://en.wikipedia.org/wiki/Non-alcoholic_fatty_liver_disease
https://en.wikipedia.org/wiki/Fatty_liver_disease
Many causes are possible and many of these are being discussed on this forum.
Association Between Composition of the Human Gastrointestinal Microbiome and Development of Fatty Liver With Choline Deficiency (https://www.sciencedirect.com/science/article/pii/S0016508510017397)
There are more references on the wiki page.
What is noteworthy in this POIS case is life-long atopy: ''What should be considered in this patient is his life-long atopy...''
Family members of mine are sensitive to things like food, pollen, latex etc.
''Atopy is a predisposition toward developing certain allergic hypersensitivity'' and ''Atopy may appear associated with an undiagnosed non-celiac gluten sensitivity''
https://en.wikipedia.org/wiki/Atopy
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And again, according to Dr. Theoharis Theoharides, non-celiac gluten enteropathy, as well as allergies, and atopy may be linked to Mast Cells....
This text below is from Theoharis Theoharides:
MCs are best known for their role
in immediate IgE-mediated, allergic
responses in anaphylaxis, food allergy,
venom allergy, and asthma. Recent
reports have also implicated MCs in
nonallergic disorders, including head-
ache syndromes, irritable bowel syn-
drome, non-celiac gluten enteropathy,
osteoporosis, autoimmune syndromes,
neuropsychiatric disorders, and intersti-
tial cystitis [Theoharides et al., 2015].
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Indeed Fernab, Dr.Theoharides considers atopy a subset of mast cell activation disorders where MCAD is a much broader term. And people should distinguish allergic mast cell activation from non-allergic mast cell activation.
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Yes Muon, you are right.
In my case as poiser, I have been diagnosed to have non-celiac gluten enteropathy. I have been also diagnosed of having dermatography. A very striking indication to take into account for the diagnosis of some mast cell desorder.
But despite everything I am fully aware that the diagnosis is necessary to confirm POIS may have any relationship with any of the various mast cell disorders. Will try to follow this posibility and update you all.
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In my case as poiser, I have been diagnosed to have non-celiac gluten enteropathy.
How did they establish that diagnosis?
-
1.- Discarded celiac disease by duodenal biopsy in 2015 and 2018.
2.- antibodies related with celiac disease:
anti tTG + anti DPG (IgA+IgG):
? september 2015: 39.1 (positive)
? march 2016: 128 (positive)
? march 2018: 234 (positive)
? october 2018: >300 (above 300, positive)
3.- anti DPG IgA 12 U/ml (positive in march 2018, previously negative).
4.- Genetic analysis of celiac disease:
Antigen histocompatibility HLA DQ2 negative:
DQ2 Negative
Not detected alleles conferring risk of celiac disease
HLA-DQA1*0501: Negative
HLA-DQA1*0201: Negative
HLA-DQB1*0201: Negative
HLA-DQB1*0202: Negative
Antigen histocompatibility HLA DQ8 negative:
DQ8 Negative
Not detected alleles conferring risk of celiac disease
HLA-DQA1*03. : Negative
HLA-DQB1*0302: Negative
In summary, genetically I cannot be celiac. Confirmed studying biopsies in 2015 and recently in 2018. (They also filmed all the internal gut with a cam (endoscopic capsule). And after studying biopsies they concluded everything was normal. intestinal villi are completely normal. Without any type of microscopic atrophy according to study of pathological anatomy. Duodenal mucosa without morphological alterations. They did an immunohistochemical study of the biopsy for intraepithelial lymphocyte count. With a result of 15 lymphocytes x 100 enterocytes (range within normality).
After 3 years of testings with no clear celiac results they asked me to do a diet without gluten. About 15 days after starting the gluten-free diet. The diarrheas that I was having disappeared.
An immunologist after showing him all these results told me. You are not celiac, but you have developed a sensitivity to gluten. Recently a very experienced rehumatologist with more than 30 years of experience in gluten related pathologies told me exatly the same: I am not celiac but gluten sensitive according to those results.
-
As scheduled, last thursday (7th February) they took a blood sample to do the genetic test.
Hopefully next 8th march will have the result. Will keep you upated.
-
Had anyone done an MRI?
-
Yes Nas, I did many. Brain and the whole spine. The only remarkable thing they found were some hemangiomas close to some vertebrae bones.
I also did a pelvic MRI some days after I rode on sled. Since after that I began to manifest the trigger to pressure (at this time only on the perineal and testicles area). And therefore I started not being able to sit down. This MRI, showed some signs of post prostatic inflammation at some points.
By the way Nas, when I was searching videos on Youtube about MCAS patients having also a pressure trigger when sitting or laying down, I found a girl with MCAS a girl whose trigger was smoking. Something happens to you when you smoke, too?
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Yes Nas, I did many. Brain and the whole spine. The only remarkable thing they found were some hemangiomas close to some vertebrae bones.
I also did a pelvic MRI some days after I rode on sled. Since after that I began to manifest the trigger to pressure (at this time only on the perineal and testicles area). And therefore I started not being able to sit down. This MRI, showed some signs of post prostatic inflammation at some points.
By the way Nas, when I was searching videos on Youtube about MCAS patients having also a pressure trigger when sitting or laying down, I found a girl with MCAS a girl whose trigger was smoking. Something happens to you when you smoke, too?
So the brain MRI didn't show any enlargement, shrinking or swelling? This even more leads me to believe that POIS cognitive symptoms are not brain inflammation.
And yes, smoking cigarettes makes me POIS, but at this point I don't think what I have is MCAS or anything related to Mast Cells, since I've tried so many Mast Cells treatments but without any success.
-
Yes Nas, I did many. Brain and the whole spine. The only remarkable thing they found were some hemangiomas close to some vertebrae bones.
I also did a pelvic MRI some days after I rode on sled. Since after that I began to manifest the trigger to pressure (at this time only on the perineal and testicles area). And therefore I started not being able to sit down. This MRI, showed some signs of post prostatic inflammation at some points.
By the way Nas, when I was searching videos on Youtube about MCAS patients having also a pressure trigger when sitting or laying down, I found a girl with MCAS a girl whose trigger was smoking. Something happens to you when you smoke, too?
I also had an MRI for the brains and the pelvic area, also the kidney’s. Have you ever had a dry needle treatment for your pelvic area? A therapist felt that the trigger point above my bladder (the pubic hair area) was very painfull. I want to go to a dry needle fysiotherapist to treat those trigger points.
-
I had a standard brain mri that was clear. My only question is if tracer dye is used can that make a difference in result.
-
I've had a brain MRI which was fine as well.
-
Me too
-
So this rules out encephalitis. What else causes brain fog then?
-
I went to an optometrist today and it turns out I have inflammation to the Meibomian glands, this causes dry eyes.
https://en.wikipedia.org/wiki/Meibomian_gland
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Hi Muon, I have exactly the same since I began to have POIS... I think the Medical term used for this condition is blepharitis....
-
Before POIS I was not sensible to gluten.
Some antibodies against gluten were synthetised by my immunological system.
I am in abstinence since 7 months. And I noticed something. When I finish peeing I sometimes notice that I have some seminal fluid diluted in the pee. There was an occasion when the exit of a dense thread was very clear, as is usually the case with semen. Besides something sticky. But it does not affect me at all. This releases without orgasm do not activate my POIS. Does that means that orgasm adds something at the level of the nervous system? It is arousal necessary to activate POIS? I think the nervous system intervenes in some way in the activation of POIS.
This remembers me when I read a member's post in this forum explaining that he noticed that his POIS was not so strong if he released with a low level of arousal.
To resume: inmune system, nervous system and maybe neurotransmiters, hormones and some other chemical messengers could play a role on POIS. Very similar to the title of the NORD research program. Hope researchers will contribute a bit more to know how this horrible disease works.
-
I am in abstinence since 4 months. I do not have NE. But sometimes when I am in bed an aroused the next morning I can see there is a little bit of seminal fluid on boxers. Most of times in this situation I get mild POIS symptoms. But when I masturbate without ejaculation my POIS is worse then when I ejaculate. The amount of precum is much bigger in that case. Maybe that is the reason why I get POIS-symptoms.
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Nervous system and inmune system are related.
I found this information:
Precisely, the authors of an article published in the Journal of Experimental Medicine1, explain how nerve signals transmitted through the vagus nerve could be part of an "inflammatory reflex". This means that there is a neural circuit that is capable of modulating immune responses. These inflammatory reflexes would be responsible for maintaining immunological homeostasis, that is, maintaining the balance of the immune response, since an excess or lack of activity can cause diseases
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More info on that sense:
We have known for some time that there is a connection between our nervous system and our immune system. Since the discovery of the anti-inflammatory action of some hormones, there have been major advances in the field of psychoneuroimmunology. Among them, some studies have revealed the presence of nerve endings near immune cells, such as T or B lymphocytes, in organs of the immune system, such as the thymus, lymph nodes or spleen.
It is important to know that the T lymphocytes of a specific individual can only detect an antigen if it is presented by an antigen-presenting cell and if it is associated with the major histocompatibility complex (MHC) I or II. Therefore, in the thymus, a process of selection of lymphocytes capable of exercising said function takes place. Only T lymphocytes that have receptors that allow interaction with said molecules (positive selection) will survive. During this process the T lymphocytes are bound to the CMH I molecule or to the CMH II, and depending on which molecule they interact with, they will differentiate and give rise to two different lymphocyte populations, CD8 + and CD4 + respectively.
In a second step, the T lymphocytes whose receptors show a very high affinity for the self antigens (autoantigens) presented by the CMH molecules will be eliminated, since otherwise autoimmune diseases could occur. In this way it is ensured that the T lymphocytes do not attack their own antigens (self-tolerance).
https://en.m.wikipedia.org/wiki/Thymus
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Maybe this second step is failing somehow... Causing autoinmune diseases. I also think hormones (endocrine system) is at the same time linked to nervous and inmune system.
We tend to think about them as separated systems. Because medicine is structured like this. To study each separately. But in a human body every systems works together as a whole.
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Vandemolen,
I also have POIS symptoms with only precum presence. No need orgasm. This leads me to think arousal is something connected to POIS trigger. Precum is a liquid that is getting out from bulbourethral glands or cowper glands. This glands are just below the prostate. And suppose the nervous system as a consecuence of arousal is the responsible of 'opening' (or activating those glands).
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So this rules out encephalitis. What else causes brain fog then?
Hi Nas, I agree, POIS is not associated with autoimmune encephalitis. My three MRIs were all normal, but my angiograms are not normal. Several POISers have immune deficiencies which seems to contradict the autoimmunity theory. Also the autoimmunity test from several POISers are negative.
Autoimmunity test
--4 of us have normal autoimmune panel test (nanna1 (https://poiscenter.com/forums/index.php?topic=2683.msg24039#msg24039), quotz, Vandemolen, muon).
--1 of us show possible autoimmunity (Iwillbeatthis), correlated with positive EBV (HHV-4) infection
--1 of us show normal/negative autoimmune antibody test for onconeural antibodies, insulin, peripheral NMDA-receptor, adrenal-cortex, potassium channel, glutamic acid decarboxylase (Muon's brother (https://poiscenter.com/forums/index.php?topic=2545.msg22020#msg22020))
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It is important to know that the T lymphocytes of a specific individual can only detect an antigen if it is presented by an antigen-presenting cell and if it is associated with the major histocompatibility complex (MHC) I or II.
Hi fernab, have you looked into natural killer (NK) cells?
"The role NK cells play is analogous to that of cytotoxic T cells in the vertebrate adaptive immune response. NK cells provide rapid responses to virus-infected cells, acting at around 3 days after infection, and respond to tumor formation. Typically, immune cells detect major histocompatibility complex (MHC) presented on infected cell surfaces, triggering cytokine release, causing lysis or apoptosis. NK cells are unique, however, as they have the ability to recognize stressed cells in the absence of antibodies and MHC, allowing for a much faster immune reaction." (https://en.wikipedia.org/wiki/Natural_killer_cell)
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Hi Muon, I have exactly the same since I began to have POIS... I think the Medical term used for this condition is blepharitis....
Yes and it's also responsible for a burning sensation on the surface of my eyes. I suspect there is also inflammation of the sebaceous glands of the skin, since I get some sort of acne and a dry or fatty skin in POIS. This diagnosis was more of a coincidence since I visited the optometrist for floaters and eye pain/pressure. Eye pressure is normal, I'm being told that the pain inside the eyes probably is related to blood vessels or something else but not fundamentally related to the eye itself.
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Hi fernab, have you looked into natural killer (NK) cells?
Hi Nanna1,
I just read on Wikipedia about the Natural Killer Cells. and indeed I see that it is very related to the Post that I have writen. In fact, it is also commented in Wikipedia that immature T cells migrate to the thymus gland to end maturation.
Anyway. Although nothing can be assured until proven, I have always had a good state of health. except for stationary allergy to pollens.
It is the only thing that has affected me every spring since I was very small. From 5 or 6 years old.
POIS arrived to my life around 40 years old. Before POIS, only pollen allergy was my only Illness (something with which I could live without any problem).
When POIS began. I also began to have digestive problems I never had before.
Now I have been diagnosed to be sensible to gluten. But not celiac. Duodenal biopsies (more than one). Genetic analysis DQ2-DQ8. Discard that I am a pure celiac. However, my immune system has developed some, only some antibodies against gluten.
1.- antibodies related with celiac disease:
anti tTG + anti DPG (IgA+IgG):
- september 2015: 39.1 (positive)
- march 2016: 128 (positive)
- march 2018: 234 (positive)
- january 2019: 255 (positive)
2.- anti DPG IgA:
- march 2018 12 U/ml (positive for the first time, previously negative).
- january 2019 108 U/ml (positive).
All other celiac antibodies have been always negative.
The Dr of digestive system that keeps track of these antibodies
Told me last 14 February that I am sensible to gluten. She told me that this is an autoinmune condition.
An inmunologist I visited during several months told me the same. And an expert with more than 30 years of experience in diseases related to gluten told me also I am sensible to gluten.
And I have read in this forum that there are several members who also have developed problems with gluten since they have POIS. This is why I link POIS with autoinmune condition. When I was visiting my inmunologist. He searched me a lot of other posibles autoinmune Illness or antibodies. He only found that I also have developed some anti insuline antibodies. But nevertheless this anti insuline antibodies he told me I am not diabetic.
This inmunologist also did me a test to get a detailed study of my lymphocyte population including all the Natural Killers. Can give you more detail of this test if you want....
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Hi Muon, I have exactly the same since I began to have POIS... I think the Medical term used for this condition is blepharitis....
Yes and it's also responsible for a burning sensation on the surface of my eyes. I suspect there is also inflammation of the sebaceous glands of the skin, since I get some sort of acne and a dry or fatty skin in POIS. This diagnosis was more of a coincidence since I visited the optometrist for floaters and eye pain/pressure. Eye pressure is normal, I'm being told that the pain inside the eyes probably is related to blood vessels or something else but not fundamentally related to the eye itself.
Hi Muon, I have had exactly the same problems you are describing on my eyes. Burning sensation on eyes suface. Redness. feeling of grit in the eyes. Internal eyes pressure feeling.
And I have been said many many times that I have sebaceous problems on my skin. in several places of the head. right eyebrow and eyebrow. scalp on the left side. skin flaking on ears. outside and inside. curiously all this on my skin only happens to me since I started having POIS. before, none of that ever happened to me. and it is more. when the symptoms of POIS are stronger. all these cutaneous manifestations also increase. I have tried many times to explain to doctors (even dermatologists). but we already know that the current capacity of doctors to associate certain things with POIS leaves much to be desired...
So it always been left in sebaceous and other problems without any possible connection to POIS. I suppose this is mainly due to the immense ignorance about this odious disease from the world of medicine in general.
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Anyway. Although nothing can be assured until proven, I have always had a good state of health. except for stationary allergy to pollens.
It is the only thing that has affected me every spring since I was very small. From 5 or 6 years old.
POIS arrived to my life around 40 years old. Before POIS, only pollen allergy was my only Illness (something with which I could live without any problem).
It sounds like atopy developing into POIS or POIS being part of an atopic condition. Many others had allergies or sensitivities when they were young before pois started to happen.
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Yes Muon. POIS is somehow influencing on my inmune system. At least in my case. And I think also in many others. although so it seems not to all poisers.
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I think I'm fucked for the rest of my life. Scientific progress is too slow. I'm 33 years old now, maybe we will have a cure when I hit 50 or 60 and that's optimistic. POIS has been discovered around 2001 and there hasn't been found a single biomarker yet (there hasn't been much research done though).
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I do not want to give you false hopes. since it could happen as you are saying. but I think you have to be prepared for the worst and think about the best.
I mean: one thing is the cure. And other very different is to be able to find something. That reduces as much as possible pois symptoms. Some poisers had reached it. It is not my case for the moment... Don't give up Muon.... Lets think we will be able to find something before the cure finally arrives.... My situation is also very unstable right now.
My work is at Risk to be loosed. As well as my relathionship.... I feel my life hangs on a thread.....
But I have no other chance better than fight this Illness while I can... And thinking I am not alone.... it makes it a bit more bearable....
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I think I'm fucked for the rest of my life. Scientific progress is too slow. I'm 33 years old now, maybe we will have a cure when I hit 50 or 60 and that's optimistic. POIS has been discovered around 2001 and there hasn't been found a single biomarker yet (there hasn't been much research done though).
I agree. But even if so we shouldn't stop our independent investigation, we're fucked anyways so we might as well try our luck and maybe we'll hit the lottery with an expected finding or cure.
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I wonder if someone treated his POIS by reducing prolactin levels?
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No in my case. Normal levels of prolactin for men: 2-18 ng/mL (this limits are found on Wikipedia). On my test the normal range is 2.6-13.2 for men. According to this later my prolactine level is just a bit HIGH.
High levels of prolactin in men can cause impotence. And this hormone may afect the functions of the prostate, seminal vesicles and testicles. And is also responsable of the drowsiness after orgasm in men.
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When my POIS began to be stronger, my lgE reached values of up to almost 700!
But since I am in abstinence. Not sure if this is the reason. My last value for lgE, came under the upper limit.
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I think I never tested my prolactin level. But for progesterone and testosterone, yes... Will search for them and post them on the results thread...I changed this to this thread sorry.
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I recently posted my hormones test results. Prolactine included. All in normal values except for progesterone, that was LOW. And maybe just a little high prolactine level. 13.7 ng/ml is above 13.2 marked as top on my test. But in other sources even 18 is accepted as normal. This makes me doubt.
Could be a LOW level of progesterone be linked to POIS?? And just a little high prolactine level?
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Hi fernab, have you looked into natural killer (NK) cells?
Hi Nanna1,
....This inmunologist also did me a test to get a detailed study of my lymphocyte population including all the Natural Killers. Can give you more detail of this test if you want....
Hi fernab,
Yes, I would be very grateful if you were willing to share your lymphocyte population info! No pressure though since medical test are personal information even when hiding the identity. Also, you may be interested in this:
Progesterone deficiency, "Benign coital headache relieved by partner's pregnancies with implications for future treatment (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028282/)" (Selwyn Dexter, 2009)
Thanks fernab! :)
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No in my case. Normal levels of prolactin for men: 2-18 ng/mL (this limits are found on Wikipedia). On my test the normal range is 2.6-13.2 for men. According to this later my prolactine level is just a bit HIGH.
High levels of prolactin in men can cause impotence. And this hormone may afect the functions of the prostate, seminal vesicles and testicles. And is also responsable of the drowsiness after orgasm in men.
Fernab, I wonder if lowering prolactin would be any help at all in POIS? High prolactin is also associated with low dopamine.
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I recently posted my hormones test results. Prolactine included. All in normal values except for progesterone, that was LOW. And maybe just a little high prolactine level. 13.7 ng/ml is above 13.2 marked as top on my test. But in other sources even 18 is accepted as normal. This makes me doubt.
Could be a LOW level of progesterone be linked to POIS?? And just a little high prolactine level?
You should get that progesterone on normal levels and see if that helps you at all.
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How many poisers have been tested for 17-alpha-OH-progesterone?
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Hi Muon,
My hydroxyprogesterone 17-alpha was:
1.49 ng/mL (Normal range: 0.63 - 2.15)
what is this particular hormone? Why do you ask about it??
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Hi fernab,
Yes, I would be very grateful if you were willing to share your lymphocyte population info! No pressure though since medical test are personal information even when hiding the identity. Also, you may be interested in this:
Progesterone deficiency, "Benign coital headache relieved by partner's pregnancies with implications for future treatment (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028282/)" (Selwyn Dexter, 2009)
Thanks fernab! :)
Hi nanna1,
Thank you for your information and for sharing this link. I will keep it in mind.
I already have posted my Natural Killer test results in the following link (post #53 of resulta thread).
https://poiscenter.com/forums/index.php?topic=2684.45
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Hi all,
I have already been given the result of the genetic analysis last March 8 (For MCAS Diagnosis):
The result was negative. The hematologist who gave me the result, explained me that this means that I don't have a Conventional Mastocytosis. But he told me that it could be an MCAS.
So immediately after, I went to see the doctor who is taking the my MCAS case.
He has asked me to do a 24-hour urine and blood tests to get the tryptase level and other biomarkers.
Will give them the urine and will extract blood sample next march 28th.
Will continue updating...
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Hi all,
I have already been given the result of the genetic analysis last March 8 (For MCAS Diagnosis):
The result was negative. The hematologist who gave me the result, explained me that this means that I don't have a Conventional Mastocytosis. But he told me that it could be an MCAS.
So immediately after, I went to see the doctor who is taking the my MCAS case.
He has asked me to do a 24-hour urine and blood tests to get the tryptase level and other biomarkers.
Will give them the urine and will extract blood sample next march 28th.
Will continue updating...
Nice
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I agree with CP2 :)
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I already have posted my Natural Killer test results in the following link (post #53 of resulta thread).
https://poiscenter.com/forums/index.php?topic=2684.45
Thanks fernab!
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Hi Muon,
My hydroxyprogesterone 17-alpha was:
1.49 ng/mL (Normal range: 0.63 - 2.15)
what is this particular hormone? Why do you ask about it??
It metabolizes into cortisol. Elevated levels could mean high cortisol levels.
He has asked me to do a 24-hour urine and blood tests to get the tryptase level and other biomarkers.
Is 11-b-PGF2a included?
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Hi Muon,
The real specialty of the Dr who is taking care of my possible case of MCAS is pediatric allergologist.
This Dr is a good colleague of another Dr who was a very good expert a few years ago on all the Mastocitosis desorders. In fact, there was a time when they were working together and that is why this pediatric allergologist was trained in this type of Disorders.
I reached to talk by phone with the Dr who was a good expert on these desorders (now he's retired since a few years ago). And he recommended me to visit his colleague for now (the pediatric allergologist).
This experienced Dr with whom I spoke by phone worked closely and collaboratively with Dr. Mariana Castells of Harvard Medical School.
This pediatric allergologist has the ability to refer me to another hospital not too far away in which they do devote themselves as part of their work to mast cell disorders. In this other hospital they are real experts on Mast Cells Disorders.
So, for now I must follow his instructions. I think he wants to try everything he can. Before redirecting me directly to the other hospital.
When the time comes I will ask him to refer me to the other hospital.
I think that in the hospital where I am going for now (to visit this pediatric allergologist), they do not have the proper techniques to detect the appropriate biomarkers for an MCAS. For instance, N-metyl-Histamine. Or the one you are asking me (11-b-PGF2a). Detected in a 24h urine test.
For the moment he is trying to find any relevant data with my levels of triptase at different moments (in blood). And other biomarkers such as catecholamines, metanephrines and 5hiaa on 24h urine tests.
Will continue updating...
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24h urine catecholamines and 5HIAA are interesting parameters as well. If all of them are negative he probably won't refer you to the mast cell specialised hospital but we will see. Have you told him about POIS yet? If not will you mention it eventually? Thanks for the updates.
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Yes you are right Muon.
Maybe It depends on the results he will refer me or not.
At first I don't wanted to talk him about POIS. Just to let him focus on MCAS. He read a report of my GP comparing POIS to MCAS. But he obviously did not showed to know anything about POIS. Since he thought the report was trying to compare MCAS with POTS instead of POIS.
If It finally turns out that he don't want to refer me to the other hospital. I will tell him about POIS and the possible relathionship with MCAS as a final resource....
We will see how this evolves....
Will continue updating.
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I think I made the mistake by telling my immunologist about POIS the first moment I stepped into his office. He just swept POIS from the table. Some doctors show interest but the majority does not. It's difficult to tell whether the doc in question is open minded about POIS.
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I agree. Something I learned after going to many Drs is that they don't like to feel you know anything better than them. In general they like to have things under their control. So, I decided some time ago to be very cautious about what to tell and what not. To filter the information appropriately. And let them feel everything is under their control. And to take advantage of any moment he is in doubt or when he is arriving to the point where he about to say 'I don't know what else to do with you'.... I try to let him know all that I know until now. At this point, as you say Muon. It Will depend on how much open minded he is. Or if he is near or not to the research world.... I prefer to let him fisrt to do what he wants... Drs as Tierney Lorenz or Nicole Prause would be perfect candidates to visit as they are un direct contact with the research world. And thus, I think totally open minded to any posibility.... Is not easy at all. But we need to think positively and fight POIS till the end....
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For the moment he is trying to find any relevant data with my levels of triptase at different moments (in blood). And other biomarkers such as catecholamines, metanephrines and 5hiaa on 24h urine tests.
Will be very interesting to see these bio-markers. I think your Dr is on the right track. I do agree with your methodology of filtering the information as much as you can. I've recently come to the realization that neither MCAS nor catecholamines depletion is the cause of my POIS because of the failure of treatment to these issues. But we'll see what your tests will show. Hopefully a bio-marker would catch the interest of your Dr. Good luck until then Fernab!
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I think I made the mistake by telling my immunologist about POIS the first moment I stepped into his office. He just swept POIS from the table. Some doctors show interest but the majority does not. It's difficult to tell whether the doc in question is open minded about POIS.
Did you tell him that you have POIS or that you were a subject of Waldinger's research on POIS? Because I think the latter would be less offensive-ish than the former.
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I think I made the mistake by telling my immunologist about POIS the first moment I stepped into his office. He just swept POIS from the table. Some doctors show interest but the majority does not. It's difficult to tell whether the doc in question is open minded about POIS.
I’ve gotten to the point in my ripe old age where I just don’t trust *any* doctor to be openminded about POIS. I just keep my mouth shut. Sad, isn’t it? But if anyone else is brave enough, my hat’s off to ya!
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Bad news: more than 10 types of my anti-PNECS is too low. PNEC is pulmonary neuroendocrine cell. I have not talked with my doctor yet. I have an appointment for next month but I saw my results at the website of the hospital. PNEC is associated with tumors. But is that when PNEC is too high or too low? When I googled I also saw that someone with CFS has low PNEC. After a vaccin of Haemophilus influenzae type B his PNEC has rised.
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Hi Vandemolen,
Try to not panic. Talk first with your Doctors. Maybe more than one of us have also the same problem.
I am increasingly convinced that the nervous system is closely related to POIS. whether they are neurotransmitters. neurohormones, hormones .... receptors .... mast cells are cells of the neuroimmune system .... that is, common to the immune and nervous system ...
Try to not panic.... I know It is easy to say. But think about the posibility it is not allways linked to any tumor....
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Thanks Fernab. Yes you are right. It is just that I am sick now for 5 months, so I am looking for a cause. But it was not smart to check the blood results online before talking to the doctor.
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I can't find any well written info about anti-PNECS on the internet. What are these? Are these antibodies against Pulmonary neuroendocrine cells? It's funny we had a discussion via PM about sensory nerves fibres and receptors in POIS, these cells are actually linked to that. These cells are a bridge between the Nervous system and endocrine system if I'm not mistaken. They also release neuropeptides. Interesting stuff. The wide array of symptoms involved seem to make more sense now if you take these cells into account. Perhaps I should make an appointment with your immunologist as well to check if I got the same issue. We need to check whether this is related to POIS by testing this in more patients.
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Bad news: more than 10 types of my anti-PNECS is too low. PNEC is pulmonary neuroendocrine cell. I have not talked with my doctor yet. I have an appointment for next month but I saw my results at the website of the hospital. PNEC is associated with tumors. But is that when PNEC is too high or too low? When I googled I also saw that someone with CFS has low PNEC. After a vaccin of Haemophilus influenzae type B his PNEC has rised.
The link to a guy who had low anti-PNECS. After 2 vaccins his anti-PNECS rised. He did the test because he has CFS.
In Dutch:
https://www.me-gids.net/index.php?name=PNphpBB2&file=viewtopic&t=8324&postdays=0&postorder=asc&highlight=Pnecs&start=45
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The person from the link you gave us went to the same hospital as you did.
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Yes if you scroll back at page 3 of that topic you can see that he says that he has a lot of infections. Maybe he has POIS, but he does not know it?
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Could be that. I will talk about those anti-PNECs to the neurologist I am visiting... Just to check about these values on my own as well.
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Yes if you scroll back at page 3 of that topic you can see that he says that he has a lot of infections. Maybe he has POIS, but he does not know it?
Or this is related to an infection and you are the only one having this issue. To be sure of this we need to test it in more patients. How do I get these parameters tested? Could you ask your immunologist if he wants to see another POIS patients that want to get tested for this parameter to rule out a link with POIS?
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Last summer I had this for two weeks. It stopped when I took 3 days of antibiotics. Before I got sick I took antibiotics for 3 weeks. I felt cold even it was summer. So I thought about UTI. After taking antibiotics for 3 days I read about candida. So I stopped. After a week I stopped it went away. The current episode of 5 months was after sexual activity. First the POIS came in. Some symptoms never went away.
I want to wait what the diagnose is first. If there is a small chance that it is POIS related I will ask him.
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Vandemolen,
What are your symptoms?
I am sick since 12 months ago and in my case is POIS related...
Can't seat, can't stand up for too much time, and having lot of dificulties to lay down on bed. Can't flex the lumbar vertebrae. Pain on knees and back at the level of several vertebrae when standing up for some time.... Really difficult situation also. My work is at risk to be loosed. Hope to find any solution as soon as posible. Need it.
Wish you as much luck as posible!
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By the way.... When I began with POIS in a strong manner. I had also cold in summer even with shaking chills. But it has not happened to me for a long time. I am in abstinence since 7 months ago. But any arousal gets me in a worse situation. For sleeping, laying down on bed and for standing up.
In my case I know It is about POIS.
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By the way.... When I began with POIS in a strong manner. I had also cold in summer even with shaking chills. But it has not happened to me for a long time. I am in abstinence since 7 months ago. But any arousal gets me in a worse situation. For sleeping, laying down on bed and for standing up.
In my case I know It is about POIS.
I think we should make a complete MRI to the genitourinary tract including different sex glands to look for signs of inflammation. This should be done after sufficient levels of arousal and onset of symptoms. One of these glands should be inflammaed, if the auto-immune theory holds true.
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Vandemolen,
What are your symptoms?
I am sick since 12 months ago and in my case is POIS related...
Can't seat, can't stand up for too much time, and having lot of dificulties to lay down on bed. Can't flex the lumbar vertebrae. Pain on knees and back at the level of several vertebrae when standing up for some time.... Really difficult situation also. My work is at risk to be loosed. Hope to find any solution as soon as posible. Need it.
Wish you as much luck as posible!
How do you know your symptoms are POIS related when you are in abstince for 7 months? I am in abstince since 5 months. I got sick after sexual activity and never get better. I get hot flushes and chills. Because of the flushes I have an itchy skin, red dots and acne.
The hot flushes appear when:
1. I am sitting in the bench for 10 minutes. For example when watching tv. When the flush comes and I stand up or lean forward with my back not on the bench or a pillow the flush goes away. But after the flush I get chills.
2. When I am driving for more than 20 minutes. Even when it is not hot outside.
3. When I sleep. Normally I sleep on my side or belly. But maybe when in sleep I am laying on my back for a period. I have sleeping problems. Hard to fall asleep. And I wake up after 4 or 5 hours. After that I can not fall asleep again.
4. After taking a hot shower. When I take a lukewarm shower I get less symptoms.
5. After sports. Or even when I walk for 30 minutes.
Thanks! I whish you all the best too.
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Neuropeptides can cause flushing and itching.
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Neuropeptides can cause flushing and itching.
Source?
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I know It is POIS related because 7 months ago with my last ejaculation, all the symptoms I had, got worse during the following days. In addition to the usual bad symptoms I have since POIS began:
1.- Strong fatigue
2.- Strong palpitations
3.- Runny nose.
4.- Red eyes.
5.- itchy skin.
6.- lung pain when breathing, as if the air entering were blades.
7.- Muscles pain.
8.- Abdominal discomfort
9.- Inability to sleep well, I always woke up after a few hours. variable times. 3-4 hours in the worst case not to arrive at 2 hours.
10.- Now, some weeks ago. I only got a little excited, and just because of that, I got some precum. and as soon as it came out I noticed that it burned and hurted everything it touched. urethra and skin of the glans mucosa.
Nas, some months after I began with problems just by sitting (pressure on testicles and perineal area) I did an MRI. And results noticed some post prostatitis (some areas around prostate showed some inflammation....
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Nas, some months after I began with problems just by sitting (pressure on testicles and perineal area) I did an MRI. And results noticed some post prostatitis (some areas around prostate showed some inflammation....
What about the other glands? Were they also normal? Also if you can find the data of this test can you please post them here?
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Yes, I had posted it on the other thread (for results post #20 here: https://poiscenter.com/forums/index.php?topic=2684.15 )
I copy it here below. Other glands were normal. But this situation was produced just because of pressure when sitting down. Not after an ejaculation. The problem for me right now is that I cannot ejaculate again while I continue being so sick. Because if I'm already like that I do not want to think about the consequences of getting even worse ...
Here the result of pelvic MRI (pelvic area, testicles were not included):
Pelvic Magnetic Resonance Imaging (March 2018):
prostate of conserved size showing some slight hyperintense areas in the peripheral region predominantly in third that could be suggestive of slight post-prostatitis changes. There are no suspicious lesions of malignancy in the prostate. Seminal vesicle without alterations. Perineal region without significant alterations.
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Fernab, that does not look like my symptoms. I only have sleeping problems too and I get tired. Maybe because of the lack of sleep. Well, I also have muscle pain (maybe because of bad sleep) and itchy skin.
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Vandemolen, remember we poisers don't have always exactly the same symptoms....
Have you tried any 5-ht receptor inhibitor? Or any positive allosteric modulator of GABAA receptors?
In my case I found with them some relief. In addition of disodium cromoglycate(Mast Cell stabilizer).
But still not found the necessary remedies to get out of this continue state of sickness...
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Pelvic Magnetic Resonance Imaging (March 2018):
prostate of conserved size showing some slight hyperintense areas in the peripheral region predominantly in third that could be suggestive of slight post-prostatitis changes. There are no suspicious lesions of malignancy in the prostate. Seminal vesicle without alterations. Perineal region without significant alterations.
I think this test should be replicated by more members during arousal induced POIS. If tests all positive, this could be a proof of the auto-immune theory.
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Vandemolen, remember we poisers don't have always exactly the same symptoms....
Have you tried any 5-ht receptor inhibitor? Or any positive allosteric modulator of GABAA receptors?
In my case I found with them some relief. In addition of disodium cromoglycate(Mast Cell stabilizer).
But still not found the necessary remedies to get out of this continue state of sickness...
No I did not try that. I want to wait my appointment with my immunologist first.
Have you seen this topic?
https://poiscenter.com/forums/index.php?topic=2839.msg25939#msg25939
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Neuropeptides can cause flushing and itching.
I am seeing that some neuropeptides are also neurotransmiters, like acetilcholine, epinephrine, norepinefrine, dopamine, serotonine....etc.
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No I did not try that. I want to wait my appointment with my immunologist first.
Have you seen this topic?
https://poiscenter.com/forums/index.php?topic=2839.msg25939#msg25939
Thank you Vandemolen. Sounds pretty much like the symptoms I feel on my back but I also did an MRI of all my backbone and only some hemangiomas were detected. Nothing else. No cysts. But I feel almost the same thing described on that post. This is why I think something regarding the nervous system is linked to POIS. Neurotransmiters are fully related with this I guess... And also... If you think about it... Any orgasm or arousal must be driven by the nervous system...to open bulbourethral glands (the ones containing the precum, just below the prostate)....
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Vandemolen,
What are your symptoms?
I am sick since 12 months ago and in my case is POIS related...
Can't seat, can't stand up for too much time, and having lot of dificulties to lay down on bed. Can't flex the lumbar vertebrae. Pain on knees and back at the level of several vertebrae when standing up for some time.... Really difficult situation also. My work is at risk to be loosed. Hope to find any solution as soon as posible. Need it.
Wish you as much luck as posible!
Hi Fernab.
You and I have almost the same symptoms.
Perhaps the pain I feel over the prostate in pois days
indicates some sort of unknown infection on glands and prostate
leading to neuro-autoimunity.
And the same out of pois in sick condition with these symptoms mentioned above.
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Yes HOD,
We two are really similar on symptoms.
I found some relief with Diazepam, trazodone and disodium cromoglycate right now. Have you tried these?
Before using trazodone I was using etoricoxib (a Cox 2 inhibitor). with whom I also felt relief. but I discovered that it is not compatible with trazodone. Another thing that I think helped me was Tramadol. but this one alone. or with the complement of a laxative because you can suffer fecal compaction as a side effect. but I only used it 8 days and then I went back to etoricoxib. and after about two or three weeks I noticed a good improvement. I have been searching and thinking for some time that it could be an infection. but I was in many infectologists and never found anything. How do you know it's an infection if you can not find anything? Have you ever found any infection result as being active?.... because this is the only way to conclude It is an infection. And also.... If It was due to an infection... Why my wife feels perfect?....someone else could get also this 'unkown' infection. But it is not the case. For that reason I decided long time ago to forget this posibility....
Another question.... have you ever used a drug called finasteride or some other (5-alpha-reductase inhibitor)?
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I have been searching and thinking for some time that it could be an infection. but I was in many infectologists and never found anything.
This is another indicator of auto-immunity.
I think this could be valuable for the current investigation team. I wish that I tested my prostate last time I did an testicular MRI. I highly advise people to do prostate MRI when aroused.
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Nas i agree.
Fernab, i tought on inflamation, not direct to possible infection strictly, but i tought on autoimune reaction neuroimune etc...
I teke benzos as i mentioned before, only in cases of " my life is in question"
, because it is adictive and need a lot time to detox....
I work now on different stuff to improwe me self on naturall way.
I will post this later.
I found coffee is the most helpfull for me when pois hit me. (i learned
how to dosing cofee without side effect).
What else helped me a lot, magnesium, oxide form is the worst,
discowered citrate and that hepled me a lot on manage heart palpilations and overall health.
About finasteride, i didnt never used that drug. But in my age of 15-16 to 22 i had wery severere acne (from 3 moonth antibiotic use i suspect),
and who knows what i didnt use in that time for my acne(my face was devastated) suffered a lot.
About cox2 who been helped to you,
that indicate prostagladins involved.
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When I'm exposed to precum for a while it can give me a burning sensation in my penile urethra. This burning sensation can lead to an urgency of urination. I don't need to go to the toliet (empty bladder) but it keeps signaling me, this will only happen when the burning happens prior to it.
Another weird thing is that a part of my lower spine will get affected by POIS. You will feel pressure in the lower spinal area and as the pressure increases my legs become weaker. When I'm exposed to precum while standing, I can literally tremble on my legs. When the arousal stops and the erection diminishes the trembling will vanish.
There are other examples but this make me think neurological systems are involved or affected.
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Another weird thing is that a part of my lower spine will get affected by POIS. You will feel pressure in the lower spinal area and as the pressure increases my legs become weaker. When I'm exposed to precum while standing, I can literally tremble on my legs. When the arousal stops and the erection diminishes the trembling will vanish.
There are other examples but this make me think neurological systems are involved or affected.
It's more likely that it's affected, if only we knew how though? the fact the inflammation is present in the prostate yet, there are neurological symptoms? And many other physical side effects, or the fact that I only get cognitive symptoms? Weird. Waldinger suspects that it's because of resultant cytokines from this reaction. Can different symptoms depend on specific cytokines in the body?
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I think the reason why dexamethasone works for me, is because corticosteriods decrease pro-inflammatory cytokines synthesis, thus reducing their population in the body, making the recovery time for me quicker.
NSAID's won't work because they only block prostaglandins, which is irrelevant if you don't have inflammation.
What we need, is to increase our anti-inflammatory cytokines or block the pro-inflammatory cytokines somehow.
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Finally, a really good test for POIS could be, to abstain from exposure to any sort of arousal for 7 days, then do an MRI to the prostate. Then take a half an hour watching porn or arousing yourself any other way. Then make another MRI and see if inflammation is now observed.
What do you think guys think? Can that be a valid test for POIS? Technically you can replicate that with urine test for urethritis (if you have POIS urethritis) pre and pro ejaculation.
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I think the reason why dexamethasone works for me, is because corticosteriods decrease pro-inflammatory cytokines synthesis, thus reducing their population in the body, making the recovery time for me quicker.
NSAID's won't work because they only block prostaglandins, which is irrelevant if you don't have inflammation.
What we need, is to increase our anti-inflammatory cytokines or block the pro-inflammatory cytokines somehow.
This is another one suppressing the release of inflammatory cytokines by T-lymphocytes: https://en.wikipedia.org/wiki/Ciclosporin
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This is another one suppressing the release of inflammatory cytokines by T-lymphocytes: https://en.wikipedia.org/wiki/Ciclosporin
I tried ciclosporin, but the pill I took was literally the last sheet in the pharmacy with only one month left on its expiration date. It didn't do anything when I took it. There are however ciclosporin shots, which I don't think I can inject myself, however it would be an excellent experiment.
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How much do you need to take and for how long before you will see effects? Any idea? Interesting it is used in Meibomian gland dysfunction which I have problems with.
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How much do you need to take and for how long before you will see effects? Any idea? Interesting it is used in Meibomian gland dysfunction which I have problems with.
Well from what I've read it is highly metabolized in the body, injection wise. So I'd say if it didn't not work for you, you don't have issues with your T-Cells.
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Muon and Nas, have you thought about Lymphocytic pleocytosis (https://en.wikipedia.org/wiki/Lymphocytic_pleocytosis). This is not what I would normally suggest as a cause for POIS, but it seems similar to what you guys have been talking about in the past few post.
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Muon and Nas, have you thought about Lymphocytic pleocytosis (https://en.wikipedia.org/wiki/Lymphocytic_pleocytosis). This is not what I would normally suggest as a cause for POIS, but it seems similar to what you guys have been talking about in the past few post.
Hey Nanna, I think it'd be really hard to convince any doctor to do a lumb puncture, especially while we don't show any signs of CNS infection. The only symptoms we have are only related to orgasm, which in it self would cause doctors to dismiss it entirely since non of them is familiar with POIS.
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My brother feels a burning sensation inside his backbone. He thinks that ECP is responsible for this.
Edit: I encountered this paper:
Decreased production of eosinophil cationic protein after successful immunotherapy (https://www.jacionline.org/article/0091-6749(91)91526-Y/pdf)
''We therefore conclude that decreased ECP may account partly for the clinical efficacy of imnunotherapy and measurement of ECP may provide a parameter to judge the response to immunotherapy.''
Another question that haunts my mind: Does ECP play a role in POIS? Perhaps the immunotherapy tackles the allergic-like component of POIS which is mediated by ECP.
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Hey Nanna, I think it'd be really hard to convince any doctor to do a lumb puncture, especially while we don't show any signs of CNS infection.
Hi Nas,
Everyone that I have talked to on the forum shows "signs" of infection (viral and bacterial), :D LOL! So far none of the POISers who are submitting medical data has tested negative for all 6 herpes types, for example: cytomegalovirus (CMV, HHV-5) (POIS patterns (https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788)). In fact almost everyone on earth has at least one of the 6 herpes infections (see Herpes prevalence (https://poiscenter.com/forums/index.php?topic=2683.msg25483#msg25483)). The locations of the infections in the body are different from person-to-person which produces different diseases for the same infection. The disease (and symptoms) of an infection are dependent on the location in the body where the infection occurs (location post (https://poiscenter.com/forums/index.php?topic=2683.msg23766#msg23766)). So even if my mom and I both have CMV, we will still have different diseases because the locations where the virus infects will be different. But lymphocytic pleocytosis is also caused by bacterial infection Borrelia (Lyme disease).
Lymphocytic pleocytosis (https://en.wikipedia.org/wiki/Lymphocytic_pleocytosis) is an autoimmune disease. You do not need to do a lumbar puncture to detect autoimmune diseases (that is what medical doctors do). Those who have the resources can look for haptens (https://en.wikipedia.org/wiki/Hapten) in the blood since they generally cross the BBB. Finding a hapten is probably the most direct way of identifying a type-4 hypersensitivity because the immune cells do not respond to antigens directly. You need either a hapten or an antibody to induce immune response. I am not trying to convince anybody that POIS is related to hypersensitivity. I am just pointing to something that might be related to topics that you and Muon have just discussed.
If you find someone who does not have a herpes infection, please let me know. Because if they are immune to these infections that could lead to a Nobel Prize in medicine!
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The only symptoms we have are only related to orgasm, which in it self would cause doctors to dismiss it entirely since non of them is familiar with POIS.
There is a thread devoted to POIS-like illness from activities that do not involve sexual arousal, orgasm or stimulation of any organs in the (classical) reproductive system (please see Non-arousal triggers of pois-like symptoms (https://poiscenter.com/forums/index.php?topic=2752.msg24705#msg24705)). Also some POISers (like me :) ) do not experience symptoms in their reproductive organs. So it seems that orgasm is one of several triggers for stress-induced illness, even if orgasm is the most important stressor. ;)
If you want to look for a protein or peptide in ejaculate that might be causing a type 4 hypersensitivity, it might be worth considering pH (acidity). Male semen is highly alkaline and female vaginal fluid is highly acidic. Since both men and women can experience POIS (https://poiscenter.com/forums/index.php?topic=2755.msg24730#msg24730), a peptide or protein inducing (hapten-dependent) hypersensitivity would have to be pH-stable over a wide range of pH values. Many proteins are not very pH stable, so this could narrow down your search!
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Hi Nas,
Everyone that I have talked to on the forum shows "signs" of infection (viral and bacterial), :D LOL! So far none of the POISers who are submitting medical data has tested negative for all 6 herpes types, for example: cytomegalovirus (CMV, HHV-5) (POIS patterns (https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788)). In fact almost everyone on earth has at least one of the 6 herpes infections (see Herpes prevalence (https://poiscenter.com/forums/index.php?topic=2683.msg25483#msg25483)).
Exactly! That's why I think that it's a big leap that you can just blame the immune response in POIS on dormant viral infections without presenting adequate evidence. Remember that POIS is an extremely rare disease and latent viral infections are extremely common.
However if you can provide evidence I'm more than open to it.
I don't personally have any sign of infection in the CNS, so my chances with a doctor is pretty slim.
Lymphocytic pleocytosis (https://en.wikipedia.org/wiki/Lymphocytic_pleocytosis) is an autoimmune disease. You do not need to do a lumbar puncture to detect autoimmune diseases (that is what medical doctors do). Those who have the resources can look for haptens (https://en.wikipedia.org/wiki/Hapten) in the blood since they generally cross the BBB. Finding a hapten is probably the most direct way of identifying a type-4 hypersensitivity because the immune cells do not respond to antigens directly. You need either a hapten or an antibody to induce immune response. I am not trying to convince anybody that POIS is related to hypersensitivity. I am just pointing to something that might be related to topics that you and Muon have just discussed.
I'm not really familiar with Lymphocytic pleocytosis, maybe I'll ask my GP and see if I can figure a way to test for this. How do you connect this issue to POIS though?
There is a thread devoted to POIS-like illness from activities that do not involve sexual arousal, orgasm or stimulation of any organs in the (classical) reproductive system (please see Non-arousal triggers of pois-like symptoms (https://poiscenter.com/forums/index.php?topic=2752.msg24705#msg24705)). Also some POISers (like me :) ) do not experience symptoms in their reproductive organs. So it seems that orgasm is one of several triggers for stress-induced illness, even if orgasm is the most important stressor. ;)
True, perhaps there are different types of POIS, but I can assure you that beside cigarettes, arousal and ejaculation are the only triggers for me. And urethritis and potentially prostatitis are observed after ejaculation in my case. So at least for me, it's looking closer to an autoimmune reaction.
If you want to look for a protein or peptide in ejaculate that might be causing a type 4 hypersensitivity, it might be worth considering pH (acidity). Male semen is highly alkaline and female vaginal fluid is highly acidic. Since both men and women can experience POIS (https://poiscenter.com/forums/index.php?topic=2755.msg24730#msg24730), a peptide or protein inducing hapten-dependent hypersensitivity would have to be pH-stable over a wide range of pH values. Many proteins are not very pH stable, so this could narrow down your search!
Good idea! But I don't really have sufficient knowledge in biochemistry to know when a protein is acidic or alkaline, but I do believe that it is produced in the prostates.
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I wrote here a lot about how isnt posible to diagnose cronic lyme disiese 100%, you can hawe it but cant get diagnosed.
This is cronic hiden infection and only imunocompromised people get that condition.
We hawe evidences that we are imunocompromised.
This "bacteria"(some people think that this isnt bacteria) hawe ability to hide from imune system like herpes viruses do for exemple, infect then hide on nerve cells(imunity cant atack them in there in nerve).
Fernab asked the quest,,, why if there is infection, why my wife no have symptomes, well this is the answer why.
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Dexamethasone weakens the immune system yet it helps me. I think this directly debunks the compromised immune system, at least for my case.
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Everyone that I have talked to on the forum shows "signs" of infection (viral and bacterial), :D LOL! So far none of the POISers who are submitting medical data has tested negative for all 6 herpes types, for example: cytomegalovirus (CMV, HHV-5) (POIS patterns (https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788)). In fact almost everyone on earth has at least one of the 6 herpes infections (see Herpes prevalence (https://poiscenter.com/forums/index.php?topic=2683.msg25483#msg25483)).
Exactly! That's why I think that it's a big leap that you can just blame the immune response in POIS on dormant viral infections without presenting adequate evidence. Remember that POIS is an extremely rare disease and latent viral infections are extremely common.
Hi Nas,
Some of your concerns about rarity have been discussed here (https://poiscenter.com/forums/index.php?topic=2683.msg23766#msg23766), but I will give a brief summary so you do not have to read it all. Many of the diseases caused by herpes viruses are rare diseases (post (https://poiscenter.com/forums/index.php?topic=2683.msg23765#msg23765)). POIS is a rare disease, but having a rare disease is not rare. In the same way that most people have latent infections, most people also have diseases (including rare diseases). But not everyone has the same disease. One person might have Parsonage-Turner syndrome (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4463779/), while another person has Guillain-Barre Syndrome (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5733958/) or vagus nerve palsy (https://www.ncbi.nlm.nih.gov/pubmed/7402669). All of these are rare diseases caused by common infections. Some people have POIS, but others have prostate cancer (Ref1 (https://www.ncbi.nlm.nih.gov/pubmed/22851253), Ref2 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5529902/), Ref3 (https://link.springer.com/article/10.1186/s40880-016-0079-1)).
Two factors that make a disease rare are the location of the affected organ in the body and the unique status of a persons immune system. NORD list over 1200 rare diseases in it's database. And while most of the world does not have POIS like us, we also do not have most of the diseases that the rest of the world has. It is easy to think that everyone else is doing well when you are suffering, but you only see them when they are feeling their best and they only see you when you are feeling your best. Here is a list of diseases currently known to be caused by infections (list of diseases post (https://poiscenter.com/forums/index.php?topic=2683.msg23765#msg23765)).
However if you can provide evidence I'm more than open to it.
Great, here is the evidence:
(1) In 2010, Ashby and Goldmeier treated POIS with the NSAID COX inhibitor diclofenac. In one patient of the two patients, diclofenac relieved symptoms by 80 percent. Ashby and Goldmeier suggest a neuroendocrine mechanism for POIS (Ref (https://www.ncbi.nlm.nih.gov/pubmed/20214722)). To the best of my knowledge, this COX-1/COX-2 inhibitor is currently the only medication that has shown success in the scientific literature for treating POIS. I discuss the relevance of COX inhibitors in this thread (post (https://poiscenter.com/forums/index.php?topic=2502.msg21497#msg21497))
(2) Patterns in the POISer data can be found here (POIS patterns post (https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788)).
(3) Here are three case studies in humans for epinephrine and norepinephrine triggered illness due to viral shedding:
- Stress-related activation of Epstein-Barr virus (1991) (https://www.ncbi.nlm.nih.gov/pubmed/1654167)
- Reactivation and Shedding of Cytomegalovirus in Astronauts during Spaceflight (2000) (https://academic.oup.com/jid/article/182/6/1761/916184)
- Herpes Virus Reactivation in Astronauts During Spaceflight and Its Application on Earth (2019) (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6374706/)
In these cases, people who have compromised immune systems get sick whenever norepinephrine is released in their body. This is a neuroendocrine response (https://poiscenter.com/forums/index.php?topic=2900.msg26917#msg26917) to different types of stress. Their illnesses vary, but are all caused by epinephrine/norepinephrine induced herpes reactivations (similar to orgasm). So now we know that triggering sickness with neurotransmitters (released during orgasm) is a plausible explanation that already occurs in other instances of stress-induced illness.
(4) Four POIS research groups have proposed neuroendocrine triggers for POIS:
- Progesterone deficiency, (Selwyn Dexter, 2009 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3028282/))
- neuroendocrine malfunction, (Ashby and Goldmeier, 2010 (https://www.ncbi.nlm.nih.gov/pubmed/20214722))
- mu-opioid receptor dysfunction, (Jia Yin, et al, 2015 (https://www.ncbi.nlm.nih.gov/pubmed/25630453))
- neurobiological mechanism, (N. Depreux, et al, 2018 (https://www.sciencedirect.com/science/article/pii/S1698031X1730064X))
Also in Depreux, et. al. they state that semen proteins did not produce an immune reaction in one POIS patient:
"Skin prick tests and intracutaneous tests with autologous diluted semen with negative results were performed. Immunoblotting (https://www.sciencedirect.com/topics/medicine-and-dentistry/immunoblotting) and western blot (https://www.sciencedirect.com/topics/medicine-and-dentistry/western-blotting) of the patient's autologous semen showed negative results...
...To complete the study, we intended to rule out other possible causes such as urological, hormonal, or neuropsychiatric disorders."
-Negative allergy study in a case of postorgasmic illness syndrome (POIS) (https://www.sciencedirect.com/science/article/pii/S1698031X1730064X) (N. Depreux, et al, 2018)
Here is a useful POIS literature review (post (https://poiscenter.com/forums/index.php?topic=2932.msg27717#msg27717)).
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Also since you experience urethritis, you may be interested in this:
Clinical Characteristics of Herpes Simplex Virus Urethritis Compared With Chlamydial Urethritis Among Men (2017) (https://journals.lww.com/stdjournal/Fulltext/2017/02000/Clinical_Characteristics_of_Herpes_Simplex_Virus.13.aspx)
Thanks for your great questions Nas! :D
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Hi nanna1,
So basically, herpes virus (any form of the family, HSV-1, HSV2, Citomegalovirus, etc...) Is the original cause of suffering POIS?
Is that already proved?
In my case. I have HSV-1 (mouth lips, since I was a child). Eipstein-Bar since long time ago (don't know exactly since when but far before I began having POIS). Citomegalovirus this one seems to be the most recent. But I remember that I already had POIS and Citomegalovirus came negative (that let me conclude It is not caused by Citomegalovirus, in my case). Here is all my Serology (Post #54, on the results thread):
https://poiscenter.com/forums/index.php?topic=2684.45
Can be assured that POIS is herpes virus family (any of them) caused?
In the case HSV1 or HSV2 were responsable. Seems a possible vaccine even as a therapy (not only for those who have not yet contracted any of these two viruses) is near to be discovered:
http://www.virology.ws/2018/05/24/a-live-attenuated-herpes-simplex-virus-vaccine-candidate/
I see you have mentioned mu-opioid receptors as possible relathionship with POIS. I remember I used Tramadol for a few days (8 if not wrong). I felt a Big relief first days. Decreasing this relief along these 8 days. But, when I stopped it's use. I think I remember I began to be much better the days after I stopped it's use. So this mention strikes me a little, because Tramadol is a pure agonist of mu-opioid receptors....
What about other posibilities such us have been using 5-alpha reductase inhibitors (like proscar or finasteride?)
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What about other posibilities such us have been using 5-alpha reductase inhibitors (like proscar or finasteride?)
I took finasteride for several months - unfortunately, it didn't help with my POIS symptoms. It has numerous side-effects, some of which have been reported to persist long after the finasteride treatment has been stopped.
https://forum.propeciahelp.com/
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Hi hurray,
I used finasteride during two years long and just a few months later I had stopped using it, my POIS symptoms began. So the known Syndrome as Post Finasteride.... I think could be perfectly another posibility of suffering POIS....
Indeed, there are some POIS sufferers that have felt some relief by using testosterone patches. I mean... I think (only as a possibility (not for sure until proven) that this drug may cause an hormonal imbalance in body.... Producing at last a crash into POIS....
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I used finasteride during two years long and just a few months later I had stopped using it, my POIS symptoms began. So the known Syndrome as Post Finasteride.... I think could be perfectly another posibility of suffering POIS....
This is a good point, maybe you have elevated progesterone? I think investigating that would be a good idea.
Edit: I saw that your progesterone is in fact low, so I don't know really.
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Just the opposite, a bit low progesterone... And little bit high prolactine as it seems happens to many other poisers....
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Just the opposite, a bit low progesterone... And little bit high prolactine as it seems happens to many other poisers....
Well low progesterone could lead to estrogen dominance, which results in many similar to POIS symptoms. How are your estrogen levels?
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Just the opposite, a bit low progesterone... And little bit high prolactine as it seems happens to many other poisers....
Well low progesterone could lead to estrogen dominance, which results in many similar to POIS symptoms. How are your estrogen levels?
My estradiol levels are 40pg/ml which is not clinically high, but still somewhat high.
https://drive.google.com/file/d/1e0PaO53o6DOgrVA4LJh1Z46ZoaInXa38/view
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Don't remember if I tested it.... Have to check it....
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I'll see if Tamoxifen is available and give it a go. sex hormones are known to make mood changed and brain fog, so ruling out estrogen is a good idea.
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Hi nanna1,
So basically, herpes virus (any form of the family, HSV-1, HSV2, Citomegalovirus, etc...) Is the original cause of suffering POIS?...Is that already proved?...Can be assured that POIS is herpes virus family (any of them) caused?
Hi fernab,
Science (the scientific method) doesn't allow us to prove something correct or true. Science only allows us to (1) prove something false (disprove) or (2) show a statistically significant correlation. Showing a statistically significant correlation requires large numbers test cases with a roughly equal number of cases in the control group. To the best of my knowledge, hypotheses involving infection, hormone or autoimmunity do not have sufficient test cases (POISer data) to reach statistical significance. But there are two cases that have reached statistical significance: immune deficiency (positive) (https://poiscenter.com/forums/index.php?topic=2695.msg24966#msg24966) and IgE (negative). Mast cell activation syndrome (MCAS) has been ruled out as a cause of POIS by POISer data (see post (https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788)). If someone has MCAS, it is probably just an additional disease that needs to be treated. For other conclusions we need more data.
One POISer's timed blood test data show clear signs of chronic uncontrolled infection (high IL-8), post-orgasm anti-viral immune response (increased IFN-gamma), post-orgasm immune suppression (decreasing IL-2), and immune deficiency (low lymphocytes). Similar test would have to be replicated in order to establish statistical significance. But this data set was part of the reason I started investigating infection in relation to POIS.
However, stress (sleep deprivation, emotional stress, injury, extreme temperatures) induced illness has been known and shown to be real for a long time and is described even in ancient medicine. Basically, when people become stressed out, they also become sick. Stress-induced illness is caused by a reactivation of latent infections (viral, bacterial and fungal) in the body. Our immune system is always working to suppress latent infections and fight off new infections. It was only recently discovered that epinephrine and norepinephrine trigger stress-induced illness when the immune system is compromised and cannot suppress latent infections. Many viruses and several bacteria will increase replication during stress (including HSV-1, HSV-2, VZV, EBV, CMV, etc...). So far this option (stress-induce illness) is consistent with all of the current POISer data and has not been ruled out by anyone's test. But we need more data from POISers to show statistical significance.
In the case HSV1 or HSV2 were responsable. Seems a possible vaccine even as a therapy (not only for those who have not yet contracted any of these two viruses) is near to be discovered:
http://www.virology.ws/2018/05/24/a-live-attenuated-herpes-simplex-virus-vaccine-candidate/
That is an interesting article. This is a similar way that the VZV (HHV-3) vaccine works. So I think a HSV-1/HSV-2 vaccine will be revolutionary! There are also treatments for herpes available today:
(1) intravenous vitamin C (https://poiscenter.com/forums/index.php?topic=2683.msg23776#msg23776): Vitamin C (ascorbate, ascorbic acid) increases anti-viral and anti-bacterial immunity, but it also directly kills viruses and bacteria. In published human trials: the effects of IV ascorbate on both viral and bacterial infections are faster acting and longer lasting than any other known treatment of infectious disease (see post intravenous vitamin C (https://poiscenter.com/forums/index.php?topic=2683.msg23776#msg23776)).
(2) Anti-virals (https://poiscenter.com/forums/index.php?topic=2683.msg23774#msg23774) and/or antibiotics: Anti-virals (for virus infection) and antibiotics (for bacteria infection) are the standard treatments partly because they have a low cost and health insurance companies are willing to pay for it.
(3) COX inhibitors (https://www.the-scientist.com/research-round-up/indomethacin-inhibits-cmv-replication-53578): All herpes viruses require prostaglandins from the E and F series (i.e. PGE2, PGFalpha2) to trigger their activation and replication. Blocking the conversion of arachidonic acid to these prostaglandins effectively prevents viral replication for not just herpes replication but other human viruses as well (Prostaglandin E2 As a Modulator of Viral Infections (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5306375/)). From my experience, pharmacological POIS relief requires COX-1, COX-2 and NF-kB inhibitors. The Betaherpesvirinae stack (https://poiscenter.com/forums/index.php?topic=2502.msg21497#msg21497) is basically a treatment-summary of what I have learned from the Ideas on Herpes Induced POIS (https://poiscenter.com/forums/index.php?topic=2683.msg23764#msg23764). I may be a professional scientist but I am an amateur pharmacist. Pharmacology is not my specialty, so don't take this as professional advice. Some people have benefitted from the Betaherpesvirinae stack but they won't share their experiences publicly. It seems that once people find relief, they stop participating and/or following the forum. I wish more people would share their experience with this stack because then we would not have so many discussions about theory and research papers. The results of the Betaherpesvirinae stack speak for themselves. The timing (~2 hours) of the Betaherpesvirinae stack and the specific combination of drugs is critical to its effectiveness. The drug combination is synergistic and has a combined effect that the individual drugs (taken alone) do not have.
A low arachidonic acid diet (vegan or mediteranian) coupled with omega-3 fatty acids (and CLA) also lowers prostaglandins and NF-kB, which is basically what I do.
I do not take corticosteroids. But for those who are interesting in how they works, here is some information:
"Steroid anti-inflammatory drugs act by inhibiting phospholipase A2 and the release of arachidonic acid from the cell membrane. They have the additional action of inhibiting expression of COX. These are the most powerful anti-inflammatory agents available and are used to treat a range of serious inflammatory disorders including arthritis, asthma, Crohn's disease, ulcerative colitis, psoriasis, eczema and others. (e.g. hydrocortisone, methylprednisolone, budesonide, beclamethosone)"
-Pharmacology in one semester: 11.02.5 Drugs that Inhibit Phospholipase A2 (https://sites.google.com/site/pharmacologyinonesemester/11-local-hormones/11-2-eicosanoids/11-2-5-drugs-that-inhibit-phospholipase-a2)
What about other posibilities such us have been using 5-alpha reductase inhibitors (like proscar or finasteride?)
I don't know enough about 5-alpha reductase inhibitors to comment on them, but thanks for the suggestion! :)
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I think unsuccessful trail with cox inhibitors and no sign of immune deficiency in my case rules out Nanna's theory for my case. For me there is clear auto-immunity present, but I am not sure how this auto-immunity results in brain symptoms. This is one of the mysteries that I have to decode for my case.
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I wonder how crazy the idea that all of these inhibitory symptoms of the brain are all caused by elevation in estrogen?
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Bad news: more than 10 types of my anti-PNECS is too low. PNEC is pulmonary neuroendocrine cell. I have not talked with my doctor yet. I have an appointment for next month but I saw my results at the website of the hospital. PNEC is associated with tumors. But is that when PNEC is too high or too low? When I googled I also saw that someone with CFS has low PNEC. After a vaccin of Haemophilus influenzae type B his PNEC has rised.
Good news: I tested negative for two kinds of tumors. The immunologist said it was ok that my anti-pnecs are low. If there was not any, then it would be problem. The bad news is that he sended me back to my family doctor. He said there is no immune problem for my hot flushes. Because the hot flushes come when I lean my back on the bench or couch it might have to do with the joints. My SI joint is swollen and I can feel there is a small ball. So I will aks my family doctor to look into that. The doctor already said that the small ball is no tumor.
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No so bad news then.... which is the SI joint?
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The sacroiliac joints are in the lower back.
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Ok. Now I understand.
Do you have any idea of which could you cause this flushes when you lean your back?
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Ok. Now I understand.
Do you have any idea of which could you cause this flushes when you lean your back?
Maybe my SI joints are infected. So when there is pressure on it my lower back gets warm. I hope my doctor will give an injection so the pain will go away and then maybe also the burning sensation.
This started with POIS. After a long day of work I masturbated at home for more than 3 hours. Sitting in 1 position. Maybe too much info haha but now you know why my joints got a major blast. I was also on antibiotics and that is very bad for the joints.
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You don't think that maybe It could be due in some way to POIS?
You think it's more because of something other than POIS? (Infection as you suggest?).
I mean specifically this problem you feel on your SI joint when putting pressure on it?
Please, let me know any update you have when visiting your Doctors about your case.If you don't mind, of course. I am really interested.
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POIS could play a role. Because there are others who have joint problems because of POIS. But there are other POIS-patients who do not have a joint pain. So that is why I am not sure. And there are also other POIS-patients who have hot flushes. I have joint and muscle pain since my POIS started almost 20 years ago. But the hot flushes came just 5 years ago. I think beacuse 5 years ago I started using a lot of antibiotics. So my joints get more tense. And also I just masturbate for too long. That is because I get POiS and the next time is about a month. So I delay the O. I know, not so smart.
Yes about a few days I will give an update here about the diagnose of my family doctor. Do you have similair problems?
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Yes, because of putting pressure. It began on testicles and perineal area. But after my last ejaculation the 'sensible area' to pressure has extended to buttocks and lumbar area. And after that I began to have pain also in the SI joint...
Maybe your case is not exactly the same, but would like to know any update. Thank you!
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Yes, because of putting pressure. It began on testicles and perineal area. But after my last ejaculation the 'sensible area' to pressure has extended to buttocks and lumbar area. And after that I began to have pain also in the SI joint...
Maybe your case is not exactly the same, but would like to know any update. Thank you!
Could it be that your pain is caused by The Pudendal nerve? My problems started 5 years ago. I remember that on a holiday I sat on a bike for 10 hours and at the end of the day I fell hard on my back. Maybe that could be my trigger?
Maybe I have chronic pelvic pain syndrome. The symptoms of patient 2 look like mine.
https://academic.oup.com/ptj/article/90/12/1795/2737819
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You don't think that maybe It could be due in some way to POIS?
You think it's more because of something other than POIS? (Infection as you suggest?).
I mean specifically this problem you feel on your SI joint when putting pressure on it?
Please, let me know any update you have when visiting your Doctors about your case.If you don't mind, of course. I am really interested.
My family doctor could not help me. The doctor does not think my symptoms is because of my SI joint. For my joint
I have to go to fysiotherapist. The doctor asked if I had fever. I said I do not think so, but I get really warm. She smiled. I said, but I can see that my neck, ears and chest get very red.
The doctor sended me to an internist. When I listened to the doctor I think she is thinking about somatically insufficient certified physical complaints. In other words she thinks it is something psychological. I do not want to rule anything out. So I made an appointment with a psychosomatic fysiotherapist.
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is the story of always with POIS .... quite possibly the internist will end up asking you to go see a psychiatrist. In that case, do not be offended or surprised. because POIS is 'invisible' to doctors ... they will not take you seriously if it turns out that what is happening to you is due to POIS.
It is what happened to me....
Please keep me updated if you don't mind, please!
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These are my test results for some hormones.
This test is from may 2018. I had not had any kind of emition before this test. I think I was in abstinence like right now:
FSH: 4.53 mUI/ml
LH: 2.97 mUI/ml
Progesterone: 0.19 ng/ml (LOW in men should be between 0.28 and 1.22
Prolactine: 13.70 ng/ml (in my test 13.2 is the upper limit, so seems to be a bit HIGH)
Testosterone: 4.18 ng/ml
Free testosterone: 9.7 pg/ml
Cortisol: 10.74 ug/dl
I found those results. Prolactine included. But all are normal. Except for progesterone that was LOW.
Could that be linked to POIS in any way?
Your testosterone is low. Maybe your non arousal triggers have to do with low testosterone? And your sled accident could have given psychisomatic problems. Maybe you thought it was because of the accident but it was low testosterone?
I also blamed antibiotics for my hot flushes, but I think low testosterone is my problem. I did not eat meat since I was a kid. When I was 18 I started feeling depressed for no reason. My problems became bigger when I stopped doing sports and I gained 20 kg. That must have had a bad effect on my testosterone and maybe also POIS. My POiS became bad in 2010. It was then when I did a bloodtest for testosterone for the first time. It was 11. I has to be above 12.
It is too bad that some people filled in ‘normal’ behind their testosterone level at the blood test topic. Because 12 is also normal, but a bit low. There are men who have normal levels, but they have the symptoms related to low testosterone. On a Dutch website I read that a guy had level 15, but his doctor gave him TRT. He said he felt much better. Described it like he had a different body.
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I really wish we had access to brain scans beyond just simple MRI and ECG. Stuff like neuroimaging, a scan with a functional or metabolic sensitivity beyond a simple CT or MRI, single photon emission computed tomography, etc.
It's so frustrating though when doctors are just not willing to further investigate this illness even though it is ruining most of our lives.
If any has contact with university connected neurologists please either visit them or share their contact information. And please if you have access to it. Do further tests than MRI's or ECG's.
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I think we have to be cautious when drawing results from a single hormone test at a special time of the day. Hormones levels can fluctuate hugely over 24 hours. When we come out in the daylight cortisol levels skyrock. But that doesnt mean they are normal at night. The same is probably true with testosterone. I took my testerone at ZRT lab and a mean value was calculated on many test points during the day. The most optimal should be to compare 24 hour curves on hormon levels with normal curves.
Regarding this comment, usually the range that is given by the lab is the clinically significant range for illness diagnosis. So yes hormones, especially androgens, fluctuate but the range decides whether it is considerable for therapy or not.
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I think we have to be cautious when drawing results from a single hormone test at a special time of the day. Hormones levels can fluctuate hugely over 24 hours. When we come out in the daylight cortisol levels skyrock. But that doesnt mean they are normal at night. The same is probably true with testosterone. I took my testerone at ZRT lab and a mean value was calculated on many test points during the day. The most optimal should be to compare 24 hour curves on hormon levels with normal curves.
I moved your post here. Since this is the correct thread to discuss any result in the other thread...
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Thank you BoneBroth!!!
Very interesting information!!!
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I had a new blood test because of low testosterone. My free testosterone dropped a bit more, but still in the normal range. I am seeing an urologist about two weeks.
Testosterone: 11. RR: 10-30
Free testosterone: 280. RR: 174-729
SHBG: 21. RR: 13-71
LH: 2.0. RR: 1.5-9.3
FSH: 3.3. RR: 1.4-18.
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We should take a look at unique mediators of eosinophils to rule out activation of these cells. They play a role in non-IgE mediated allergies. Since a bunch of members are hypersensitive to food as well, it might be relevant to test these mediators.
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I've checked my cortisol level. It shows a normal result.
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Thank you for the serum immunoglobulin free light chain update Simon. Do you know whether you have done this while symptomatic? Disease/symptom severity is related to serum levels. It has a half life of around 6 hours I believe. It's probably unlikely that these are involved in POIS considering your data.
https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995
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Did a hormone-chart-test on a Bicom bioresonance machine today (7 days after NE-POIS).
Positive reaction (means I need more of theese):
- Cortisol
- Estradiol
- Noradrenaline
- Parathormon
- T3
- Substance P
- "Correcting hormonal inbalances"
Negative reaction (means I need less of theese)
- Tourine
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Did a hormone-chart-test on a Bicom bioresonance machine, 7 days after POIS (NE).
Positive reaction (means I need more of theese):
- Cortisol
- Estradiol
- Noradrenaline
- Parathormon
- T3
- Supstance P
Negative reaction (means I need less of theese)
- Tourine
I don't take these measurements seriously. It's pseudo science in my eyes.
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Sadly to say, but with that ridiculed attitude (demografix making-fun-of-alternative-medicin image), I suddenly realise three things:
1. If those comments by any means reflects the major driving forces in this forum, the prospects for an advancement in the search for a POIS cure here, for me suddenly seems hopelessly far away.
2. If the tentacles of Big Pharma (wich are recognized by such inscientific outbursts), as with almost all other disease-associations, also reaches inside this still free-thinking forum, you can all kiss the POIS-hope goodbye forever, just like with cancer, arteriosclerosis and all other endemic diseases that has become a "business with disease", rather then a genuine field of research for a cure (which, by the way, has been around for a long time, if not ever).
3. I might rethink spending time here, bouncing ideas and sharing my results open heartedly for everyone's common interest.
Please, at least keep such comments, if you really need them, in a separate thread.
"We cannot solve our problems with the same thinking we used when we created them." - Albert Einstein
Update 2019-07-23: I see that demografix image is obviously removed
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I think you are missing my point BoneBroth. These results are not results at all. I went to two alternative doctors who were using these machines and neither of those could explain the method they were using to me. I even question them further by asking some basic physical priniciples of electrical resistance and resonance. They did not have any knowledge about basic physics which the machine makes use of.
One of them told me my kidney was lowered. After a hospital visit and a scan later it turned out it wasn't the case. The method they are using is highly controversial and is not a standard for diagnostic testing. We are getting nowhere if standards are not kept high. I'm not here to ridicule you. Post what you want but I'm not taking those results seriously perhaps others will. These folks have created a market for themselves with their machines.
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Sadly to say, but with that ridiculed attitude, I suddenly realise three things:
1. If those comments by any means reflects the major driving forces in this forum, the prospects for an advancement in the search for a POIS cure here, for me suddenly seems hopelessly far away.
2. If the tentacles of Big Pharma (wich are recognized by such inscientific outbursts), as with almost all other disease-associations, also reaches inside this still free-thinking forum, you can all kiss the POIS-hope goodbye forever, just like with cancer, arteriosclerosis and all other endemic diseases that has become a "business with disease", rather then a genuine field of research for a cure (which, by the way, has been around for a long time, if not ever).
3. I might rethink spending time here, bouncing ideas and sharing my results open heartedly for everyone's common interest.
Please, at least keep such comments, if you really need them, in a separate thread.
"We cannot solve our problems with the same thinking we used when we created them." - Albert Einstein
Hi Bone Broth,
I think all you miss is a little historic perspective about this thread to better understand the kind of reactions you got. Originally, this thread was an idea of Muon. The goal was to create a thread where could be gather medical tests results in one single place on the forum, rather than have them scattered across all threads. Results like blood works, MRI, scan, etc... The idea was clearly to gather here the results obtained through mainstream medical science. There was an intent to make them more available for scientific analysis of POIS. this is why it is in the Research board of the forum.
However, this does not mean at all that this forum is not open to alternative treatments and alternatives ideas. It is just that you have posted your results in a thread of the " Discussion/Communication Research" board, that is dedicated to officially recognized results, the kind you get from exams and tests prescribed by physicians and specialists. There is another board on the forum called "General Alternative Causes and Treatments of POIS", at https://poiscenter.com/forums/index.php?board=7.0 . I think this is where you should re-post about the results you had, and about the follow up you will do with these results ( I am not familiar with the test you mention, but it seems to be an alternative medicine test, not a test done by a physician in a hospital or a medical clinic). So, I suggest you start a new thread on this board, which is, if you consider the number of threads in it, a very popular board on the forum.
There is not one single position on the forum about alternative tests and methods. You can have members who do not believe in those ( the answer you got from Muon shows that he does not give those any credits). There are members more open to hear about alternative methods, espacially to hear about actual results other members got from these alternative methods. You are still free to think what you want, and others too. We just make sure, as moderators, that all point of views are expressed in respect, and commented about in respect.
Sorry for the confusion. The title of this thread, which says "Medical results", may be clear for some, but not for everyone. I hope this post will also help othersbetter understand about the purpose of this thread.
Thanks for your understanding.
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"I went to two alternative doctors who were using these machines and neither of those could explain the method they were using to me."
Oh really! Muon, in most of our lifes we are taking decisions based on things that we cannot explain and is not scientifically proved. In fact 99,99% of the history of human development we have worked our life by solving problems without the need for any scientific method or peer-reviewed articles, and still here we are (now sicker then ever, despite western medicine). Even the most highly regarded and Nobel Prize rewarded physicist don't have a clue about the true nature of gravity and why it is pulling his body to the ground. He just knows that it does so, and can to a certain point describe it mathematically. Magnetic resonance imaging (MRI) are used at all hospitals and still you would get the same answer from doctor who uses that device: "Sorry, we cant explain why particles emit magnetic fields!" It's the same with bioresonance. The physics involved might not be completely understood.
But I do understand when someone, who has been serioulsy sick for decades, who went to mutliple of doctors, suddenly becomes well after a few bioresonance treatments. I understand when an animal who dont know that it is gettting treatment gets better. And this is happening daily! I've seen it, I work with those people! So if "doing what works" is the major guiding principle in our lifes, why should we dismiss it when it comes to our health? I tell you why. Because of money! Big Pharma is trying to brainwash the population to believe that we are not in control of our own health and that we should leave all decisions about that in the hands of someone else - the MD doctors who are greatly financed and manipulated like punch dolls by the pharmaceutical industry and medical establishment, that was founded with support from the biggest quack, and snake oil salesman of all time - William Rockefeller, father of "Standard-oil" John Rockefeller who stated that "competition is a sin!".
Quantum, more then half of Bicom machines are used at state-funded hospital doctors around the world, and many in highly respected german hospitals. Then, who are we to decide that the outcome from this standard medical test is not suitable in this non-state-funded, non-scientific, non-doctor financed forum? Silly! This is medical tests result as any and if you dont like it, just keep it for yourself or ignore it, but don't downgrade it.
I'm not at all interested of what you laymen, or an occasional doctor, has to say about the reliability of other peoples medical test resuts. My focus is on finding an ease or cure of POIS, and I don't care whatsoever if such cure is based on "established science", "psuedoscience", folk remedy or plain wizardry. The focus is on getting well and trying to solve the POIS-puzzle by all means.
So I would recommend that we focus on this and stop taking the high moral, excluding some medical tests and not others. As an open-minded, alternative thinking member I prefer taking into acount all tests and judge them myself.
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Then, who are we to decide that the outcome from this standard medical test is not suitable in this non-state-funded, non-scientific, non-doctor financed forum?
It's not a standard medical test. There is zero proof of the relationship between the position of the meter and the levels of substance P in your body.
This is medical tests result as any other.
No it is not. This is a critical thinking error on your side.
If you dont like it, just ignore it, but don't downgrade it.
I will ignore it but I do appreciate your intention to post results here make no mistake about that.
As an open-minded, alternative thinking member I prefer taking into acount all tests.
This isn't a test for these parameters period.
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If someone here publish an image of a MRI test (that is used on all hospitals), you also have to dismiss that image on the same grounds. There is not a single proof of how magnetic resonance imaging (MRI) works it its core. So likewise, if you ask any doctor who uses it they will give you the same answer as if you ask a Bicom doctor: "Sorry, science can't fully explain magnetic fields, we dont know how this device works in it's core, but ovbiously the end results works for the patients, and that is all that matters".
My MD-doctor even dismissed a 200 dollar do-it-at-home testosterone blood and saliva test that I ordered from respected ZRT laboratory (earlyer published here), just because "we dont use such tests here, we only do our ordinary blood test (that show a spot value once in a day). I mean where should we draw the line? "This isn't a test for these parameters period.". What? Are you the one who knows and decides such things, above the heads of others?
Dude! Let's not fall into the narrow perspective of main stream medical science. That road only leads to a never ending row of false hopes for cures. Have they ever found a true cure for any endemic disease though trillion dollars spent for decades of research? Will it be diffrent for POIS? Of course not. If the progress on this research field falls into the hands of the medical establishment, in 50 years from now, and after millions of dollars spended, there will at best be a FDA-approved drug that is still not a cure but merely a life-long symptom reducer with a bunch of new severe side effects added. That is how the medical machinery works, founded by John D Rockefeller (https://worldaffairs.blog/2015/10/20/how-rockefeller-founded-modern-medicine-and-killed-natural-cures/).
Sorry if I have been too lengthy about this in this thread about medical test results! The subject deserves a thread by its own. :)
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MRI is a validated technique and results can be replicated by other MRI devices. Go the another Bicom doctor without telling that person your previous results and test the same parameters you will end up with different results. Or better do a mainstream medical test for the same parameters and again you will end up with different results.
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The subject deserves a thread by its own. :)
You’re more than welcome to start one :)
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Hi BoneBroth and Muon,
What I see is that your points of view are quite different, and I do not think you will reach an agrrement anytime soon.
Muon's definition of what is acceptable has mainstream medical exams and result is very conservative. He will recognize what is already widely accepted by most of the MDs out there.
BoneBroth is far more open and more inclusive, and accept a treatment as valuable even if supported only by a limited number of MDs or clinic, and is still highly controversial for many MDs in general ( I do not know of this therapy, but a quick search shows that it is still controversial - see https://www.drweil.com/health-wellness/balanced-living/healthy-living/bioresonance-therapy-better-diagnostic-method/ ).
There is no way we are going to draw a clear line, and you could both go on for eons and this test and that test and ths other test, and why it is valuable, or why it is recognised and why it is not. I hope you will just let each other think as they choose too.
It's okay of Bone Broth is more open to alternative or less recognized, newer methods. It is also ok that Muon is more fund of widely recognized methods, more in line with the mainstream medicine. Newer methods are not all deceptive, of course, and some will finally make it in the mainstream arsenal accepted by all doctors, once they get more tests and have been developed to a point where results are consistent and interpretation of those results is well established. On the other side, not all mainstream medical methods and medication are part of a business model by Big Pharma or any other corporate powers, and many diseases are cured by conventional methods.
For POIS, currently, there is no alternative method neither conventional method that is known to relieve POIS, let alone cure it. All we have is the few empirical successes shared by our members. So, guys, be patient, and let's just tolerate each others point of view. And, if anyone has any success with any method, it will always be a good thing to share it on the forum. From there, anyone is responsible to decide what is appropriate for himself to try or not try, and consult with his health professional about this.
As it is obvious that you will not agree with each other, I hope you can just agree that you disagree, and leave it at that :)
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Muon. Easy for you to say. Do you have some real evaluation about the statement "end up with diffrent results" on Bicom devices or is it just your own experience by a handful of trials? Bicom also treat the symptoms you know, so after one treatment the symptom might be gone, and therefore does not show up on another (or the same) Bicom device. Well, if you base this on your own (or some others) experience then my words would weight as heavy as yours when I say that my experiences are that diffrent Frequency analysis techniques do give me the same results.
And how can we know that the mainstream medical test is correct or correct interpreted? Two diffrent blood tests for cortisol will also end up way differently on THE SAME main stream laboratory, depending on at what time of the day you do it! Just because something is "main stream" doesn't mean that it is correct done or show correct values. On the contrary. Main stream methods develops slow and becomes outdated. Standard hormon test methodology are highly criticized and not used by true specalists in the area because they dont give any useful clues.
Take for example belgian MD doctor Dr Thierry Hertoghe who represent the fourth successive generation of physicians working with hormonal treatments since 1892 (after Eugene Hertoghe, former vice president of the Royal Academy of Medicine in Belgium, and Luc and Jacques Hertoghe, endocrinologists), president of the International Hormone Society (over 2 500 physicians), and of the World Society of Anti-Aging Medicine (over 7 000 physicians). Dr Hertoghe trust on saliva tests, 24-hour urine tests and he states that the main stream ACTH-stimulation tests for cortisol is beeing wrong administred at hospitals and therefore gives a false result: "Unfortunately, in most clinics, the test is done by injecting 250 microgram of ACTH, a huge overdose. Almost any adrenal glands, even weaker ones, will react to this overdose.". If we could get his attention on the POIS issue perhaps real progress would be made.
Update: I just saw Quantums wise words above which sums this digression from the subject up well. No I don't have any problem with agreeing on disagreeing with Muon, however what triggered me from the beginning was probably demografx's image that ridiculed alternative medicine. It's gone now so I rest my case and "looking forward" to a new horrible 7 days POIS week since last nights NE, canceling all plans for the weekend. Waiting for the next Nanna1 stack shipment, arriving too late, "life" goes on...
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...demografx's image that ridiculed alternative medicine. It's gone now...
Sorry. I removed it as soon as possible so as to avoid conflict.
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It's really sad to see how POIS's desperation leads towards seeking alternative medicine and pseudo-science. I fully blame that on protocol restricted doctors; basically anything not written in their books is in their patient's head, leading them to seek out alternative medicine doctors who'll say yes to anything. But I guarantee, guys, that if we stick with concrete medicine we will figure this illness faster, than to rely on nothing explanations.
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There are no such thing as "alternative medicine doctors". There are just DOCTORS. Some are MD, some are ND, some are both MD and ND. And it's far more likely for a MD to transfer to "alternativ medicine" than a ND to transfer to main stream medicine (if it ever happens!) because it's a question of waking up from an incorrectly orthodox symptom approach (that hardly existed over 100 years ago) to a holistic, biochemical, functional way of thinking (that has been around for millennia). That process is never backwards.
There are most respectable MD-doctors, even Nobel Price winners that promotes certain fields of alternative medicine. And when they do it for a long time enough people start calling that main stream medicine! What? Something that is alternative medicine cannot "become" main stream medicine. It's still alternativ medicine! Alternative medicine is not a field of medicine anyway - it's just the collection name for a tousands ways of treatments that focus on self healing instead of the 20th century fabrications "symptom-removing" and "cut off". Orthodox medicine don't have knowlede about the bodys ability to heal itself, they are illiterates in this field, and if self healing from a disease with "no cure" happens in an ambulatory settings it's explained away with such things as "miracles" and "sunshinestories", or in worst case "oh, its your medicine that worked wonders, not the vitamin pill you which you happened to take simultaneously"
I guarantee you, Nas, that if you stick with "concrete medicine", whatever that is, you will NEVER figure out the cause and cure for POIS. Main stream medicine might have terrorised the earths pouplation during the last 100 years but it's leading to a dead end which more and more people start to understand, even MD's. There is no future for main stream, orthodox, school medicine more then an enourmous unnessesary suffering.
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I’d really like to be openminded, but “concrete medicine” saved my life - - twice: once with major (5-way) bypass open heart surgery and traditional meds, then major surgery and traditional meds for a deadly-serious diverticulitis attack. If I went **outside** the “concrete medicine” route, I’m sure I’d be dead by now. I’ve seen it happen to others - - far too often. :(
POIS research from all our $funding is headed toward “concrete medicine” - - and most of us (we funded the upcoming research ourselves) couldn’t be happier with the prospect of a cure.
ps - traditional medicine via the endocrinology route helped my POIS enormously. Steadily for the last 10 years.
I’m not trying to put a total damper on alternative routes. If chanting & herbs (just an example!) can successfully treat someone’s POIS, I’m all for it.
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That is a question of what come first - the chicken or the egg? If John Rockefeller never lay out the ground for state-funded medicine - where 99% of all people end up today when they get ill - your situation would have been much diffrent now. Then they would for example have found that you were going towards heart problem and diverticulitis much earlier and reversed that process by for example cellular medicine (nutrients). No by-pass needed. However, they would still offer by-pass operations for the very few that would still need that.
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Not very convincing. But I respect your right to have your alternative views. Thank you.
And best wishes.
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I'm just saying that just because school medicine offers by-pass operations, doesn't mean that alternative medicine would not, if the situation had been the opposite (state-funded alternativ medicin an all hospitals, and school medicine only at private clinics). Neither system dismisses acute surgical procedures. So I believe your making a logical thinking error.
By the way, there is a misunderstanding about the definition on "alternativ medicine". There is no such thing as "alternativ medicin medical field". If your doctor for example prescribes you iron tablets, is he prescribing alternative medicine? If you buy Viagra (developed by nitric oxide-expert and nobel price winner "alternative medicine" doctor Louis Ignarro working for the nutrition industri), are you buying alternative medicine products? If you get medical acupunkture or medical yoga, are you getting alternative medicine? And as I said earlier, even bioresonance is included as hospitals. So in school medicine there are ALOT of "alternative medicine" as well.
There are just two VIEWPOINS on how the body works. School medicin (wich is just about 100 years old) mainly focus on suppressing symptom by artificial substances (supress functions, removing tissues, changing the internal physics) and have very little knowledge about the cause-and-effect biochemistry, the bigger picture. "Alternative medicine" viewpoint look at the whole chain between cause and effect (holistic view), and adjust the cause (wich only has to be done with natural methods) because they understand that when the cause is gone, the body itself fixes the symptoms in 99% of cases without any artificial assistance or substances. Self healing.
Why dont school medicin do this? There is just one simple answer. The cause of school medicine - Money with disease! Big Money! If you remove that cause, there will just be alternative medicine left, and a healthy popuation.
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I agree with you BoneBroth.
Big pharma and economic interests are strongly affecting the health system worldwide. Mainstream medicine is strongly positioned and supported by a hugely powerful pharmaceutical industry. And I think this leads to think that official medicine is the most reliable... It's a question of fear of the unknown and be suspicious just because it's not something official.
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That's how the game is played. And why do pharmaceutical companies spend all their miillion dollars on artificial substances? Are artificial substances mostly better than naturals? Of cource not! The other way around! Naturals has worked wonders for ages. Artificials are not recognized by the body and are treated as poison in 100% of the cases (for naturals maybe 1%, in the case of some herbs). Thats why there are never ending lists of side effects on drugs leaflets and basically nothing on naturals. So why all the money? Because of two simple reasons that anyone in the business will agree on:
1. The legislation (again, founded by mr competition-is-a-sin-so-make-drugs-based-on-our-oil John Rockefeller) demands them to cough up an enormous amount of money to have their drugs approved by the FDA.
2. They will only have their money back and make a profit if the products are patented, so they are mainly researching the effects of artificial substances on the body (not the side effects that show up on those poor voluntary people who get some pocket money for participating in the drug-studies). No natural substance can be patented, hence they do not put their money in that bag, (besides some side of product line).
If the drug, unlikely, becomes approved on the first run (and here's where research cheating playes a big role, since they have to statistically manipulate the results so the side effects doesn't look too bad on the FDA-application), the price of the product will be about a hundred times higher than a natural product (or therapy) that will do the same job. So, to connect to beginning of this thread, if POIS research is "kidnaped" by the medical establishment (which almost every other disease assosiations has been, because they always put a "scientific medical board" on top with orthodox MD's) the outcome will be as with all other diseases: There will be donation campaigns, there will be research in absurdum, there will be promises of cures in "only 10 years from now" Wooo! (its always 10 years ahead - short enought to iinstill hope, long enought to forget the broken promise). Then after 30 years there will be a very expensive prescription drug, that will soon be be stopped by the FDA due to "unexpected side effects" and deaths, and the circus starts over again untill they have something that doesnt cure a shit (cancer/HIV/type 2 diabetes/asthma/alzheimers blah blah blah...). Am I the only one saying this? NOO! The list of whistleblowing research MD's that are jumping off the mad big pharma train is growing longer every day.
Do I whine at the present POIS research? No! I'm not sufficiently familiar with this particular matter yet, tought I feel it's in the making. I just want you to understand what you might expect if things turnes out "as usual". And if noone has ever reflected over this matter before here, it might be about time someone does. Today I recieved "Nanna's POIS stack" products - 100 % naturals, no FDA fee needed, no 10 years waiting, cheaper then drugs, no prescription, no doctor wiseacre, works for many members, no adverse side effects (if any) - just as it should be. :)
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Low neutrophils high lymphocytes
https://ic.steadyhealth.com/low-neutrophils-and-high-lymphocytes
Neutrophenia.
https://en.wikipedia.org/wiki/Neutropenia
Neurotrophils should be in the highest percentage in wbc count.
https://www.medicalnewstoday.com/articles/265373.php
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Here is another idea; cytokines and other markers in the ejaculate could be investigated. Perhaps there is some sort of inflammatory process going on in the genitourinary tract which you won't be able to detect in blood.
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1600-0897.2009.00786.x
https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1600-0897.1994.tb00853.x
https://link.springer.com/article/10.1007/s11255-013-0400-8
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A question that arises: is POIS because of an inordinate innate immune response? The adaptive immune response (T/B cells) may kick in later and may not contribute much to the symptoms we experience.
The innate immune response is non-specific and has fixed pattern recognition receptors. It just responds to stuff that it believes have not been in the body before AND ALSO believes are from germs. Given that the body state changes quickly after orgasm (in some cases just a few minutes for the sneeze to occur), it could be because the innate immune cells in the g-u tract sense something ("the antigen") that is part of the fluids released.
It will be interesting to find if there are any blood tests that can identify if the innate immune response is overly activated following orgasm. As far as I could understand - the cells of the innate immune system are typically located near the tissues - natural killer cells, mast cells, macrophages, dendritic cells etc. Neutrophils are also part of the innate immune response but they are circulating in the blood and migrate into tissues during infection/injury.
Refer: https://www.researchgate.net/publication/8395744_Effects_of_Sexual_Arousal_on_Lymphocyte_Subset_Circulation_and_Cytokine_Production_in_Man
"Sexual arousal and orgasm increased the absolute number of leukocytes, in particular natural killer cells (CD3-CD16+CD56+), in the peripheral blood. In contrast, T cell (CD3+) and B cell (CD3-CD20+) subpopulations as well as the production of interleukin 6 and tumor necrosis factor alpha remained unaffected by sexual activity. These findings demonstrate that components of the innate immune system are activated by sexual arousal and orgasm."
As an aside - it's quite possible (a hypothesis again) for some of us there is a genetic or epigenetic defect in the way immune tolerance is established in the g-u tract. By the time of puberty, if tolerance to self-antigens (not just spermatozoa but all of the components in the seminal fluids) is not properly established, the immune system would attack it naturally. Maybe that's why some of us developed POIS during the onset of puberty. Refer https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2364484/
" Immune mechanisms have evolved to actively suppress the autoimmune response to spermatozoa within the genital tract. Unlike in the circulation where CD4+ helper T lymphocytes predominate, CD8+ suppressor/cyto-toxic T lymphocytes are the most prominent T cells in the epididymis and vas deferens. In addition, spermatozoa suppress pro-inflammatory lymphocyte immune responses, possibly by inducing production of anti-inflammatory cytokines. Anti-sperm antibody production is induced in the male genital tract when a local infection or disruption in the genital tract physical barrier leads to an influx of CD4+ T cells...The mechanisms to inhibit immunity to sperm may hinder effective immune elimination of micro-organisms in the male genital tract."
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Some seem to acquire it later in life which seem to make a case for involvement of the adaptive immune system. One cell type that couples the innate to the adaptive immune system is the dendritic cell. If the immune system is involved the natural barriers, which is the first line of defense, seem to be failing somehow. Maybe there isn't a self-antigen involved but the body is reacting to the cytokine content of sperm. Groups of cytokines could be investigated.
Active dendritic cells release cytokines from the IL-12 family (12, 23 ,27), macrophages: IL-1, IL-6, TNF-alpha, IL-8, IL-33, CD8+: Perforin, granzyme B, Fas ligand etc. My mother gets a burning sensation inside her vagina upon contact with sperm, there might be something going on with recognition processes: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3570961/
This paper also describes carbohydrate/lectin signaling, reminds me of how some members are sensitive to food like carbs, perhaps there is a connection.
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There are many cytokines. Please don't take me wrong, but I feel we could end up in a wild goose chase - even if certain cytokines are elevated, we may not be in a position to find out what's causing the release of those cytokines.
I think taking a biopsy of prostate tissue should be considered. The advantage is direct histopathological evidence. Unfortunately it is an invasive procedure and costs $. This procedure is usually done in urological clinics for prostate cancer diagnoses. A lab pathologist could easily identify tissue abnormalities - if there is inflammation, infection etc. For example, in the case of infection, CMV-infected cells show up as intranuclear "owl's eye inclusions".
I don't know if any such similar procedure is possible for the seminal vesicles.
Also, lab tests for semen cultures could be useful to rule out micro-organisms. Many clinical labs have tests for semen bacterial cultures. I am not sure if clinical microbiologists have some methods for detecting viruses in the semen.
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Does anyone know a biopsy test would help contribute to find answers to POIS?
Let me explain, I have a physical manifestation that I have not hear much about this forum.
After an O my lips, tongue and face physical attributes changes drastically.
The lips and tongue would swell as it look like I have minor form of angioedema, not so bad but its obviously that doesn't look normal. My face feels loose and saggy, if I run my fingers across it feels like its not firm.
Other than these physical appearance I have your typical POIS symptoms.
I went to an 3x allergist but didn't tell them about POIS because
1. Obviously with such a rare condition it's unlikely they ever heard of it.
2. They might think I'm crazy.
3. I want to converse and explain my issues that something that they can see.
So 2 out of the 3 allergist suggest me I can try an biopsy.
Ok, now if I get an biopsy, whether its from the tongue or lip, what kind of answers can we get back?
I do believe from the physical appearance perspective it seems they are due to inflammation or histamine.
What I'm afraid is that after getting the biopsy and results, it will be like,
Doc: Ok, I got your results. It seems there is major inflammation to the tissue/cells.
Me: How do I fix this?
Doc: I don't know.
Me: :|
I do also experienced POIS symptoms and swelling manifestation without sexual stimulation such as,
a. Exercise
b. High calorie diet
c. Vitamin D
d. Late sleep or little sleep
Two temporarily solutions I have experienced are,
a. Fasting for 2-3 days
b. B9/B12 (this lasted for 2 weeks which I thought I was cured and no longer have effect)
I also have some data I can contribute such as,
1. Regular blood test
2. Pituitary
3. Thyroid
If there a test if like me try first for comparison please let me know which.
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Thanks, itsmel...and to everyone else contributing to this thread!
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... I have a physical manifestation that I have not hear much about this forum.
After an O my lips, tongue and face physical attributes changes drastically.
The lips and tongue would swell as it look like I have minor form of angioedema, not so bad but its obviously that doesn't look normal. My face feels loose and saggy, if I run my fingers across it feels like its not firm...
Hi itsmel,
It is difficult to tell what this might be without the medical test, but what you described could be a mild form of Lymphadenopathy (https://en.wikipedia.org/wiki/Lymphadenopathy). It is a disorder of the lymphatic system and the lymphatic system is an important part of the immune system. Here are some resources on the lymphatics (Wikipedia article (https://en.wikipedia.org/wiki/Lymphatic_system) and Youtube video (https://www.youtube.com/watch?v=I7orwMgTQ5I)).
A biopsy of the tissue (lips, tongue, face) may not yield much unless you have a local bacterial infection. But if the swelling only happens after orgasm, this does not sound like a bacteria. The fluid causing the swelling may be more beneficial. For example, a lumbar puncture (https://www.mayoclinic.org/tests-procedures/lumbar-puncture/about/pac-20394631) examines the fluid in your spinal cord and brain to see if their are any signs of disease affecting the nervous system. A liquid biopsy similar to a lumbar puncture (but for your tongue) may be helpful. But it is still not clear to me why your allergist recommended a biopsy in the first place. Did they give you the standard Skin Prick Test?
Low vitamin C levels are correlated with high histamine, inflammation and immune dysfunction. Several people have tested for histamine and thyroid blood levels and they were normal (medical patterns post (https://poiscenter.com/forums/index.php?topic=2695.45): https://poiscenter.com/forums/index.php?topic=2695.45). We still need test for the following to rule out potential causes:
1. norepinephrine (noradrenaline) blood test: post-orgasm same day
2. vitamin C (ascorbatic acid) blood test (https://www.findlabtest.com/lab-test/vitamin-deficiency-test/vitamin-c-lc-ms-ms-quest-929): during POIS illness symptoms
3. lymphocyte blood panel (T cell, B cell, NK cell levels) (https://poiscenter.com/forums/index.php?topic=2695.msg26750#msg26750): before orgasm and during POIS illness symptoms
4. complete blood test (https://www.mayoclinic.org/tests-procedures/complete-blood-count/about/pac-20384919): during POIS illness symptoms
If you are willing to share your medical data on the "Gather and Post Here Your Medical Tests Results (https://poiscenter.com/forums/index.php?topic=2684.0)" thread, please do!
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Just got the result from cortisol/DHEA saliva test (4 measure points). Samples were taken the day after POIS symptoms from NE:
Cortisol (nmol/L)
AM: 14 (reference 7-30, optimal 14-25)
Noon: 2.4 (reference 2.1-14, optimal 5-10)
Evening: 4.0 (reference 1.5-8, optimal 2-5)
Night: 0.99 (reference 0.33-7, optimal 1-4)
DHEA: 176 pg/mL (reference 137-336)
Laboratory comment:
"AM cortisol level appears adequate, although the suboptimal diurnal cortisol pattern is suggestive of early (Phase 1) HPA axis (adrenal gland) dysfunction."
My comment:
Results supports my cortisol hypothesis: To combat POIS-inflammation the adrenals needs cortisol. Long time cortisol secretion causes adrenal exhaustion and low adrenal cortisol response. 1-3 days after NE inflammation is hight, so cortisol should skyrock, but it is lower then optimal and in lower part of reference.
DHEA is within range, but low, which indicates low cortisol (DHEA and cortisol are secreted in same levels in healthy adrenals). However, there are other anabolic hormones that are also secreated together with cortisol: Aldosterone and testosterone. I have earlier tested below reference in testosterone in saliva (not normal in blood at a point years later). I also have high scores on deficiencies on aldosterone and testosterone at the questionaire at Dr herthoges homepage here: https://www.hertoghe.eu/wp-content/uploads/TOUS-LES-TEST-1.pdf
What next?
Possibly laboratory analys of aldosterone, testosterone and possible progesterone.
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I don't think you read the lab comments correctly, your cortisol levels are completely normal but they are suboptimal meaning you could be headed to a dysfunction in the future but not currently.
Otherwise this should actually eliminate the involvment of Cortisol in your POIS.
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Are you answering me or b_jim?
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Are you answering me or b_jim?
Sorry I was addressing your post and for some reason I thought it was b_jim's.
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But suboptimal cortisol levels in a state of total body inflammation is not a good sign.
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Simon got high Prolactin: https://poiscenter.com/forums/index.php?topic=2684.msg24995#msg24995
Sex Hormones August 2019 (All normal except very high Prolactin)
Albumin 42.1 g/L (Range: 35 - 50)
SHBG 25.4 nmol/L (Range: 18.3 - 54.1)
FSH 4.19 IU/L (Range: 1.5 - 12.4)
LH 4.7 IU/L (Range: 1.7 - 8.6)
Oestradiol 61.5 pmol/L (Range: 41 - 159)
Testosterone 11 nmol/L (Range: 8.64 - 29)
Free Testosterone - Calc. 0.255 nmol/L (Range: 0.2 - 0.62)
Free Androgen Index 43.31 Ratio (Range: 24 - 104)
Prolactin 638 mU/L (Range: 86 - 324)
DHEA Sulphate 5.180 umol/L (Range: 4.34 - 12.2)
Some ideas:
Prolactin mediates psychological stress-induced dysfunction of regulatory T cells to facilitate intestinal inflammation (https://gut.bmj.com/content/63/12/1883.short)
Prolactin down-regulates CD4+ CD25hiCD127low/-regulatory T cell function in humans (http://citeseerx.ist.psu.edu/viewdoc/download?doi=10.1.1.817.2847&rep=rep1&type=pdf)
Release of prolactin and lh and histamine-containing cells in brain (https://link.springer.com/article/10.1007/BF01250328)
Prolactin and autoimmunity (https://www.sciencedirect.com/science/article/abs/pii/S1568997211002837)
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High prolactine can also be a symptom of low dopamine.
"One of the main regulators of the production of prolactin from the pituitary gland is the hormone called dopamine, which is produced by the hypothalamus, the part of the brain directly above the pituitary gland. Dopamine restrains prolactin production, so the more dopamine there is, the less prolactin is released. Prolactin itself enhances the secretion of dopamine, so this creates a negative feedback loop."
Ref: https://www.yourhormones.info/hormones/prolactin/
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High prolactine can also be a symptom of low dopamine.
Ref: https://www.yourhormones.info/hormones/prolactin/
My aunt has this: ''disturbances to the menstrual cycle...''
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Does anyone know a biopsy test would help contribute to find answers to POIS?
So 2 out of the 3 allergist suggest me I can try an biopsy.
Ok, now if I get an biopsy, whether its from the tongue or lip, what kind of answers can we get back?
There is one guy here who did a lip biopsy because of his dry mouth. You can find it inside the thread about sjogren's syndrome. He has a borderline positive score. Positive means lymphocyte infiltration around certain glands. Perhaps POIS triggers lymphocyte infiltration and this correlates to inflammation. Now to think of it what if this happens in the urinary tract or GI tract?
Bluesbrother got interesting results when you consider GI theories: https://poiscenter.com/forums/index.php?topic=2684.msg24765#msg24765
Blood Panel:
- Elevated Creatinine: 142 umol/L (62-115)
- Low Lactate Dehydrogenase: 124 U/L (125-220)
- Low White Blood Cell Count: 3.45 10e9/L (3.88-10.49)
- Low Neutrophil Count: 1.47 10e9/L (1.56-6.52)
Stool Sample:
- Positive test for Entamoeba histolytica: (negative)
- Positive test for Norovirus GI: (negative)
- Low Bifidobacter: 8.1 10e9 (>8.9)
- High Staphylococcus spp.: 6.5 10e5 (<1 10e4)
- Low SIgA: 473 ug/mL (510-2040)
- High Lactoferrin: 13.35 ug/mL (0.07-7.2)
Other tests:
- Low gfr: 53 ml/min/1.7 (>60)
- Prostate: Normal, apart from small chalky spots
Interleukin-8 gene expression in the human colon epithelial cell line, HT-29, exposed to Entamoeba histolytica (http://www.parasitol.kr/journal/view.php?doi=10.3347/kjp.1995.33.4.357)
''the early host response to E. histolytica is characterized by an infiltration of neutrophils''
So could his low neutrophil count correlate with his positive Entamoeba histolytica test due to infiltration?
''These results suggest that acute inflammatory reaction by E. histolytica may be initially triggered by proinflammatory cytokines such as IL-8 secreted from epithelial cells of the colon.''
This is the same cytokine that is elevated in patients with Norovirus: Norovirus in symptomatic and asymptomatic individuals: cytokines and viral shedding (https://onlinelibrary.wiley.com/doi/full/10.1111/cei.12772)
''the symptomatic group generally exhibited a greater elevation of T helper type 1 (Th1) and Th2 cytokines and IL‐8 post‐challenge compared to the asymptomatic group''
I wonder if there is a link somewhere between patients with low neutrophil counts, my IL-8 and Th1 cytokine elevation, and bluesbrothers findings.
They also talked about HT-29 cells in the first article. Bob Morane talked about that Rifaximin had effect on him. Rifaximin is able to modulate IL-8 release from HT-29.
Diagnostic Value of Calprotectin in Irritable Bowel Syndrome
and in Inflammatory Bowel Disease (https://www.researchgate.net/profile/Piero_Portincasa/publication/229079700_Diagnostic_value_of_calprotectin_in_irritable_bowel_syndrome_and_in_inflammatory_bowel_disease/links/54a3d2100cf267bdb9046160.pdf)
''The expression of IL 8 was enhanced during the acute infection and it continued to be increased in the patients who suffered from postinfectious IBS...''. Postinfectious IBS?
Bluesbrother's lactoferrin is high which might indicate GI disease. Also what are these chalky spots on his prostate?
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Hopeoneday wbc count test results.
Eosinophil gran : 0.1 ref( 0-7)
Neutrophils gran : 43,0L ref (44-72)
Basophils gran: 0.5 ref(0-1)
lymphocytes 52 ref(20-40)
I did found my WBC count test results done 12 years before, they are complitly the same.
Did they look at what type of lymphocyte was elevated HOD?
https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172
''(++)presence of cryoglobulins.''
Patients with cryoglobulemia are sensitive to temperature changes and can show blood flow problems due to changes in viscosity.
POIS patients with temperature sensitivity and blood flow problems could check this one out. I had times where it felt like blood flow encountered more resistance than usual. But this could be NO or autonomic related as well. Other molecules might influence viscosity. Viscosity affects sheer stress I believe, sheer stress signals to release NO. If you have NOS issues the endothelium might not respond properly to sheer stress.
The reduced skin blood flow might cause a pale complexion, which is seen in POIS patients.
BLOOD HYPERVISCOSITY IN CRYOGLOBULINEMIA: TEMPERATURE SENSITIVITY AND CORRELATION WITH REDUCED SKIN BLOOD FLOW (https://onlinelibrary.wiley.com/doi/abs/10.1038/icb.1978.14)
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POST COITAL ALLERGY - A CASE REPORT OF POST ORGASMIC ILLNESS SYNDROME (https://www.revmedchir.ro/index.php/revmedchir/article/view/1798/1449)
Thanks, Muon. Passed along to our POIS researchers.
Also invited the author to the forum.
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Intralymphatic Immunotherapy With Autologous Semen in a Korean Man With Post-Orgasmic Illness Syndrome (https://www.sciencedirect.com/science/article/pii/S2050116118300199)
''The IgE immunoblotting of autologous seminal fluid incubated with serum from the patient and 1 healthy control showed IgE binding bands at 14, 16, 34, and 55 kD (eFigure 3). The IgE binding band at 55 kD was particularly prominent before ILIT, but it was fainter when seminal fluid was incubated with serum obtained from the patient 8 months after ILIT.''
IgG4 BINDING FACTOR IN HUMAN SEMINAL PLASMA IDENTIFIED AS HEAVY CHAIN OF IMMUNOGLOBULIN (https://www.tandfonline.com/doi/pdf/10.3109/01485019408987789)
''We have demonstrated that human seminal plasma contains a 16-kD protein that interacts with human IgGl and mouse IgM [4, 7, 81]. In this paper data are presented showing that human seminal plasma contains another factor with an estimated M, of 50 kD that interacts specifically with human IgG4.''
Here are some seminal plasma proteins that bind with immunoglobulins. These two papers have found proteins of similar mass. They could be useful when examining binding bands.
My brother got elevated IgE and I got elevated IgG4. Perhaps these two are acting against specific proteins in seminal fluid. Could be protein masses 55kD (IgE) and 50KD(IgG4). There is a guy here on poiscenter with elevated IgG1 (16kD?).
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Did they look at what type of lymphocyte was elevated HOD?
https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172
''(++)presence of cryoglobulins.''
Patients with cryoglobulemia are sensitive to temperature changes and can show blood flow problems due to changes in viscosity.
POIS patients with temperature sensitivity and blood flow problems could check this one out.
The reduced skin blood flow might cause a pale complexion, which is seen in POIS patients.
BLOOD HYPERVISCOSITY IN CRYOGLOBULINEMIA: TEMPERATURE SENSITIVITY AND CORRELATION WITH REDUCED SKIN BLOOD FLOW (https://onlinelibrary.wiley.com/doi/abs/10.1038/icb.1978.14)
Intresting Muon, they didnt look what type of laymphocaytes are elevated.
I tought , if there is cryoglobulemins in my bload,
it is not from cancer angle,
because i would be two meter "under" till now.
Temperature intolerance in my
case( i am "dead in hot weather").
This will be intresting to test
for poisers.
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Vitamin b12 and D are low:
https://drive.google.com/file/d/1H-Gx4YaeMJTJiiQSertvGyHSLSmZx24f/view?usp=drivesdk
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3099351/table/T3/
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Did they look at what type of lymphocyte was elevated HOD?
https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172
''(++)presence of cryoglobulins.''
Patients with cryoglobulemia are sensitive to temperature changes and can show blood flow problems due to changes in viscosity.
POIS patients with temperature sensitivity and blood flow problems could check this one out.
The reduced skin blood flow might cause a pale complexion, which is seen in POIS patients.
BLOOD HYPERVISCOSITY IN CRYOGLOBULINEMIA: TEMPERATURE SENSITIVITY AND CORRELATION WITH REDUCED SKIN BLOOD FLOW (https://onlinelibrary.wiley.com/doi/abs/10.1038/icb.1978.14)
Intresting Muon, they didnt look what type of laymphocaytes are elevated.
I tought , if there is cryoglobulemins in my bload,
it is not from cancer angle,
because i would be two meter "under" till now.
Temperature intolerance in my
case( i am "dead in hot weather").
This will be intresting to test
for poisers.
''Mixed cryoglobulinemia (MC) is a systemic vasculitis of small to medium-sized vessels due to the vascular deposition of circulating immune-complexes (CIC) and complement. A leukocytoclastic vasculitis is the histologic hallmark of cutaneous manifestations of the disease, while a clonal B lymphocyte expansion in blood, bone marrow, liver, and spleen represents the underlying pathologic alteration responsible for the production of cryo-CIC and non-cryo CIC with rheumatoid factor activity.''
https://journals.lww.com/co-rheumatology/Abstract/2000/01000/Relation_between_infection_and_autoimmunity_in.9.aspx
B lymphocyte level could be elevated. Btw most of the cryoglobulemia cases are not related to cancer but to infection.
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Like IDO, arginase-1 is also a major immune suppressor. While IDO depletes tryptophan, arginase depletes arginine and causes a reduction in NK cell activity.
Arginase-1 inhibitor options for testing purposes:
Viagra (sildenafil), 50mg, 90minutes prior to orgasm
Cialis (tadalafil), 20mg, 2.5 hrs prior to orgasm
caffeine, 150mg, 90minutes prior to orgasm
citrulline malate, 7g, 90minutes prior to orgasm
Ideally orgasm should happen at the time of peak concentration of the drug in the body. The below graphs justify the wait times (prior to orgasm) for each drug.
(https://www.pfizermedicalinformation.com/sites/default/files/spl-images/652/viagra-06.jpg)
Figure 5: Mean Sildenafil (Viagra) Plasma Concentrations in Healthy Male Volunteers, from: https://www.pfizermedicalinformation.com/en-us/viagra/clinical-pharmacology
(https://www.dovepress.com/cr_data/article_fulltext/s155000/155040/img/DDDT-155040-F01.jpg)
Tadalafil (Cialis) pharmacokinetics from: https://www.dovepress.com/comparison-of-tadalafil-pharmacokinetics-after-administration-of-a-new-peer-reviewed-fulltext-article-DDDT
(https://www.researchgate.net/profile/Matthew_Layton/publication/301562749/figure/fig1/AS:379532663115776@1467499046570/Time-caffeine-concentration-profiles-for-five-conditions.png)
Caffeine pharmacokinetics from: https://www.researchgate.net/figure/Time-caffeine-concentration-profiles-for-five-conditions_fig1_301562749
All of these drugs have been independently shown to increase Natural Killer cells, increase NK cell activity and prevent immune deficiency of effector lymphocytes. Caffeine and citrulline malate are over-the-counter (OTC), can be taken together and are generally safer than the PDE5 inhibitors (Viagra and Cialis). None of the other arginase inhibitors listed above can be taken together because of drug interaction. Before testing arginase inhibitors check with your doctor to make sure you are healthy enough and there are no drug interactions with medications you are currently taking.
Other ways to increase NK cell activity:
Active hexose correlated compounds (AHCC)
liposomal vitamin C (ascorbate, ascorbic acid, and ascorbyl palmitate). (https://www.amazon.com/Premium-AHCC-Complex-ImmunoComplex-Andrographis/dp/B00H4GXZUU/ref=sr_1_40?keywords=quality+of+life&qid=1574694127&sr=8-40)
(https://i.imgur.com/V0yUSw3.png)
Vitamin C partitioning in the immune system. Lymphocytes and platelets require the highest vitamin C levels to function properly.
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Amazingly cool graphics!
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(http://jem.rupress.org/content/jem/203/2/269/F2.large.jpg)
TSLP(R) inhibitors/antagonists could block a POIS inflammation cascade upstream if this mechanism plays a role in POIS. Problem is that these are very expensive. One example is Telepezumab
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I highly doubt it will help my POIS but in your case maybe try it. You may never know until you try.
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I highly doubt it will help my POIS but in your case maybe try it. You may never know until you try.
I'm not Bill Gates. Check the prices.
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Ah and I thought you were Bill Gate's Dutch cousin.
My bad :D
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Ah and I thought you were Bill Gate's Dutch cousin.
My bad :D
I wish that was the case. I would have spent tons of money on POIS projects. This mechanism might play a role in the case of aswinpras06. He got Eosinophilia, neutrophilia and enlarged lymph nodes. I bet his IL-5 and IL-8 levels are high, besides elevation of unique mediators from eosinophils. A virus could also make use of allergic inflammatory pathways.
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Antiviral activity of Lactoferrin:
https://link.springer.com/chapter/10.1007/978-1-4757-9068-9_23
https://www.sciencedirect.com/science/article/pii/S1341321X14002864
https://link.springer.com/article/10.1007/s004300050049
https://en.wikipedia.org/wiki/Lactoferrin
The body is able to prevent intestinal infection by raising lactoferrin via innate immunity. What if there is a latent viral infection in the HT-29 cell lining and altering mucosal immunity throughout the entire body including the urogenital system? I once had an iron deficiency as a kid. What if the body raised lactoferrin against intestinal pathogen intrusion/attachment which did bind to iron lowering my iron levels? POIS might lower parameters which are beneficial against pathogens. Pathogens on their turn might activate allergic inflammatory pathways as discussed a few posts back.
I also wonder if the vagus nerve is able to modulate tight junctions.
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Lactoferrin is an ingredient of semene.
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VandeMolen's brothers got CD. He got POIS. All three may have dysfunctional Tregs in common.
Tregs are dysfunctional in vivo in a spontaneous murine model of Crohn's disease (https://www.nature.com/articles/mi201267)
''In conclusion, we have shown that in vivo depletion of Tregs by anti-CD25 Ab treatment increases the severity of intestinal inflammation in SAMP mice. Furthermore, using three adoptive transfer experiments, we have shown that Tregs in SAMP mice, including CD25−Foxp3+ cells, are dysfunctional. This study suggests that dysfunctional Tregs may play an important role in SAMP CD-like ileitis. In light of these findings, augmenting the number and/or function of Tregs in vivo may provide an effective new treatment modality for patients with autoinflammatory diseases, such as CD.''
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"
Temperature intolerance in my
case( i am "dead in hot weather").
"
I clearly have intolerence to hot temperature.
If I enter in a warm room it may cause me anxiety panic
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The Doctor of aswinpras06 made some remarks about - Likely infective etiology-.
Mitochondrial DNA can be released from mast cells which is seen by the body as a pathogen thus building up an innate immune response. Take a look at the next video fragment explaining this concept in detail: https://youtu.be/9QbZp3WcC1Q?t=2156
This could explain POIS induced fever in some individuals. These individuals coudl be tested for mitochondrial DNA and antibodies against mitochondrial DNA.
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https://poiscenter.com/forums/index.php?topic=2684.msg31355#msg31355
My Vit B12 level is elevated as well.
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https://poiscenter.com/forums/index.php?topic=2684.msg31355#msg31355
My Vit B12 level is elevated as well.
Hi Muon
Elevated B12 is not normal and requires immediate medical attention as per my pulmonologist. He has recommended to meet an allergist/immunologist as soon as possible to find out the cause. I am planning to to consult one within next 2 weeks. you also consult an doctor immediately to find out the underlying cause, because sometimes it may be a serious problem in the liver or kidney.
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I found this out myself by going through the archives of my local hospital. My active B12 has been tested numeral times by different specialist and always turned up elevated. They didn't tell me. My liver flares up now and then yes. I one time had an intense acute flare up that spiraled out of control. I did take an oral hydrogen peroxide solution because this had helped me with other things before and to my surprise this made me better on the same day, this was basically desperation mode the pain was that bad.
Doctors don't seem to care digging further into this matter. Hospitals have turned into production centers over the years, quantity over quality.
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You are from India, right aswinpras06? Have you considered contacting Geetha Desai?
MEDICALLY UNEXPLAINED SYMPTOMS EXPLAINED!!!! A CASE OF POST ORGASMIC ILLNESS SYNDROME (https://pdfs.semanticscholar.org/1eb8/93056353f17057297c1e3beba3f928381971.pdf)
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You are from India, right aswinpras06? Have you considered contacting Geetha Desai?
MEDICALLY UNEXPLAINED SYMPTOMS EXPLAINED!!!! A CASE OF POST ORGASMIC ILLNESS SYNDROME (https://pdfs.semanticscholar.org/1eb8/93056353f17057297c1e3beba3f928381971.pdf)
Thanks Muon. I am hearing about a doctor in India knowing about POIS for the first time. will try to contact her if possible, as she is in another city from where I live. It requires some planning and arrangement. If I get any useful info from her it will be great for us. Will post once I meet her.
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Does anyone else think that !!!! in a presumably scientific/medical paper headline can be considered suspect? Or is this a cultural deviation? A typo? I think it’s the same exclamatory-language emphasis that we see in suspicious, e.g., quackery-based, advertising.
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Human mast cell activation with virus-associated stimuli leads to the selective chemotaxis of natural killer cells by a CXCL8-dependent mechanism (https://ashpublications.org/blood/article/111/12/5467/23784/Human-mast-cell-activation-with-virus-associated)
https://poiscenter.com/forums/index.php?topic=2545.0
Does the IFN-g indicate a viral infection? Does the elevated 11b-PGF2-a indicate some mast cell activity? Are the low NK cells and elevated IL-8 due to selective chemotaxis of NK cells by an IL-8 dependent mechanism?
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From The relationship between serum sex steroid levels and heart rate variability parameters in males and the effect of age (https://www.journalagent.com/tkd/pdfs/TKDA_38_7_459_465.pdf):
In conclusion, serum sex steroids may have important effects on cardiac autonomic function in addition to their effects on reproductive function. While physiological levels of androgens were positively related with parasympathetic activity, estrogens were positively related with sympathetic activity in men. In contrast, decreased androgen levels in aging males have controversial effects on autonomic function. However, adrenal androgens seem to be more important for cardiac autonomic control. Further large-scale studies may shed light on the effect of adrenal androgens on autonomic functions.
From Gender, sex hormones and autonomic nervous control of the cardiovascular system (https://academic.oup.com/cardiovascres/article/53/3/678/328102):
Experimental data indicates the presence of receptors for gonadal hormones in the CNS, including in regions relevant for the functioning of the autonomic nervous system. Central administration of oestrogen enhances parasympathetic activity. In addition, there is evidence that testosterone enhances NA and NPY synthesis as well as reducing activity of NA clearance. Conversely, oestrogen enhances the activity of choline uptake and acetycholine synthesis. Studies with peripheral tissues also indicate that oestrogen is associated with increased synthesis and release of acetylcholine. All these observations are consistent with the previously discussed observations that, in general, parasympathetic responsiveness is greater in females and sympathetic responsiveness greater in males. Recent developments indicate that oestrogen may also modulate nerve density and survival via effects on nerve growth factor. In addition, the anti-apoptopic effects of oestrogen may explain why age related decline in autonomic activity is more evident in males than females.
Go to the supplementary data eTable1: https://www.sciencedirect.com/science/article/pii/S2050116118300199
Estradiol which is high, is positively related to sympathetic activity. Testosterone is low, which is positively related to parasympathetic activity. The net effect is sympathetic dominance/overactivity. This data could indicate that the patient's ANS balance is disturbed towards a sympathetic state.
The prevalence of (lifelong) premature ejaculation in poisers could indicate a sympathetic overactive ANS:
Autonomic nervous system dysfunction in lifelong premature ejaculation: analysis of heart rate variability (https://www.ncbi.nlm.nih.gov/pubmed/23102443)
The argumentation above does not apply to females and could therefore explain the prevalence of POIS in males compared to females.
Some poisers are mentioning that their POIS symptoms are less intense at an old age compared to when they were younger. Autonomic activity of males seem to decline with age.
Chronic SNS activity could alter immune homeostasis and affect GI inflammation/blood supply/motility leading to altered microbiome/leaky gut/IBD. Neural regulation of gastrointestinal inflammation: Role of the sympathetic nervous system (https://www.sciencedirect.com/science/article/abs/pii/S156607021300773X)
Ejaculation could activate the SNS even further and induce low grade neuroinflammation by releasing peptides like Neuropeptide Y which could be responsible for burning sensations: Neuropeptide Y: a new mediator linking sympathetic nerves, blood vessels and immune system? (https://www.nrcresearchpress.com/doi/abs/10.1139/y03-006#.Xe0fr5NKjcd)
The neuroinflammation could demyelinate nerves in the urinary tract sensitizing them to neuropeptides in seminal fluid leading to a myriad of new symptoms. Perhaps SNS activity over a long term could prime mast cells to be more reponsive to elements from seminal fluid as well.
''Conclusion: An unfavourable shift in the cardiac autonomic tone in men with lower testosterone levels was observed in response to a stressor. Understanding the role of sex hormones in modulation of cardiac autonomic tone may help guide risk reduction strategies in men.''
Testosterone is associated with the cardiovascular autonomic response to a stressor in healthy men (https://www.tandfonline.com/doi/abs/10.3109/10641963.2014.933966)
Sympathetic activity should be measured in poisers and needs to be objectified. Once that is established we can go from there on forward step by step.
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My brother: Elevated IL-8, Elevated Lp-PLA2 activity
Me: IL-8 which doesn't seem to respond to POIS and is always high as in chronic.
Lp-PLA2 activity and Ox-LDL could activate mast cells ---> IL-8
Is IL-8 a sign of artherosclerosis/microvascular dysfunction/mast cell activity?
Mast Cell Activation by Lipoproteins (https://sci-hub.se/https://link.springer.com/protocol/10.1385/1-59259-967-2:341)
Mast cells in vulnerable atherosclerotic plaques ? a view to a kill (https://onlinelibrary.wiley.com/doi/full/10.1111/j.1582-4934.2007.00052.x)
Relationship of lipoprotein-associated phospholipase A2 and oxidized low density lipoprotein in carotid atherosclerosis (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2724786/)
Oxidized Phospholipids, Lipoprotein(a), Lipoprotein-Associated Phospholipase A2 Activity, and 10-Year Cardiovascular Outcomes (https://www.ahajournals.org/doi/full/10.1161/ATVBAHA.107.145805?url_ver=Z39.88-2003&rfr_id=ori:rid:crossref.org&rfr_dat=cr_pub%3dpubmed)
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I got a vaccin to see if I have enough antibodies against Streptococcus pneumoniae (pneumococcus). The immunologist said that could be the reason why I have a lot sinititis. I also did a test for hiv, IgM, IgG (1, 2, 3 and 4) and IgA.
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Hiv came out negative, so that’s good. IgM was a bit low (like before). For Streptococcus pneumoniae (pneumococcus) I will get another blood test to compare it to the previous test.
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HIV...I could tell you right away that was going to be negative. Why are these doctors stuck in the same testing algorithms? This isn't going anywhere. What is the next doctor going to do test IgA again? I've got some abnormal parameters which you can check out why don't they do that? Testing the same stuff which turned out negative over and over again.
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Before spending money on medical test, it may be wise to review the following page:
https://poiscenter.com/forums/index.php?topic=2695.msg24788#msg24788
A good POIS test in my opinion is to repeat the lymphocyte/orgasm test from P. Haake, et al. (2004):
(https://i.imgur.com/6u2i9Sq.png)
"the orgasm induced a moderate but statistically significant transient elevation of the cytotoxic/suppressor T cell (CD3+CD8+) numbers (Fig. 2). In contrast, the absolute numbers of T cells (CD3+), T helper cells (CD3+CD4+), and B cells (CD3-CD20+) were not affected by sexual stimulation...the levels of LPS-induced proinflammatory cytokines (IL-6, TNF-alpha) remained unaffected by masturbation-induced orgasm...The effects of orgasm on peripheral lymphocyte subsets were restricted to NK cells and had minor or no effects on T or B cell subsets and showed no effects on (IL-6, TNF-alpha) cytokine production, indicating limited and selective effects of orgasm on immune system functions in parallel with its selective and short-lived neuroendocrine effects." -Effects of Sexual Arousal on Lymphocyte Subset Circulation and Cytokine Production in Man (P Haake, U Hartmann, et al., 2004) (https://www.researchgate.net/profile/Uwe_Hartmann/publication/8395744_Effects_of_Sexual_Arousal_on_Lymphocyte_Subset_Circulation_and_Cytokine_Production_in_Man/links/00b7d52f8e1b80712a000000.pdf)
Another good test is to measure blood urea levels outside of POIS (immediately before sexual activity) and then again about 10min after orgasm. Try not to urinate between the two test.
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It may be possible that one of these Interleukins could have dropped into normal range after orgasm just like TNF-alpha did:
https://poiscenter.com/forums/index.php?topic=2684.msg32284#msg32284
Suggestions: Check IL-6, VEGF, IL-33 and Substance P out of POIS.
Scroll all the way down to Table 4. Triggers of Mast Cells Without Degranulation:
Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders? (https://sci-hub.se/https://www.tandfonline.com/doi/abs/10.1080/1744666X.2019.1596800)
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Hiv came out negative, so that’s good. IgM was a bit low (like before). For Streptococcus pneumoniae (pneumococcus) I will get another blood test to compare it to the previous test.
Streptococcus pneumoniae (pneumococcus) was the same before and after I got a vaccin. I do not know what that means? Should it go up because of the vaccin? I have to wait a few weeks before I see the immunologist.
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Bluesbrother's elevated TNF-alpha (https://poiscenter.com/forums/index.php?topic=2684.msg32284#msg32284)
''hBD-2 represents the first human defensin that is produced following stimulation of epithelial cells by contact with microorganisms such as P. aeruginosa or cytokines such as TNF-alpha and IL-1 beta.'' (https://en.wikipedia.org/wiki/Beta-defensin_2)
Did anyone test for hBD-2 in feces or is Bream (https://poiscenter.com/forums/index.php?topic=2684.msg32993#msg32993) the only one who did this?
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(https://i.imgur.com/W4Fy9kW.png)
De Amicis, K., et. al., "Immunophenotypical Characterization of a Brazilian POIS (Post-Orgasmic Illness Syndrome) Patient: Adding More Pieces to Puzzle" (2019) (https://www.tandfonline.com/doi/abs/10.1080/0092623X.2019.1677835)
The patient tested negative for HIV.
Table 1 shows an immune deficiency of natural killer (NK) cells and B cells. Also there is an over expression of CD56- NK cell subclass, showing impairment of the innate immune response. The overexpression of monocytes relative to the healthy controls show increased adaptive immune activity.
"When a detailed evaluation of the effector cells involved in the immune response was performed, a monocyte increase and an NK cell decrease were observed in the patient with POIS in comparison to the controls, with a reduction in total B cells and normal T cells count. Some studies have shown a decrease of NK cell percentage in association with a reduction of activity of these cells in peripheral blood of patients with depression. Other mental disorders such as mental stress, autism and obsessive-compulsive disorder have also been reported to present lower NK cell activity."
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"To investigate potential drivers of the mild monocytosis frequently seen in MCAS [25]...":
Table 5. Common abnormalities in routine hematologic and serum chemistry tests found in the study population:
"WBCs: Monocytosis (relative or absolute) 44%"
Characterization of Mast Cell Activation Syndrome (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/)
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(https://i.imgur.com/ceDV0bW.png)
From Post-orgasmic illness syndrome: a case report (AM Attia, 2016) (https://f1000research.com/articles/2-113/v1)
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From same link: " ↑ ALT 38%, ↑ AST 40%"
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Compare Aswinpras06's results (https://www.dropbox.com/sh/5x2qmne0p3e1jnv/AACeKjqr6peSH5hWJdUhobqda?dl=0) closely with Table 5 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/). Much overlap. Coincidence?
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This is my Urine test showing elevated mucus levels: https://drive.google.com/drive/folders/1voKz6VVCs0umbO-G9ShNOGP5Qu9JTkn5
I usually get Urethritis after ejaculation.
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This is my Urine test showing elevated mucus levels: https://drive.google.com/drive/folders/1voKz6VVCs0umbO-G9ShNOGP5Qu9JTkn5
I usually get Urethritis after ejaculation.
Table 1: Genitourinary:
Often seen, rarely recognized: mast cell activation disease - a guide to diagnosis and therapeutic options (https://sci-hub.se/https://www.tandfonline.com/doi/abs/10.3109/07853890.2016.1161231)
Cystitis:
Mast cell activation syndrome (https://tau.amegroups.com/article/view/8090/8845)
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My brother's hematologic abnormalities. (https://www.dropbox.com/sh/2af7202xa3gqpiw/AACrvZK9pbVvp0kUXOAO1NCba?dl=0&preview=Bro+1-0+Bloedbeeld%2BIGSUB.pdf) Quite mild and always ignored. Compare to table 5 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5341697/) again.
Also my ALAT levels were elevated multiple times, I believe ASAT has found to be elevated once.
My aunt got persistent leukocytosis.
What you can do is creating a matrix (https://en.wikipedia.org/wiki/Matrix_(mathematics)) where the first row represents +200 mast cell mediators. The first column your hematologic/chemical abnormalities. And find out whether mediator X can drive abnormality Y up or down. With sufficient hits in a single column you could theoretically pinpoint a potential mediator(s) that is causing havoc.
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https://poiscenter.com/forums/index.php?topic=2684.msg32993#msg32993
"Human beta-defensin 2 is produced by a number of epithelial cells and exhibits potent antimicrobial activity against Gram-negative bacteria and Candida, but not Gram-positive S. aureus.". Ref (https://en.wikipedia.org/wiki/Beta-defensin_2)
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Vitamin b12 and D are low:
https://drive.google.com/file/d/1H-Gx4YaeMJTJiiQSertvGyHSLSmZx24f/view?usp=drivesdk
"Other observed deficiencies include copper and assorted B vitamins."
"...vitamine D deficiency by laboratoria criteria is often present in MCAS [192], though often with no clear correlation to clinical effects..."
Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome (https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf)
Thyroid (My results indicate subclinical hypothyroidism that does not require treatment):
THYROID STIMULATING HORMONE * 5.83 mIU/L 0.27 - 4.2
FREE THYROXINE 18.0 pmol/l 12.0 - 22.0
FREE T3 3.2 pmol/L 3.1 - 6.8
Antibodies were negative for autoimmune thyroid disease.
"Hypothyroidism (including Hashimoto's thyroiditis) and elevated levels of TSH are often seen in MCAS patients."
https://www.mastattack.org/2014/10/metabolic-issues-associated-with-mcas/
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Superoxide Dismutase [red cell] * 1987 U/gHb 1102 - 1601
Figure 1 (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4701915/)
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Hiv came out negative, so that’s good. IgM was a bit low (like before). For Streptococcus pneumoniae (pneumococcus) I will get another blood test to compare it to the previous test.
Streptococcus pneumoniae (pneumococcus) was the same before and after I got a vaccin. I do not know what that means? Should it go up because of the vaccin? I have to wait a few weeks before I see the immunologist.
Pneumococcus response was good. 6 types were very good and 3 types were ok. The immunologist said that I should go to a so called KNO doctor (throat, nose, ears doctor). It could be my adenoid that gives me sleeping problems and sinitus. This will not solve my POIS, but it can make the symptoms lower. She said that my IgM was a bit low, but not very low. It can be normal again.
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Maybe this could mean Droxidopa could be helpful for POIS?
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If anyone is interested in the antioxidant profile I took, here is a link to the test and also documentation:
https://biolab.co.uk/index.php/cmsid__biolab_test/Antioxidant_Profile
https://www.biolab.co.uk/docs/antoxpr.pdf
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Point of Order
The Gather and Post Here Your Medical Tests Results (https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787) was started based on weeks/months-long discussions by many POISers about the need for a centralized place to locate medical test data from POISers. It is a community resource and reference library that we can all benefit from. And while the data is not publishable or able to be cited in journals, medical researchers can use that voluntary medical data to gain clues and insights into the disease behind POIS.
In order to for scientist, our doctors and all of us to be able to use the Medical Data thread for research, it needs to be free from social discussions. Recently, there have been increased social discussions on that thread that might be more appropriate elsewhere. May I suggest a standard for posting to the Gather and Post Here Your Medical Tests Results (https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787) thread based upon its original purpose (https://poiscenter.com/forums/index.php?topic=2695.msg23891#msg23891).
Post there should include:
- medical test administered by a medical professional (example: doctor or nurse).
- the name of the tested parameter (example: homocysteine, blood (https://i.imgur.com/vBiVjGw.png))
- the numerical value (example: 6.1 umol/L)
- the numerical range (example: 5 - 15 umol/L)
- flag status (example: normal or *no flag)
(https://i.imgur.com/gF8UnSG.png)
Most medical test come with this information (example: complete blood count (https://i.imgur.com/NT5NbH8.png)). Or:
(https://i.imgur.com/Q3U7fpV.png)
However, some test just state the flag (Negative or Positive) (example: skin prick allergy (https://i.imgur.com/gBLxMS8.jpg) and autoimmune antibody (https://i.imgur.com/3NHK63L.jpg)). Also, doctor's notes may not contain all these parameters, but they are still useful on the Medical Data thread (example 1 (https://poiscenter.com/forums/index.php?topic=2684.msg25446#msg25446), example 2 (https://poiscenter.com/forums/index.php?topic=2684.msg30670#msg30670)).
A description/comment about the conditions under which the test was taken is also useful (examples: "1 hour after orgasm" or "outside of POIS symptoms"). It would be ideal if we could keep the description for each result to 2 sentences or less (example (https://poiscenter.com/forums/index.php?topic=2684.msg25435#msg25435)). Longer descriptions can sometimes contain opinions that reduce the scientific usefulness of the data and suggest publication bias (https://en.wikipedia.org/wiki/Publication_bias#:~:text=Publication%20bias%20is%20a%20type,publish%20or%20otherwise%20distribute%20it.) in the decision to post it.
Habits to avoid on the Gather and Post Here Your Medical Tests Results (https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787) thread:
- personal explanations (example: "Here is what I think the reason is for these results...", or "Because of these results I will try (or have tried) these supplements...")
- comments about other POISers results (example: "That homocysteine result is interesting. Let me share my knowledge and/or the supplements I have tried..." or "This test confirms my ABCD cell/hormone/immune theory...")
- social comments (example: "Thanks! I like these results!")
I understand that this forum is a form of social media. And many POISers expect social interaction from each post. But this Discussion Thread is the appropriate place for that social interaction and it was started to keep social commentary and personal opinions off the Medical Data thread.
The medical data thread was started for a specific purpose to help aggregate and disseminate data about POIS that comes from medical professionals (not other POISers). It is assumed that this data will have less bias than your typical forum post and is therefore easier to accept on scientific merit.
In the past, I have removed some of my own post on the Medical Data thread because of an idea I shared or posting habits that made the raw data (numbers) harder to find. I have also relocated some of my post from the Medical Data thread to this Discussion Thread (https://poiscenter.com/forums/index.php?topic=2695.msg23891#msg23891) so that researchers who may come to POIScenter can take the Medical Data thread more seriously. I believe that contributing my medical information (https://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052) to the Medical Data thread is both a scientific contribution and a personal sacrifice. It takes humility to do what is best for the POIS community and limit my own opinions and interpretations. I hope we can all do the same.
Forum members would be able to discuss the medical results of the official thread here:
https://poiscenter.com/forums/index.php?topic=2684.msg23787#msg23787
In this way, we keep clear the other thread. So, from now, there will be two separate threads.
1- The official thread of Results - Gather and Post Here Your Medical Tests Results - Only medical results will be posted, no discussion will be allowed.
2- This thread - Gather and Post Here Your Medical Tests Results - Discussion Thread It will only contain discussions about the results shown in the first thread. Needless to say, you can always use the results shown in the first thread to make your point in any other thread!
Thanks for your participation!
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If there's a way to enable moderation on that thread, it would be a good idea.
It's an easy mistake to post comments there, I've done it before.
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I suspect genetic mutations for my case related to choline processing. (for my case, I find autoimmune unlikely). see other threads for details
there are many related snps that aren't tested on 23andme but are done in genetic panels for CMS (I have not had them done yet). At a minimum from 23andme, I have double mutations in all three of the following, though I don't know if these alone are sufficient to explain:
rs16969968 Nicotinic Acetylcholine Receptors
rs1051730 Nicotinic Acetylcholine Receptors
rs1824024 Muscarinic Acetylcholine Receptors
What's relevant is that Congenital Myasthenic Syndrome is a genetic Myasthenia Gravis like disease with overlap of a number of symptoms seen in POIS. In particular, CMS and MG typically have dysfunction of the Acetylcholine Receptors.
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Demografx
low testosterone hi prolactin
I took a blood test one week after release, POIS-free.
My endocrinologist comments on my hormone test results:
"Your testosterone concentration is low and prolactin is high.
If I cannot explain it by the medications/supplements you were taking I'll
want to schedule an MRI of your pituitary gland."
Hi HOD,
Very interesting.
My endocrinologist also had me do an MRI of my pituitary gland.
Nothing serious was found (“empty sella syndrome” - - harmless/no symptoms)
Apparently it’s standard procedure.
Demo
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N-Acetyl Cysteine (NAC) is perhaps the nr-1 liver-remedy and skin problems are strongly related to liver issues. I believe the liver and the gut are the two most importand organs in the body. POIS might be improved if those organs work better.
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Try Liposomal Glutathione it works much better for me than NAC does.
[/quote
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Organic Acids test Interpretation:
High yeast/fungal metabolites (1-8) Elevations of one or more metabolites indicate a yeast/fungal overgrowth of the
gastrointestinal (GI) tract. Prescription or natural (botanical) anti-fungals, along with supplementation of high potency
multi-strain probiotics, may reduce yeast/fungal levels.
Vanillylmandelic acid (VMA) levels (34) below the mean indicate low production and/or decreased metabolism of the
neurotransmitters norepinephrine and epinephrine. Vanillylmandelic acid is a metabolite of the neurotransmitters
norepinephrine and epinephrine. Low production of VMA can be due to decreased intake or absorption of norepinephrine ’s
and epinephrine’s precursor amino acids such as phenylalanine and/or tyrosine, decreased quantities of cofactors needed
for biosynthesis of norepinephrine and epinephrine such as tetrahydrobiopterin and vitamin B6 coenzyme or decreased
amounts of cofactors such as S-adenosylmethionine (Sam-e) needed to convert norepinephrine and epinephrine to VMA.
In addition, a number of genetic variations such as single nucleotide polymorphisms (SNPs) or mutations in MAO or
COMT genes can cause reduced production of VMA. Such SNPs are available on The Great Plains DNA methylation
pathway test which can be performed on a cheek swab. VMA values below the mean but which are much lower than HVA
values are usually due to impairment of dopamine beta hydroxylase due to Clostridia metabolites, the mold metabolite
fusaric acid, pharmaceuticals such as disulfiram, or food additives like aspartame or deficiencies of cofactors such as
vitamin C or copper. Values may be decreased in patients on monoamine oxidase (MAO) inhibitors. Another cause for a
low VMA value is a genetic variation (single nucleotide polymorphism or SNP) of the DBH enzyme. This DBH test is now
available at The Great Plains Laboratory on blood serum. Patients with low VMA due to Clostridia metabolites or genetic
DBH deficiency should not be supplemented with phenylalanine, tyrosine, or L- DOPA.
High HVA/VMA ratio (35) the HVA/VMA ratio reflects the balance between dopamine and norepinephrine/epinephrine
production by catecholamine producing neurons in the central nervous system, sympathetic nervous system, and adrenal
gland. The most common reason for an elevation of the HVA/VMA ratio is a decreased conversion of dopamine to
norepinephrine. The enzyme responsible for this conversion, dopamine beta-hydroxylase (DBH), is copper and vitamin C
dependent so an elevated ratio could be due to deficiencies of these cofactors . The most common reason for this
elevated ratio is inhibition of this enzyme by Clostridia byproducts including HPHPA, 4-cresol, or 4-hydroxyphenylacetic
acid. Other causes of an increased ratio include inhibition of DBH by the mold metabolite fusaric acid, pharmaceuticals
such as disulfiram, or food additives like aspartame. Another cause for an elevated ratio is a genetic variation (single
nucleotide polymorphism or SNP) of the DBH enzyme. Alternatively, the activity of the DBH enzyme can be measured on
blood serum. Individuals with low DBH activity can be treated with the drug DroxidopaTM, which provides adequate
norepinephrine by an alternate biochemical pathway. This DBH test on blood serum is now available at The Great Plains
Laboratory. High ratios are common in a large number of neuropsychiatric diseases regardless of the reason for DBH
deficiency.
Pyridoxic acid (B6) levels below the mean (51) may be associated with less than optimum health conditions (low
intake, malabsorption, or dysbiosis). Supplementation with B6 or a multivitamin may be beneficial.
Pantothenic acid (B5) levels below the mean (52) may be associated with less than optimum health conditions.
Supplementation with B5 or a multivitamin may be beneficial.
Ascorbic acid (vitamin C) levels below the mean (54) may indicate a less than optimum level of the antioxidant vitamin
C. Individuals who consume large amounts of vitamin C can still have low values if the sample is taken 12 or more hours
after intake. Supplementation with buffered vitamin C taken 2 or 3 times a day is suggested.
High 2-hydroxyisovaleric acid and/or 2-hydroxyisocaproic acid (62,65) may be due to the genetic disease MSUD
(maple syrup urine disease) or dihydrolipoyl dehydrogenase deficiency. Individuals with slight to moderate elevations may
benefit from supplementing with thiamine.* Individuals high in all MSUD metabolites and have values that exceed 20 times
the upper limit may benefit from very high doses (5-20 mg/kg/day) of thiamine.
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I moved some post from the Test Result thread to this thread.
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Thanks Simon66 and certainlypois2! :D
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Ditto to nanna1’s thanks to Simon66 and certainlypois2
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Steroid hormones during a flare:
CORTISOL *688.000 nmol/l 133.00 - 537.00
Aldosterone SERUM/PLASMA * 2210 pmol/l 61 - 970
Flare behaviour is typical for MCAD. Serotonin, locally released by intra-adrenal mast-like cells may be responsible for the increased values above, see articles below. And since we are talking about a flare it will probably normalize again.
Role of Mast Cells in the Control of Aldosterone Secretion (https://www.thieme-connect.com/products/ejournals/html/10.1055/a-1119-1063)
Serotonin-induced stimulation of cortisol secretion from human adrenocortical tissue is mediated through activation of a serotonin4 receptor subtype (https://www.sciencedirect.com/science/article/abs/pii/0306452292900476?via%3Dihub)
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Thanks BluesBrother for contributing!
https://poiscenter.com/forums/index.php?topic=2684.msg33828#msg33828
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Response of peripheral serum sex steroids and some of their precursors to a single injection of hCG in adult men (https://sci-hub.tw/https://onlinelibrary.wiley.com/doi/abs/10.1111/j.1365-2265.1980.tb01037.x)
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Reported Prolactine levels so far:
High:
qutoz: 25 ng/ml (2.7 - 16.9)
Simon66: 638 mU/L (Range: 86 - 324)
Demografx: "Your testosterone concentration is low and prolactin is high."
Robb23: (261.59 mIU/L scale 55.97-278.36 mIU/L)
David: high prolactin? 275 mkME/ml ref(86-324)
jakov: prolactin: high source (http://www.poiscenter.net/viewtopic.php?f=11&t=1694#p15143)
Total = 6
Normal:
Jferr: 6.2 ng/mL, (2.6 - 13.1)
CertainlyPOIS: 8.4 (3-20 ng/ml)
Vandemolen: 0.29 (in 2011). RR: 0-0.32
coal: 11 (2-18ng / mL) - 7.9 (2-18ng / mL)
poisioq: elevated prolactin, then later normal 13 ng/mL [3.5 - 19.4]
fernab: Prolactine: 13.70 ng/ml
Total = 6
Overall 12 reports with a 50% rate of high Prolactine cases from this thread (https://poiscenter.com/forums/index.php?topic=2684.0).
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Low T level is correlated with inflammation, see tables 1 & 2 (open tables in new tab):
The Anti-Inflammatory Effects of Testosterone (https://academic.oup.com/jes/article/3/1/91/5137187)
"Total T and SHBG are inversely correlated with WBC. "
Reminds me of Nanna's results (https://poiscenter.com/forums/index.php?topic=2684.msg24052#msg24052)
I bet the low T found in POISers has to do with inflammation. Some inflammatory marker may be high. Perhaps you may see the same parameter elevated in all POISers with low T, something for research.
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Member poisioq - elevated prolactin(elevated prolactin could be the couse of
hypogonadism in poisers),
Hi ige , igf1....-(indicate posible parasitic infection, alergic reactions....
Intresting, member reporting that in fasting periods he get rid of pois...
That olso lead me to xoliar indicated to alergic asthma and mcas patients...
UPDATE 5#
Since my last update I had 2 blood test. In both of them prolactin resulted into the limits.
But for my last blood test my doctor requested also 2 unusal things: IGF-1 and IgE, that both came up above their normal ranges:
IgE 562,00 UI/mL (<120,00)
IGF-1 279,80 ng/mL (96,40 - 227,80)
Update #2
After 2 months on Cabergoline I had another blood test. Now prolactine is in the range: 13 ng/mL [3.5 - 19.4].
In my last 2 analysis it was 55.9 and 41.5 ng/mL.
Dairy products consumption:
https://en.wikipedia.org/wiki/Insulin-like_growth_factor_1#Possible_causes_of_elevated_IGF-1_levels
Acne, Oily skin, Diet (carbs, dairy), Androgen involvement:
Oily Skin: An Overview (https://sci-hub.se/https://www.karger.com/Article/Abstract/338978)
Over-stimulation of insulin/IGF-1 signaling by Western diet may promote diseases of civilization: lessons learnt from Laron syndrome (https://nutritionandmetabolism.biomedcentral.com/articles/10.1186/1743-7075-8-41)
Mast cells also produce IGF-1.
IGF-1 seems to be able to activate mTOR pathways. mTOR regulates mast cell activation:
https://en.wikipedia.org/wiki/Insulin-like_growth_factor_1#Mechanism_of_action
https://youtu.be/9QbZp3WcC1Q?t=3079
https://onlinelibrary.wiley.com/doi/full/10.1111/exd.13288
https://www.sciencedirect.com/science/article/abs/pii/S0301472X06003961
(https://media.springernature.com/full/springer-static/image/art%3A10.1186%2F1743-7075-8-41/MediaObjects/12986_2011_Article_340_Fig1_HTML.jpg?as=webp)
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My CD57+ count was low. Did multiple tests for Lyme but all negative. 4 or 5 people did a test for IgM and only VandeMolen had low IgM. CD57+ NK cells are basically a subset of mature CD56 NK cells. CD56 NK cells express CD57 with age (CD57 = old CD56 NK cells).
https://ashpublications.org/blood/article/116/19/3865/28027/CD57-defines-a-functionally-distinct-population-of
https://link.springer.com/article/10.1007%2Fs00262-016-1803-z
Hmm to be more specific CD57 is a CD56dimCD16+ NK-cell subset (30%-60%). Take a look at the brazilian POIS study (https://sci-hub.tw/10.1080/0092623x.2019.1677835), table 1:
"The subset analysis of NK cells showed that CD56dimCD16+ NK cells that are the most common subtype of NK cells in the PBMC in healthy individuals were diminished in the POIS patient. The POIS patient presented fewer CD56dimCD16+ NK cells in comparison to healthy individuals, but in contrast, presented more CD56-CD16+ NK cells."
With other words: The CD57+ NK cells which was low in my case is actually a subset of a subtype of NK cells seen in the brazilian case study which was low as well.
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My CD57+ count was low. Did multiple tests for Lyme but all negative.
I stumbled over this, sounded interesting:
"Most commercial tests designed to detect chronic infections are based on measuring your immune reaction?the presence of antibodies?to the invading microbe. However, one of the primary cells that get infected with Lyme spirochetes are the white blood cells themselves, which is a bit of a game-changer? because if your white blood cells are infected, they lose the ability to produce antibodies.
Hence, it is relatively common to get a negative test result. Dr. Klinghardt refers to this as ?the Lyme paradox,? because in order to diagnose Lyme disease properly with one of the accepted commercial tests, you have to first treat the Lyme disease, in order for your white blood cells to be able to mount an appropriate immune response. Only then can a lab test be used to detect the presence of Lyme disease."
"An indirect test is the CD57 test. ?CD-57? is a specific group of natural killer cells that are particularly damaged by the Lyme spirochetes. Therefore, if your numbers drop to a certain level, it is an indirect indicator that you may have Lyme disease, because the only known infection to suppress CD57 is that of Borrelia burgdorferi.
Normally, your CD57 value should be over 100. If it?s lower than that, you?re infected with Borrelia. If it?s below 60, you probably have both Borrelia and Mycoplasma, and, most likely, some other co-infections."
https://www.ppt-health.com/lyme-disease-basics/dr-klinghardt-interview/
I did not use commercial testing for Lyme. I have asked for a Mycoplasma pneumoniae test in the past for my Bell's Palsy, which is able to drive CD57+ count down as well, but this got rejected because I had no respiratory symptoms (which is not a prerequisite, you can even be asymptomatic). Could be reactivation of VZV as well.
Frequent detection of Mycoplasma pneumoniae in Bell's palsy (https://link.springer.com/article/10.1007/s00405-003-0676-x)
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https://poiscenter.com/forums/index.php?topic=2684.msg35348#msg35348
What solution did you use BoneBroth?
I have some interesting new results from a physiospect frequence analyse yesterday.
- Beginning osteoporosis. Probably because of low pH. Maybe an affect of POIS as well.
Perhaps an idea to check this again with a DXA scan.
"Premature osteopenia/osteoporosis is frequently found in mast cell disease patients and is usually diffuse but may be focal."Ref (https://www.jillcarnahan.com/downloads/MCAS-Afrin.pdf)
Small Intestinal Bacterial Overgrowth Is Common in Mast Cell Activation Syndrome (https://journals.lww.com/ajg/Fulltext/2019/10001/Small_Intestinal_Bacterial_Overgrowth_Is_Common_in.1194.aspx) (Solution: Lactulose, gases: Hydrogen+Methane)
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The solution I drank was lactulose. Hydrogen (H2) was normal 6 ppm (normal is < 12 ppm).
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The solution I drank was lactulose. Hydrogen (H2) was normal 6 ppm (normal is < 12 ppm).
Ok thanks, good to know. Could you add this detail to your post in the results thread?
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Absolutely!
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I seem to be sensitive to sugars. When I get better in POIS and fall for the temptation to eat bakery/wheat/cakes I always seem to get ballon stommach and then skin rashes (rosacea like) on my forehead and headaches + bad smelling urine, warm inflammation feeling in the body, bulging blood vessels and even some red eczema at the top of my willy. The symptoms doubles when having orgasm in the same period. When I do waterfast for some days those symptoms go away. This is a typhical SIBO-symptoms, but do you mean that malfunctional mastcells is the underlaying cause in the upper small intestine? Does anyone else share my symptoms?
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but do you mean that malfunctional mastcells is the underlaying cause in the upper small intestine?
I'm just throwing that idea around as a potential cause yes.
Do you have constipation or diarrhea?
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During the last six months I had at least two severe constipations that lasted for over a week. Had diarreha too but that was probably caused by the constipation-medicine/herbs. I've also had yellowish-grey and claylike stool (like mustard) during the same time. Tryed some bitter herbs for the liver/bile and drank 2-4 table spoons of apple cider vinaegar before breakfast and after 1-2 months the stool got dark brown again. But the rosacea-like exzema on my forehead and foggy headache is really bad now. Talked to the SIBO therapis today. We're starting a whole year SIBO plan now. She recommended a only-meat or a meat based diet (with some vegetables that are ok with SIBO), but I dont know how compatible that is with the nanna-protocol, where it is recommended vegetarian diet.
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"In conclusion, a methane positive breath test is associated with constipation as a symptom."
Methane Production During Lactulose Breath Test Is Associated with Gastrointestinal Disease Presentation (https://link.springer.com/article/10.1023/A:1021738515885)
There are more people on this board with constipation. I bet they are CH4 breathers as well.
In case of a Diarrheic Type of IBS:
"Symptoms related to the irritable bowel syndrome improved in 60% of patients treated with elimination diet and in 67% of those treated with oral cromolyn sodium (1500 mg/day) for 1 month."
Oral Cromolyn Sodium in Comparison with Elimination Diet in the Irritable Bowel Syndrome, Diarrheic Type Multicenter Study of 428 Patients (https://www.tandfonline.com/doi/abs/10.3109/00365529509089786)
I'm also interested in a study repeating this SIBO test for a group of POISers.
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During the last six months I had at least two severe constipations that lasted for over a week. Had diarreha too but that was probably caused by the constipation-medicine/herbs. I've also had yellowish-grey and claylike stool (like mustard) during the same time. Tryed some bitter herbs for the liver/bile and drank 2-4 table spoons of apple cider vinaegar before breakfast and after 1-2 months the stool got dark brown again. But the rosacea-like exzema on my forehead and foggy headache is really bad now. Talked to the SIBO therapis today. We're starting a whole year SIBO plan now. She recommended a only-meat or a meat based diet (with some vegetables that are ok with SIBO), but I dont know how compatible that is with the nanna-protocol, where it is recommended vegetarian diet.
His old protocol involved eating vegetarian. His new protocol does not require that.
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Good to hear certainlypois2! Muon: The last constipation happened two months before the SIBO test thought and since then I had no constipations. It's hard to find information on the syncronicity of the constipation and the methane release with the IBS-patients from that study. Nevertheless intreresting!
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Demografx has low Testosterone levels, POIS symptoms decrease by TRT (and benadryl+forced sleep for more improvement).
Has anyone tried norethisterone for their POIS?
Yes. Bad effect on me, stopped.
Heather has low Testosterone, low progesterone, high estrogen and responding to TRT (although results may be premature at the time of posting this, needs update).
Heather1111 (https://www.reddit.com/r/POIS/comments/hgknmc/women_with_pois/):
"They did try me on progesterone a few months back as my levels are low and it was so horrible I couldn't be on it for more than a few weeks. It made me so incredibly sleepy and made me gain some weight in that short time."
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Postorgasmic illness syndrome: випадок із практики (http://www.irbis-nbuv.gov.ua/cgi-bin/irbis_nbuv/cgiirbis_64.exe?C21COM=2&I21DBN=UJRN&P21DBN=UJRN&IMAGE_FILE_DOWNLOAD=1&Image_file_name=PDF/Msps_2013_18_4_21.pdf)
The patient is consulted by a psychoneurologist. Conclusion: asthenic syndrome.
When Googling for this word, I only find a movie as result.
However post viral asthenic syndrome is a Google recommended query for this, which plays into the POIS<->CFS direction...
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Use keywords 'asthenic syndrome medical':
"Asthenic syndrome (syndrome of chronic fatigue) is a psychopathological condition in which the patient experiences constant fatigue and apathy, difficulties with concentrating, decreased ability to work/learn, and rapid exhaustion of nervous processes"
Seems someone renamed CFS. I do think CFS stems from a pro-inflammatory cytokine going into systemic circulation.
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Here is all my recent blood work. The red lines separate different days. Nothing really stands out to me other than one day had low neutrophils and another had high sodium. Hopefully the people here smarter than me can make use of this information.
https://i.imgur.com/mJ0gZyg.jpg (https://i.imgur.com/mJ0gZyg.jpg)
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Seems fine. The only thing I noticed is borderline low neutrophils. I got no clue about cholesterol measurements and ratio's, perhaps others know more about those. Total testosterone should be measured together with free testosterone and SHBG.
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The only thing I noticed is borderline low neutrophils.
==>
Thanks Hopeoneday for finding the neutropenia correlation!
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She recommended a only-meat or a meat based diet (with some vegetables that are ok with SIBO),
See also this forum for the keyword "carnivore" or in general the internet for "carnivore diet"
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Thanks Hopeoneday for finding the neutropenia correlation!
They could be used up during an infection. https://en.wikipedia.org/wiki/Neutrophil#Degranulation
Low neutrophil count + high lactoferrin. Check wiki link.
https://poiscenter.com/forums/index.php?topic=2684.msg24765#msg24765
Problems with sugar/refined carbs in POISers, https://en.wikipedia.org/wiki/Neutrophil#Structure:
"Neutrophils have a preference to engulf refined carbohydrates[16][17][18] (from ingested glucose, fructose, sucrose, honey and orange juice[16]) over bacteria.[16] In 1973 Sanchez et al. found that the neutrophil phagocytic capacity to engulf bacteria is affected when simple sugars are digested,[16] and that fasting strengthens the neutrophils' phagocytic capacity to engulf bacteria.[16] However, the digestion of normal starches has no effect. It was concluded that the function, and not the number, of phagocytes in engulfing bacteria was altered by the ingestion of sugars.[16] In 2007 researchers at the Whitehead Institute of Biomedical Research found that given a selection of sugars, neutrophils engulf some types of sugar preferentially."
They produce reactive oxygen species (ROS) and use oxygen in the process. This could be checked in blood.
Or something might be interfering with the signaling that is related to neutrophil differentiation/granulopoiesis. I've also seen a few POISers with high monocytes. Here is the lineage:
(https://upload.wikimedia.org/wikipedia/commons/1/1f/Hematopoiesis_%28human%29_diagram_en.svg)
Current Understanding in Neutrophil Differentiation and Heterogeneity (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5662779/)
Some molecules described in the article above might show abnormal levels.
https://poiscenter.com/forums/index.php?topic=2805.msg25451#msg25451
Alpha-1-Antitrypsin, Quant
67 mg/dL (Low)
Reference Range:100 - 190
https://en.wikipedia.org/wiki/Neutrophil#Clinical_significance
Can affect neutrophil function. I've already checked elastase by the way which was normal.
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Differential effects of testosterone on circulating neutrophils, monocytes, and platelets in men: Findings from two trials (https://onlinelibrary.wiley.com/doi/abs/10.1111/andr.12834)
"Conclusions
Testosterone administration in men differentially increases neutrophil and monocyte counts. These findings, together with its erythropoietic effects, suggest that testosterone promotes the differentiation of hematopoietic progenitors into the myeloid lineage. These findings have potential mechanistic, therapeutic, and safety implications."
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Berlin1984: "symptoms 70% improved by diet (casein-free, wheat-free".
Have you done a SIBO test? Do or did you have any problems with bloating, white coatings on tounge or exzema/acne/rosacea?
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"At the age of 14-15, he began to notice a deterioration in health after masturbation. The severity and duration of symptoms were significantly less. It is possible that he began to notice more symptoms due to the appearance of a permanent partner and the beginning of employment after graduation, when he began to regularly note a decrease in efficiency. The patient has a higher education, speciality "electrical engineering and electrical technology", works in shifts at the power plant."
Muon: My POIS problems also started to develop at that time. The only thing that I can think of that differ me from others are:
- Baldness runs in family (perhaps an extra sensitivity to testosterone, Dihydrotestosterone (DHT) or 5-alpha reductase)
- Long term stress in young years (9 years span) because of school bullying and other issues
- Fairly hight suger intake because of "family baking tradition" (sugar aggrivates stress and lower testosterone/adrenal activity)
- Long term exposed to elecric field from computers and suspected brominated flame retardants in bad ventilated room around age 18+, as symptoms started to aggrivate + prolonged stress because of difficulty to keep up with school because of symptoms
Does anyone else have the same experience?
[/list]
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It started around age 15. Gradually went worse and snowballed in my late teenage years. Probably due to increased frequency of trigger exposure (including stress). My brother developed it much later in his early twenties also at a time where he increased the frequency of sports/exercise. He reacts to every food under the sun and switched to a carnivore diet which is better for him. This forum is full of engineers by the way.
Baldness you say? Prostaglandin D2 can facilitate hair loss. You could try to measure the PGD2 breakdown product 11-β-Prostaglandin-F2-alpha in 24 hour urine.
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Funny, exact the same result regarding calcium:
https://poiscenter.com/forums/index.php?topic=3202.msg34002#msg34002
https://poiscenter.com/forums/index.php?topic=2684.msg35434#msg35434
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Vitamin b12 and D are low:
https://drive.google.com/file/d/1H-Gx4YaeMJTJiiQSertvGyHSLSmZx24f/view?usp=drivesdk
Nas should do a SIBO test IMHO. He also had low iron at one point if I'm not mistaken.
Muon's brother, BDNF, tryptophan: https://poiscenter.com/forums/index.php?topic=2545.0
"Altered tryptophan metabolism also was observed in the same animals, along with significantly reduced BDNF, oxytocin and vasopressin gene expression"
"Intriguingly, other CNS alterations in GF mice also are sex-dependent; e.g., altered expression of BDNF has been documented only in male GF mice"
Stress & the gut-brain axis: Regulation by the microbiome (https://www.sciencedirect.com/science/article/pii/S2352289516300509)
"Our data support the view that measures of blood and plasma BDNF levels reflect brain-tissue BDNF levels."
Blood BDNF concentrations reflect brain-tissue BDNF levels across species (https://academic.oup.com/ijnp/article/14/3/347/905865)
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"Given the duration of symptoms in this patient, a Type III reaction may also exist, which would be evaluated with complement levels (C4, CH50) to look for consumption by immune complexes". Page A48 (https://sci-hub.tw/10.1016/j.anai.2011.09.019)
In line with Stafie's measurements: https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172
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Berlin1984: "symptoms 70% improved by diet (casein-free, wheat-free".
Have you done a SIBO test? Do or did you have any problems with bloating, white coatings on tounge or exzema/acne/rosacea?
"except for life-long atopic manifestations of bronchial asthma, allergic rhinitis and neurodermatitis". Ref (https://f1000research.com/articles/2-113)
Supplementary Table 4. Allergic and non-allergic diseases for which pathogenetic involvement of mast cells has been demonstrated or suspected. https://www.tandfonline.com/doi/suppl/10.3109/07853890.2016.1161231?scroll=top&
? allergy [ ]
? anxiety/panic disorders [ , ]
? asthma [1]
? atherosclerosis [ ]
? autism [ , ]
? autoimmune diseases [5, ]
? atopic dermatitis [ ]
? cardiac arrhythmias [ , ]
? chronic obstructive pulmonary disease [ ]
? chronic fatigue syndrome [ ]
? dysautonomia [ , ]
? eosinophilic esophagitis [ ]
? eosinophilic gastritis [ ]
? eosinophilic enteritis and colitis [15]
? fibromyalgia [ ]
? heart failure [ ]
? histamine intolerance [ ]
? hypermobility-type Ehlers Danlos Syndrome [ , , ]
? inflammatory bowel disease [ ]
? interstitial cystitis [ ]
? irritable bowel syndrome [ ]
? systemic mast cell activation disease [ ]
? migraines [ ]
? multiple sclerosis [ ]
? neurofibromatosis [ ]
? neurogenic pain [ , ]
? non-cardiac chest pain [27]
? obesity [ ]
? osteoporosis [ ]
? peritoneal adhesions [ ]
? postural orthostatic tachycardia syndrome [ ]
? psoriasis [ ]
? psychosomatism [ , , ]
? rheumatoid arthritis [ ]
? rosacea [ ]
? sarcoidosis [ ]
? vulvodynia [ ]
? tumor growth [25]
You will find many POIS cases showing at least one of the above.
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Small Intestinal Bacterial Overgrowth Is Associated with NonAlcoholic Fatty Liver Disease (https://pdfs.semanticscholar.org/dc31/1b2cdef95062d3be74f0aa85f98e114c6c70.pdf)
"In patients with NASH, SIBO has been associated with increased levels of LPS binding protein and up-regulation of the LPS ligand toll-like receptor 4 (TLR-4), which correlated with increased plasma levels of inflammatory markers such as interleukin (IL)-8 and hepatic expression of tumor necrosis factor (TNF)-alpha [16, 17]."
Fatty liver POIS case report:
https://poiscenter.com/forums/index.php?topic=2684.msg27145#msg27145
I also have diagnosed fatty liver.
Muon IL-8 (and ALT^), Bluesbrother TNF-alpha:
https://poiscenter.com/forums/index.php?topic=2301.msg35425#msg35425
Bonebroth SIBO:
https://poiscenter.com/forums/index.php?topic=2684.msg35348#msg35348
"Experimental and clinical data indicates that a depletion in NKT cells can lead to the chronic pro-inflammatory environment that can accompanies hepatic steatosis" https://www.frontiersin.org/articles/10.3389/fmicb.2018.00061/full
SIBO ---> Reduced Testosterone? (Bonebroth; low T + SIBO)
Small intestinal bacterial overgrowth (SIBO) as a potential cause of impaired spermatogenesis (https://gut.bmj.com/content/early/2020/02/17/gutjnl-2020-320766.abstract)
Vitamin D deficiency in SIBO?
SIBO in MCAS:
Small Intestinal Bacterial Overgrowth Is Common in Mast Cell Activation Syndrome (https://journals.lww.com/ajg/Abstract/2019/10001/1194_Small_Intestinal_Bacterial_Overgrowth_Is.1194.aspx)
Stress + SIBO ---> alterations in gut-brain axis --> reduced BDNF --> Premature ejaculation?
https://poiscenter.com/forums/index.php?topic=2695.msg35544#msg35544
"The patient subsequently self-started a probiotic containing Bacillus coagulans and fructooligosaccharide, which he reported improved his symptoms further" https://sci-hub.tw/10.1080/21681805.2019.1704861
https://en.wikipedia.org/wiki/Fructooligosaccharide
Garlic, banana's, apples contain prebiotics.
Prebiotics--->BDNF^ ? https://www.sciencedirect.com/science/article/pii/S2352289516300509
I have a very slow, sluggish, liver. So, I suppose that after sport, the additionnal detox my liver has to take on is responsible, at least in part, for my fatigue and symptoms. Anyway, taking great care of my liver helped me both for exercise and for POIS. You can see more details in this specific "liver detox" thread, at https://poiscenter.com/forums/index.php?topic=2431.msg20521#msg20521 (https://poiscenter.com/forums/index.php?topic=2431.msg20521#msg20521) .
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Berlin1984: "symptoms 70% improved by diet (casein-free, wheat-free".
Have you done a SIBO test? Do or did you have any problems with bloating, white coatings on tounge or exzema/acne/rosacea?
Thank you for nudging me into this direction.
I think I might have SIBO. (?) I never did a test though. (https://poiscenter.com/forums/index.php?topic=3385.0)
I ordered some oregano oil capsules and started taking them yesterday. (I also started with D-Ribose for fatigue (https://poiscenter.com/forums/index.php?topic=3390.msg35705), so that's maybe confounding).
EDIT: I also ordered Pepto Bismol (https://poiscenter.com/forums/index.php?topic=3316.0). Not so easy since it's not a licensed medicine in EU.
Bloating/Flatulence: Sure ;-)
Regarding eczema: Atopic dermatitis was corelated with POIS in the study papers (https://poiscenter.com/forums/index.php?topic=3127.msg34959#msg34959). I don't have skin problems, but sometimes quite strong itching at the "Mons pubis" area of my body. (I'm male. I don't know the correct term for that area for males)
See also my poll about constipation. (https://poiscenter.com/forums/index.php?topic=3293.0)
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Regarding eczema: Atopic dermatitis was corelated with POIS in the study papers (https://poiscenter.com/forums/index.php?topic=3127.msg34959#msg34959).
Case (https://sci-hub.se/https://doi.org/10.1111/jsm.12182_3), page 220: Atopic Dermatitis (https://poiscenter.com/forums/index.php?topic=2695.msg35589#msg35589) + Premature ejaculation (https://poiscenter.com/forums/index.php?topic=139.msg35655#msg35655)
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Nonsteroidal anti-inflammatory drugs are effective against postorgasmic illness syndrome: A case report (https://onlinelibrary.wiley.com/doi/full/10.1002/cia2.12123)
"These findings indicate that POIS could be caused by inflammatory mediators that are inhibited in the cyclooxygenase (COX) 2 pathway by the administration of these drugs."
Pro-inflammatory cytokines/chemokines are able to upregulate COX-2, they do not affect COX-1. There are indications that age-dependent decline in testosterone is mediated through COX-2 Ref (https://academic.oup.com/endo/article/146/10/4202/2499726). And since some men with low T show elevated cytokines Ref (https://academic.oup.com/jes/article/3/1/91/5137187), these cytokines might be responsible for a faster decline of testosterone as a function of time. POISers with low T may respond to COX-2 inhibitors. POISers with low T could have overlap of cytokine/chemokine profiles, the overlap consists of the ones that affect COX-2. If true, what's the cellular source of these cytokines?
Case of post-orgasmic illness syndrome associated with hypogonadism (https://onlinelibrary.wiley.com/doi/full/10.1002/iju5.12184)
"Nonsteroidal anti-inflammatory drugs were initially administered and helped relieve headache and muscle pain. Thereafter, the patient was able to ejaculate three times a week. In addition, after administering testosterone enanthate once or twice a month, his general fatigue significantly improved, and he could ejaculate every day."
The NSAIDs don't affect cytokines. Cytokines are able to induce systemic effects like fatigue, NSAIDs didn't fix his fatigue. Some cytokines can be reduced by TRT, that would have fixed his fatigue like in the example above. Also those two can interact with mast cells as well.
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Directional Mast Cell Degranulation of TNF into Blood Vessels Primes Neutrophil Extravasation (https://papers.ssrn.com/sol3/papers.cfm?abstract_id=3651507)
Leakage of neutrophils
- Low Neutrophil Count: 1.47 10e9/L (1.56-6.52)
Results from blood tests in no-POIS state:
- TNF alpha 32.6 pg/ml above reference range (<12.0)
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IL-33 can selectively trigger mast cells to secrete TNF-alpha or IL-8. (Ref (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/table/T4/))
Mast Cells as Sensors of Cell Injury through IL-33 Recognition (https://www.jimmunol.org/content/186/4/2523)
Atopic dermatitis:
IL-33: A Novel Danger Signal System in Atopic Dermatitis (https://www.sciencedirect.com/science/article/pii/S0022202X15357365)
Increased serum levels of interleukin 33 in patients with atopic dermatitis (https://www.sciencedirect.com/science/article/abs/pii/S0190962214009797)
Endothelial cells are the main source of IL-33, epithelial cells are a source as well. These cells maintain barrier functions. Barrier dysfunction, disruption, or cell damage will release IL-33. Cell damage/injury can lead to a PLA2/AA inflammatory cascade.
Interleukin-33 (IL-33): A nuclear cytokine from the IL-1 family (https://onlinelibrary.wiley.com/doi/full/10.1111/imr.12619)
Environmental factors in epithelial barrier dysfunction (https://www.sciencedirect.com/science/article/pii/S009167492030573X)
(https://onlinelibrary.wiley.com/cms/asset/9179a870-c046-4623-8fb2-dcac44a8ba63/imr12619-fig-0005-m.jpg)
Dexamethasone rapidly suppresses IL-33-stimulated mast cell function by blocking transcription factor activity (https://jlb.onlinelibrary.wiley.com/doi/full/10.1189/jlb.3A0316-125R)
Mast cells themselves can release IL-33.
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(https://ars.els-cdn.com/content/image/1-s2.0-S0022202X15357365-gr1.jpg)
Ref (https://www.sciencedirect.com/science/article/pii/S0022202X15357365)
Take a look at the Th1 cell and the B-cell below.
IFN-g, IL-8, IgG4 elevated (https://poiscenter.com/forums/index.php?topic=2545.0)
IgG4 induction probably goes via an IL-4 independent route.
IL-13, IGF-1, GH and NGF can selectively (without induction of other immunoglobulin G subclasses) induce IgG4.
Interleukin 13 induces interleukin 4-independent IgG4 and IgE synthesis and CD23 expression by human B cells. (https://www.pnas.org/content/90/8/3730.short)
Growth hormone and insulin-like growth factor I induce immunoglobulin (Ig)E and IgG4 production by human B cells. (https://rupress.org/jem/article/180/2/727/50773/Growth-hormone-and-insulin-like-growth-factor-I)
Nerve growth factor specifically induces human IgG4 production (https://onlinelibrary.wiley.com/doi/10.1002/eji.1830210121)
Process could be triggered upstream by TSLP.
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So...what is the plan :D 8) ?
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Food for thought:
Suppression of cytokine release post O instead of cytokine storms? Cytokine release need intracellular calcium. These numbers are falling and could indicate a decrease in intracellular calcium levels:
https://poiscenter.com/forums/index.php?topic=2545.msg32239#msg32239
Testosterone can actually increase intracellular calcium in various cells. TRT may stabilize IC calcium levels:
Testosterone Stimulates Intracellular Calcium Release and Mitogen-Activated Protein Kinases Via a G Protein-Coupled Receptor in Skeletal Muscle Cells (https://academic.oup.com/endo/article/144/8/3586/2502406)
Testosterone induces Ca2+ influx via non-genomic surface receptors in activated T cells (https://www.sciencedirect.com/science/article/pii/S0014579397003463)
Also my wavy muscle fasciculations/spasms post O might be a sign of lower IC calcium levels in muscle cells. Build up of pressure in my lower back post O could be an indication of problems with polarization (can lead to 1 contraction of 1 entire leg and pressure drops immediately).
https://en.wikipedia.org/wiki/Calcium_channel
https://en.wikipedia.org/wiki/Calcium_signaling
"Testosterone has a suppressive effect on immune responses and increases susceptibility to many infectious diseases [38]" Ref (https://sci-hub.se/https://www.sciencedirect.com/science/article/abs/pii/S1043276007001750)
TRT is beneficial in some POISers, would one not expect the opposite if we are dealing with an infection?
Do corticosteroids affect IC calcium levels?
So...what is the plan :D 8) ?
Find TSLP receptor inhibitors?
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Intresting , hited VDR searrch, in all founded test 5-6 poisers
hawe VDR-taq double mutation.
Vit D receptors are in corelation vith dopamine receptors.
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Hey muon,
I have been convinced for a long time that the problem of POIS is directly connected to the so-called spasmophilic (or latent tetany). I have done the EMG (electromyography) 3 times and every time I have had a positive result. Now, spasmophilia has symptoms that are very similar (if not the same) to those of POIS: tiredness, brain fog, fasciculations, eye problems, digestive problems, nausea.
Here you will find an exhaustive description of it (the wikipedia page in english is quite poor. Better in italian or in french): https://en.wikipedia.org/wiki/Tetany
https://it.wikipedia.org/wiki/Tetania
https://fr.wikipedia.org/wiki/Tétanie
In short, spasmophilia is characterized by a lack of absorption of calcium at the cellular level, resulting in neurological symptoms.
I believe that orgasm causes a spasmophilia attack in us.
I would be curious to know how many in this forum have undergone EMG and got a positive result. Or at least who have tried the signs of Chvostek and Trousseau
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Intresting , hited VDR searrch, in all founded test 5-6 poisers
hawe VDR-taq double mutation.
Vit D receptors are in corelation vith dopamine receptors.
I noticed this too. It's difficult to find good info on how this mutation can affect health though , and if it's a common mutation or not.
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Yes very intresting https://poiscenter.com/forums/index.php?action=search2
Aufff, search is afful in pois forum.... put Vdr in serch, you will notice
mutatins in ewry poiser... ( you cant put vitamine d in search,
a D letter must hawe 2 letterrs DDeeee :D)
Combinations of variations COMT and VDR Taq can lead to a wide range of dopamine levels.
Intresting , it is related to macrophages(GcMAF pathway)
wich is again part of inate imune
system wich we think can make problems in poisers.
(It si related to GcMaF) wichGcMAF which is then needed to attack stealth pathogens, viruses, and cancer cells and act trought cannabinoid pathway too.
https://mthfrgenehealth.com/vdr-gene-mutation/
I dont know how body compesate this, is this permanent mutations or
they are swiched on from some resaon in us.
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Yes very intresting https://poiscenter.com/forums/index.php?action=search2
Aufff, search is afful in pois forum.... put Vdr in serch, you will notice
mutatins in ewry poiser... ( you cant put vitamine d in search,
a D letter must hawe 2 letterrs DDeeee :D)
Combinations of variations COMT and VDR Taq can lead to a wide range of dopamine levels.
Intresting , it is related to macrophages(GcMAF pathway)
wich is again part of inate imune
system wich we think can make problems in poisers.
(It si related to GcMaF) wichGcMAF which is then needed to attack stealth pathogens, viruses, and cancer cells and act trought cannabinoid pathway too.
https://mthfrgenehealth.com/vdr-gene-mutation/
I dont know how body compesate this, is this permanent mutations or
they are swiched on from some resaon in us.
A user on Reddit said he got POIS after tick-borne illness, it disappeared in January, came back June 3x stronger. Gene mutation might make a virus stay hidden in POISers and cause symptoms.
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This is a good web page about the VDR Taq mutation.
https://selfdecode.com/gene/vdr/#fixes-advanced (https://selfdecode.com/gene/vdr/#fixes-advanced)
A user on reddit is reporting good success with Vitamin D supplementation.
https://www.reddit.com/r/POIS/comments/iehwhe/update_pois_cured?sort=confidence (https://www.reddit.com/r/POIS/comments/iehwhe/update_pois_cured?sort=confidence)
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Hey muon,
I have been convinced for a long time that the problem of POIS is directly connected to the so-called spasmophilic (or latent tetany). I have done the EMG (electromyography) 3 times and every time I have had a positive result.
Do you have lower back problems, in particular the spine?
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However, stress (sleep deprivation, emotional stress, injury, extreme temperatures) induced illness has been known and shown to be real for a long time and is described even in ancient medicine. Basically, when people become stressed out, they also become sick. Stress-induced illness is caused by a reactivation of latent infections (viral, bacterial and fungal) in the body. Our immune system is always working to suppress latent infections and fight off new infections. It was only recently discovered that epinephrine and norepinephrine trigger stress-induced illness when the immune system is compromised and cannot suppress latent infections. Many viruses and several bacteria will increase replication during stress (including HSV-1, HSV-2, VZV, EBV, CMV, etc...). So far this option (stress-induce illness) is consistent with all of the current POISer data and has not been ruled out by anyone's test. But we need more data from POISers to show statistical significance.
nanna1, What if an orgasm is already "stress" due to Norepinephrine release (https://pubmed.ncbi.nlm.nih.gov/12697037/)?
This is what I mean in this thread: https://poiscenter.com/forums/index.php?topic=2885.msg36156#msg36156
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Targeting IL-33 in Autoimmunity and Inflammation (https://jpet.aspetjournals.org/content/354/1/24?ijkey=2fd9ca318722d6e0ea0e574a824319574f6ad339&keytype2=tf_ipsecsha)
"Despite IL-33 sharing the IL-1 receptor accessory protein with other members of the IL-1 family that are known to upregulate an inducible antimicrobial peptide human b-defensin 2 (hBD2), IL-33 downregulates serum-induced hBD2 in human primary keratinocytes; this finding may explain the increased colonization rate of Staphylococcus aureus seen in atopic dermatitis (AD) patients (Alase et al., 2012). Interestingly, hBD2 has been reported to activate human MCs (Subramanian et al., 2013)."
POISer with fecal hBD2 (https://poiscenter.com/forums/index.php?topic=146.msg31902#msg31902)
POISer with S. Aureus (https://poiscenter.com/forums/index.php?topic=3423.0)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/table/T4/
POISers with IL-8 (https://poiscenter.com/forums/index.php?topic=2545.0)
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I'm going to get my blood drawn tomorrow, I have the form for the blood tests I was meant to go months ago but I'm going to just tick the ones that I want to do even though I'm not supposed to. The drs refuse to test me for pretty much anything.
Are there any tests worth it out of these that I should add
https://www.evelinalondon.nhs.uk/resources/our-services/hospital/neonatology/routine-blood-orders.pdf options
Already have ticked: Cholesterol, Crp, Thyroid Profile, Prolactin, testosterone, PSA, HCG, Ferritin, Folate, b12, vitamin d, lymphocyte sub sets and I have written homocysteine t3 and total testosterone
The doctor originally only wanted me to get tested for FBC, Paul Bunnell EBV, CRP - I scribbled out the Paul Bunnell EBV and FBC as I've had these tests a few times, I might also scribble at CRP as it seems useless for me.
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Estrogens, Progesterone, Testosterone, Total, Serum, Follicle-stimulating Hormone (FSH) & Luteinizing Hormone (LH), SHBG
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nanna1, What if an orgasm is already "stress" due to Norepinephrine release (https://pubmed.ncbi.nlm.nih.gov/12697037/)?
This is what I mean in this thread: https://poiscenter.com/forums/index.php?topic=2885.msg36156#msg36156
Yeah, probably an autonomic stress response.
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I have primary POIS, 20 years old
TSH 2,1 uUI/mL
TPO Antibodies 4,70 AU/mL
Tyreoglobulin Antibodies 0,80 AU/mL
Prolactin 2,3 ng/mL
Testosteron 370 dL/mL
My TSH same, T was 475ng/dl
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I have primary POIS, 20 years old
TSH 2,1 uUI/mL
TPO Antibodies 4,70 AU/mL
Tyreoglobulin Antibodies 0,80 AU/mL
Prolactin 2,3 ng/mL
Testosteron 370 dL/mL
https://www.mayocliniclabs.com/test-catalog/Clinical+and+Interpretive/85670
Males:
<18 years: not established
> or =18 years: 4.0-15.2 ng/mL
The post-orgasmic prolactin increase following intercourse is greater than following masturbation and suggests greater satiety (https://sci-hub.se/10.1016/j.biopsycho.2005.06.008)
A potential explanation why a subset of POISers may experience less symptoms following intercourse compared to post-masturbation? Also dopamine inhibits release of prolactin. Dopamine levels may be elevated. I also wonder whether the amount of prolactin release depends on the intensity of orgasm.
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I have primary POIS, 20 years old
TSH 2,1 uUI/mL
TPO Antibodies 4,70 AU/mL
Tyreoglobulin Antibodies 0,80 AU/mL
Prolactin 2,3 ng/mL
Testosteron 370 dL/mL
My TSH same, T was 475ng/dl
There's a paper with someone having the same T .Are you by any stretch of the imagination that guy?
https://www.researchgate.net/publication/342608657_Case_of_post-orgasmic_illness_syndrome_associated_with_hypogonadism
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Anyone else had a MRI of the spine? Me and my brother have problems with the spine (my brother thinks of elevated inflammatory molecules in cerebrospinal fluid, I think it's MCA-related considering triggers).
5.- Magnetic Resonance Imaging of the entire spine(June 2018):
multiple focal lesions were observed in the dorsal and lumbar spine, hyperintense in T2 and most of them isointense in T1, although the larger lesions have a trabecular structure suggesting that they are hemangiomas. However, given that the signal characteristics in the T1 sequence are not typical of hemangioma, it is recommended to do image control to assess evolution.
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Four years results from QRMA (quantum magnetic resonance analyzer) year 2013, 2017, 2018, 2020 (last week). There are 3 levels of severity (blue, yellow and red, where red is most severe). The vales below were almost all on the yellow level.
It sounds as good overall state scan for all wanting to improve. I like how it shows many data, good tool for biohackers. What other similar body state checks are?
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Anyone else had a MRI of the spine? Me and my brother have problems with the spine (my brother thinks of elevated inflammatory molecules in cerebrospinal fluid, I think it's MCA-related considering triggers).
I have had an MRI, and it confirmed a minor case of Scoliosis. Personally I think in my case it's down to an asymmetrical tension/tightness in my right psoas major and hamstring. My muscle tightness and tenderness seems to be tied to POIS. Whenever I release tension via exercise, stretching or yoga holds, it soon returns in the same places.
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I have had an MRI, and it confirmed a minor case of Scoliosis.
https://poiscenter.com/forums/index.php?topic=3144.0
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The last two QRMA-tests I have done 2018 and 2020 (a week ago) showed significant deficiencies in nutrients that are involved in blood vessel health: magnesium, copper, silicon, vitamin C, Q10, Vitamin B3 (niacine), vitamin B2 (B2 is reformed to B3 when B3 is low), Vitamin K and the amino acid Lysine.
Consequently I had low values on:
Blood Viscosity
Vascular Resistance
Vascular Elasticity
Coronary Artery Elasticity
Skin Collagen
Either you are sceptical about the results from frequence analysis or not, the results make perfectly sense to me because I have significant varicose veins on my legs and feets, blood pooling redness on the skin, acne, dry skin and easy to get bruise. On POIS wrinkles show up that were not there before.
Since one week ago I have added those nutrients to my SIBO/FODMAP protocol and hope to see improvements but that migh take months. I suspect that I might have bad absorption capability in the small intestine (a hair analysis confirmed this) since I have SIBO.
I also have bough a step-meter and trying to make 10 000 steps each day, but when having POIS I get pain in all muscles involved in exercise (achilles tendon/tights).
But I need to excercise and drink lots of water - otherwise the blood seems to be pooling and symptoms get worse.
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Hi BoneBroth,
How did you test for human papillomavirus (HPV)? Do you have the details for this test?
- Viruses 20,954 (papillomavirus, adenoviruses)
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Hi BoneBroth,
How did you test for human papillomavirus (HPV)? Do you have the details for this test?
- Viruses 20,954 (papillomavirus, adenoviruses)
The papillomavirus / adenovirus was confirmed with a BICOM BodyCheck2 machine. Attaching the section on that from the report. The hight values of the viruses was a bit surprising to the terapeut. I wonder if this has to do with my dermatitis like symptoms in my forehead and how to get it confirmed with other methods.
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It's count of viruses?
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I match most symptoms of this POISer (https://translate.google.com/translate?hl=en&sl=uk&u=http://www.irbis-nbuv.gov.ua/cgi-bin/irbis_nbuv/cgiirbis_64.exe%3FC21COM%3D2%26I21DBN%3DUJRN%26P21DBN%3DUJRN%26IMAGE_FILE_DOWNLOAD%3D1%26Image_file_name%3DPDF/Msps_2013_18_4_21.pdf&prev=search&pto=aue) and are from post-ussr state too (Latvia), I wonder if Eastern European POISers are more cognitive, eartly-onset types? Maybe some environment factor makes 1 POIS type more likely to be in places. His TSH is similar to mine.
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In the last case published by Nanna1 "POSTORGASMIC ILLNESS SYNDROME: A CASE FROM PRACTICE (2013)" (in Medical Tests Results) the person has many hormones in the lower intervall:
Luteinizing hormone: 3,1 (1,7-8,6) (stimulates testosterone in testicles)
FSH: 3,8 (1,8-12,4) (sperm stimulating)
Total testosterone: 10,64 (8,69-29) (anti-inflammatory, anabolic)
Free androgen index: 45,08 (33,8-106)
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In the last case published by Nanna1 "POSTORGASMIC ILLNESS SYNDROME: A CASE FROM PRACTICE (2013)" (in Medical Tests Results) the person has many hormones in the lower intervall:
Luteinizing hormone: 3,1 (1,7-8,6) (stimulates testosterone in testicles)
FSH: 3,8 (1,8-12,4) (sperm stimulating)
Total testosterone: 10,64 (8,69-29) (anti-inflammatory, anabolic)
Free androgen index: 45,08 (33,8-106)
Afair LH, FSH (pituitary hormones) don't need to be high if T is ok, low pituitary hormones but high T means balls are responsive to LH so it doesn't need to be produced a lot, high pituitary, low T mean problem with balls so pituitary compensates, while in lower range, T is there so it mean the person produces it but not as high as it could be for some reason. It could be toxin, virus, inflammation, etc. depresses full T output and might be linked to POIS.
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Do you have lower back problems, in particular the spine?
[/quote]
no, no such problems
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Member Iwillbeatthis reported today this:
"Homocysteine Result: 12.4 Ranges: 0.2-15 - Still high and indicates methylation defect" I guess that is μmol/L (μM).
In a study from 2015 researches concluded that serum homocysteine levels is positively associated with the severity of primary chronic venous disease and therefore could play a role in promoting chronic venous disease complications. Median (interquartile range) serum homocysteine concentrations in those patients were 9.10 μM (7.55-10.75) and 10.40 μM (8.85-13.10) in patients with primary chronic venous disease classified by C1-3 (n = 209) and C4-6 (n = 73) grades, respectively
https://pubmed.ncbi.nlm.nih.gov/26091687/ (https://pubmed.ncbi.nlm.nih.gov/26091687/)
Homocysteine is believed to cause the blood vessels to dilate and I have varicose veins (specially after POIS) , thats probably part of whats causing the headache as well.
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Member Iwillbeatthis reported today this:
"Homocysteine Result: 12.4 Ranges: 0.2-15 - Still high and indicates methylation defect" I guess that is ?mol/L (?M).
In a study from 2015 researches concluded that serum homocysteine levels is positively associated with the severity of primary chronic venous disease and therefore could play a role in promoting chronic venous disease complications. Median (interquartile range) serum homocysteine concentrations in those patients were 9.10 ?M (7.55-10.75) and 10.40 ?M (8.85-13.10) in patients with primary chronic venous disease classified by C1-3 (n = 209) and C4-6 (n = 73) grades, respectively
https://pubmed.ncbi.nlm.nih.gov/26091687/ (https://pubmed.ncbi.nlm.nih.gov/26091687/)
Homocysteine is believed to cause the blood vessels to dilate and I have varicose veins (specially after POIS) , thats probably part of whats causing the headache as well.
What could be causing it?
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Member Iwillbeatthis reported today this:
"Homocysteine Result: 12.4 Ranges: 0.2-15 - Still high and indicates methylation defect" I guess that is ?mol/L (?M).
In a study from 2015 researches concluded that serum homocysteine levels is positively associated with the severity of primary chronic venous disease and therefore could play a role in promoting chronic venous disease complications. Median (interquartile range) serum homocysteine concentrations in those patients were 9.10 ?M (7.55-10.75) and 10.40 ?M (8.85-13.10) in patients with primary chronic venous disease classified by C1-3 (n = 209) and C4-6 (n = 73) grades, respectively
https://pubmed.ncbi.nlm.nih.gov/26091687/ (https://pubmed.ncbi.nlm.nih.gov/26091687/)
Homocysteine is believed to cause the blood vessels to dilate and I have varicose veins (specially after POIS) , thats probably part of whats causing the headache as well.
What could be causing it?
I have a folate deficiency, I'm very sensitive to folinic acid and methyl folate can trigger brain fog reaction,I'm also very sensitive to brocoli, I am unsure whether to take folic acid as I have heard bad things about it that it binds to folate receptors and lowers natural killer cells
Unmetabolized Folic Acid: It’s Harmful
Here are the reasons why unmetabolized folic acid is harmful:
Has no physiological benefit to the host until it is converted into dihydrofolate
Folate transport proteins bind it preferentially over more reduced active folate
Folate receptors bind it preferentially over more reduced active folate
Contributes to a pseudo MTHFR deficiency due to enzymatic inhibition of MTHFR
Reduces DHFR enzymatic function which reduces biopterin recycling, thereby contributing to a biopterin deficiency
Masks a vitamin B12 deficiency
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https://rarediseases.org/rare-diseases/cerebral-folate-deficiency/ is this possible in my case?
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https://rarediseases.org/rare-diseases/cerebral-folate-deficiency/ is this possible in my case?
Fix you're vitamin B9 deficiency and if it helps then yes it does relate to your condition.
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Does eny one had been diagnosed with ataxia (from b12 angle for exemple)?
A sign of a number of neurological disorders, ataxia can cause:
I hawe those symptomes, like mystenia gravis, agravated in pois:
Ataxia symptomes:
Poor coordination.
Unsteady walk and a tendency to stumble.
Difficulty with fine motor tasks, such as eating, writing or buttoning a shirt.
Change in speech.
Involuntary back-and-forth eye movements (nystagmus)
Difficulty swallowing.
Enyone diagnosed with b12-b9 hidden anemia?
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Does enyone of poisers has been diagnosed with
myelin basic protein antibody (MBP)???
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I am pretty annoyed I saw a rheumatoligst 3 years ago and she gave me some tests to give to my gp to get done and now I have just realised he missed the antiphospholipid antibody syndrome tests(the other two tests she suggested ENA and ANA were both positive), I have had livedo reticularis on my feet and palms and also have red patched in my the corner of my eyes and these are both signs antiphospholipid syndrome. I also function a lot better when supplementing with phospholipids speech improves less brain fog etc.
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Trying to fix my folate deficiency I had the worst allergic reaction of my life last night to guess what: folic acid 5mg, I was covered head to toe in itchy red rashes unraised, I've never had rashes so bad.
I have now found out Folic acid is a histamine liberator but I don't react like this to other histamine liberators, I await my ancestry dna test results and will get a methylation panel test done as well. Methyl folate and folinic acid both give me brain fog but no rashes maybe folate autoantibodies need to be investigated.
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Trying to fix my folate deficiency I had the worst allergic reaction of my life last night to guess what: folic acid 5mg, I was covered head to toe in itchy red rashes unraised, I've never had rashes so bad.
Recognition and Management of Medication Excipient Reactivity in Patients With Mast Cell Activation Syndrome (http://sci-hub.se/10.1016/j.amjms.2019.03.005)
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Trying to fix my folate deficiency I had the worst allergic reaction of my life last night to guess what: folic acid 5mg, I was covered head to toe in itchy red rashes unraised, I've never had rashes so bad.
Recognition and Management of Medication Excipient Reactivity in Patients With Mast Cell Activation Syndrome (http://sci-hub.se/10.1016/j.amjms.2019.03.005)
Thanks btw I emailed that Dr ********(you know who) but no reply
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btw I emailed that Dr ********(you know who) but no reply
Email him once again and wait for at least a week. If you still don't get an answer then he is probably too busy. There is nothing I can do about that.
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Does eny one had been diagnosed with ataxia (from b12 angle for exemple)?
A sign of a number of neurological disorders, ataxia can cause:
I hawe those symptomes, like mystenia gravis, agravated in pois:
Ataxia symptomes:
Poor coordination.
Unsteady walk and a tendency to stumble.
Difficulty with fine motor tasks, such as eating, writing or buttoning a shirt.
Change in speech.
Involuntary back-and-forth eye movements (nystagmus)
Difficulty swallowing.
Enyone diagnosed with b12-b9 hidden anemia?
I get most of these symptoms in POIS-coordination isn't poor but clumsier, reflexes slower, feeling some sort of stiffness that makes it my posture/movements stiff robotic like or I feel so and my handwriting gets worse I think and fine motor tasks bit clumsier and speech change is big pois symptom-it's lower and feel as muscle involved in it is looser/tighter I feel as eyes aren't as focused and tend to move around even if made to look at 1 point in POIS-sometimes when I edged in fasted state for hours when eating swallowing first was harder as muscles felt tighter once I ate they got used to it-if edging when I've eaten I haven't had it. When younger my fine motor skills were area I wasn't as good at while I was very good at other areas-like maths/memory/overall academic performance that is before POIS began. I felt aversion to trying out new motor task related skills-I did go out alot and liked walking and being out with friends but sports and many motor/technical stuff seemed complex to understand for me although it was maybe my perception of it had I tried them and been instructed I might've understood them idk-I learned to ride bicycle at 11 and learned to tie shoes bit later than peers but as I said in other areas I had above average skills-for example I learned how to spell words fully rather than by pieces faster than others and in general was quick witted/fast thinker-it was motor stuff that I felt averse to and it might've been maybe as I perceived it hard when thinking of it-e.g. shoe tieing looked hard for me but once I was shown how to and did it repetitively I learned it in week and perfected soon-I sometimes think if I had/have some light Aspergers due to some traits I had/have but at late teens I became less socially awkward/better at motor stuff/less sensitive to specific tastes-younger many tastes felt very intense and I liked stuff that was moderate in taste or specific taste I liked-prefered salty/protein/sweet foods while disliked sour/bitter/acidic tastes. In POIS I get most of symptoms u listed.
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Information about the MAO-A gene variants: https://selfhacked.com/blog/about-mao-a-and-what-to-do-if-you-have-the-warrior-gene/
Mao-A R297R is found in the test made by Iwillbeatthis: https://poiscenter.com/forums/index.php?topic=2684.msg37288#msg37288
And by berlin1984: https://poiscenter.com/forums/index.php?topic=2684.msg35820#msg35820
Mao-A R297R (TT) is a low activity gene; it doesn't metabolize neurotransmitters and causes high levels. I have no idea if it corelates with POIS but maybe fixing this issue should tell us if it is related or not.
Does anyone have this variant as well?
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Anyone else had a MRI of the spine? Me and my brother have problems with the spine (my brother thinks of elevated inflammatory molecules in cerebrospinal fluid, I think it's MCA-related considering triggers).
I have had an MRI, and it confirmed a minor case of Scoliosis. Personally I think in my case it's down to an asymmetrical tension/tightness in my right psoas major and hamstring. My muscle tightness and tenderness seems to be tied to POIS. Whenever I release tension via exercise, stretching or yoga holds, it soon returns in the same places.
I also have a scoliosis bend.
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I also have a scoliosis bend.
Skeletal abnormalities poll (https://poiscenter.com/forums/index.php?topic=3144.0)
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Got an naprapat analysis/treatment today. He didn't find any skelletal deformations and said nothing was wrong. Some hours later I perhaps felt a little more relaxed and less headache, but I cant say for sure that was the cause.
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Prospero in Medical Test results: "First wave of blood and urinary tests. Probably the most interesting anomaly is the presence of Anti-nuclear antibodies, of the ENA kind, which may be indicative of an auto-immune condition.". Thats one of the signs Lupus (auto-immune disease) and POIS'ers have many Lupus symptoms (mostly during POIS). Yes I believe there is a auto-immune factor in POIS:
Dry eyes
Dry mouth
Red skin
Hair loss
Uneasiness, or pain
Muscle pain
Fatigue
Weight loss
Difficulties to speak/formulate
Brainfog
Sensitive skin to light
Poor circulation in fingers and toes
Memory loss
Inflammation of blood vessels in the skin
"Your going to see increadibly results, I've seen patients improve 100%", says Dr Axe and here is the Lupus protocol focusing on leaky gut:
https://www.youtube.com/watch?v=uOFDmJWWI_c
Lupus descrription:
https://en.wikipedia.org/wiki/Lupus
https://www.webmd.com/lupus/understanding-lupus-symptoms
https://www.verywellhealth.com/when-lymphoma-develops-in-people-with-lupus-4137791
https://www.peacehealth.org/medical-topics/id/hw123404
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Probably the most interesting anomaly is the presence of Anti-nuclear antibodies, of the ENA kind, which may be indicative of an auto-immune condition.
https://en.wikipedia.org/wiki/Extractable_nuclear_antigen
"Autoantibodies to these antigens are associated with particular connective tissue disorders."
https://en.wikipedia.org/wiki/Connective_tissue_disease
https://en.wikipedia.org/wiki/Autoantibody#List_of_some_autoantibodies_and_commonly_associated_diseases
Saw this paper about autoantibodies in CFS/ME. One could look for a paper that lists all autoantibodies. Also a separate thread can be made collecting all the autoantibody results from the forum. Table 1, autoantibodies against neurotransmitter receptors....:
https://www.sciencedirect.com/science/article/pii/S1568997218300880
This one is quite useful: https://en.wikipedia.org/wiki/Reference_ranges_for_blood_tests
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Probably the most interesting anomaly is the presence of Anti-nuclear antibodies, of the ENA kind, which may be indicative of an auto-immune condition.
https://en.wikipedia.org/wiki/Extractable_nuclear_antigen
"Autoantibodies to these antigens are associated with particular connective tissue disorders."
https://en.wikipedia.org/wiki/Connective_tissue_disease
https://en.wikipedia.org/wiki/Autoantibody#List_of_some_autoantibodies_and_commonly_associated_diseases
Saw this paper about autoantibodies in CFS/ME. One could look for a paper that lists all autoantibodies. Also a separate thread can be made collecting all the autoantibody results from the forum. Table 1, autoantibodies against neurotransmitter receptors....:
https://www.sciencedirect.com/science/article/pii/S1568997218300880
This one is quite useful: https://en.wikipedia.org/wiki/Reference_ranges_for_blood_tests
Here is what the rheumatologist said to my gp when I saw them three and a half years ago: "Tests show he is ANA positve with a titre of 1/640 and speckled staining with positive ENA for anti-Sm/RNP but negative serology for Sm and U1RNP. Other blood tests are unremarkable including normal ESR and CRP. Examination showed he had hyper-mobility of two fingers and knees. He had a prominent lumbar lordosis. He had myofascial trigger points at the trapezius and rhomboids but not more widely. He did not have peripheral features of a connective tissue disease or vasculitis"
She asked to have C3,C4 immunoglobins and anti phospholipid antibody tested and MRI of spine- the C3, C4 immunoglobins came back normal but they missed out the anti phospholipid antibodies - I realised this a few months ago. Anyway now I've tested for anti phospholipid antibodies and they've come back elevated (I knew they would) so they want me to retest in three months but they only diagnose APS if come back elevated in three months time. So it makes sense why phospholipid supplements and asprin help me and I am sure I have had some kind of mini stroke (transient ischaemic attack) on a handful of occasions which all felt extremely serious.
Its interesting that you say IGG4 masks IGE, IGG4 and IGG1 I am going to get tested for soon as advised by my current specialist but it looks like I will have to pay for them as my NHS GP won't order any of the 10 tests he has advised....
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You talked about Antiphospholipid syndrome earlier. I've read about it in a MCAS paper but couldn't remember where, until now. Table 1--->Genitourinary--->miscarriages should prompt consideration of antiphospholipid antibody syndrome potentially due to MCAS.
https://www.tandfonline.com/doi/figure/10.3109/07853890.2016.1161231?scroll=top&needAccess=true
My mother had an idiopathic miscarriage. She can touch her toes from standing position but is stiff as hell in other positions. She has problems with what I suspect is vascular inflammation. My grandma had transient ischaemic attacks.
Edit: Most IgG4 tests are deficiency tests. You need testing that can measure above the upper normal limit. Although my IgG4 might stem from SCIT or from chronic antigen exposure and could act as a protective antibody. I haven't seen others on the forum with elevated IgG4.
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Thanks yeah I mentioned it before but I only heard about the results this week. My mother also had a miscarriage however I'm not sure what type.
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My mother also had a miscarriage however I'm not sure what type.
WTF!
You may want to set up a thread for yourself here: https://poiscenter.com/forums/index.php?board=12.0
So you can document your case. I can't get an overview of people's cases here on this forum. Everything is fragmented. I encourage more people to make a case description/documentation. This isn't working guys and galls when everyone is scattering their snippets of personal info over multiple threads.
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I guess "Personal POIS Summaries and Histories." is the place you mean? (personal experiences of POIS)?
https://poiscenter.com/forums/index.php?topic=81.0
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My mother also had a miscarriage however I'm not sure what type.
WTF!
You may want to set up a thread for yourself here: https://poiscenter.com/forums/index.php?board=12.0
So you can document your case. I can't get an overview of people's cases here on this forum. Everything is fragmented. I encourage more people to make a case description/documentation. This isn't working guys and galls when everyone is scattering their snippets of personal info over multiple threads.
Whats the significance of a miscarriage? They are fairly common occurring in 1/8 pregnancies, I know that folate issues can be a cause.
I don't think I have enough abnormal tests to write a case right now only things that stand out are ENA, ANA and folate deficiency, I have only been able to have done most of the basic tests but hardly any specialised immune ones.
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I guess "Personal POIS Summaries and Histories." is the place you mean? (personal experiences of POIS)?
https://poiscenter.com/forums/index.php?topic=81.0
No. People can create a separate thread in the category 'livestyle diaries and pois summaries'. I would put your username in the title like I did with Muon's case. You may want to reserve a few comments in case of expanding the thread (buffer). You could link the thread to your signature like I did at the bottom of this comment.
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Probably the most interesting anomaly is the presence of Anti-nuclear antibodies, of the ENA kind, which may be indicative of an auto-immune condition.
https://en.wikipedia.org/wiki/Extractable_nuclear_antigen
"Autoantibodies to these antigens are associated with particular connective tissue disorders."
https://en.wikipedia.org/wiki/Connective_tissue_disease
https://en.wikipedia.org/wiki/Autoantibody#List_of_some_autoantibodies_and_commonly_associated_diseases
Saw this paper about autoantibodies in CFS/ME. One could look for a paper that lists all autoantibodies. Also a separate thread can be made collecting all the autoantibody results from the forum. Table 1, autoantibodies against neurotransmitter receptors....:
https://www.sciencedirect.com/science/article/pii/S1568997218300880
This one is quite useful: https://en.wikipedia.org/wiki/Reference_ranges_for_blood_tests
Among the different connective tissue diseases, scleroderma especially rang a bell. It seems to be one of the least understood. There are many symptoms identical to those of POIS, and the pathogenesis is surprizingly similar to many things which have been discussed for POIS. (It is also said that pulmonary complications are the main cause of lethality with this disease. Remember the poor Aswinpras06 with his very serious (lethal?) pulmonary problems?)
https://en.wikipedia.org/wiki/Scleroderma (https://en.wikipedia.org/wiki/Scleroderma)
By the way, very interesting article on ME/CFS and auto-immunity.
I'll try to write a personal thread, I already did it in French for my doctor so I'll just have to translate it.
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Pois inflamatory (vagus nerve) cascade could and i feel that make this
condition much worse , my digestion indigestion etc... :
Cervical spine instability as a cause of your digestive disorders
https://www.caringmedical.com/prolotherapy-news/gerd-neck/
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I think it would be a good idea for more people in here to get tested for phospholipid antibodies especially if they are having speech issues and livedo reticularis rash on their palms and feet. So then you can see if you have antiphospholipid syndrome or not. - My antibodies were elevated
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I think it would be a good idea for more people in here to get tested for phospholipid antibodies especially if they are having speech issues and livedo reticularis rash on their palms and feet. So then you can see if you have antiphospholipid syndrome or not. - My antibodies were elevated
What racial group do you belong to and have you been tested for these genetic markers? https://en.wikipedia.org/wiki/Antiphospholipid_syndrome#Risk_factors
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Lol I misread that a first thinking you said "radical group". I'm 100% white/caucasian , I haven't been tested for those genetic markers. Only thing I'm worried about is that the epa supplementation is going to lower the phospholipid antibodies back to nomral on my second test 3 months after, which is required for APS diagnosis. However I was supposed have this test nearly four years ago but didn't and even after nearly four years they were elevated still so I think thats enough proof....
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I've just found out now that vitamin k makes APS worse and vitamin d with k2 spray gives me brain fog speech issues, and broccoli, kale don't make me feel good either. Now I see yoghurt is also high in vitamin k this also makes me feel bad but I originally thought that was to do with the histamine.
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I wonder if and in what way mast cells are able to induce antiphospholipid syndrome. You could look that up in literature.
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"A 100-person 2015 study found APS antibodies in 7% of POTS patients while Schofield’s 38-person 2018 study found that 76% of participants in a retrospective IVIG trial in autoimmune dysautonomia (many of whom had POTS) had APS antibodies."
Muon I think you should test for APS if you can
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Any links?
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https://www.healthrising.org/blog/2018/08/15/sticky-blood-antiphospholipid-syndrome-pots-chronic-fatigue-syndrome-and-fibromyalgia/ saw it here
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"Berg, who ran Hemex Labs, believed an infection was triggering - or had triggered - antibodies, which ultimately produced the thickened or sticky blood which was clogging up the small capillaries in the body."
Mine is thick too, when ever I make a blood test it's always extremely black, thick and hard to draw.
Click on quote title for thread.
"If you suffer from migraines and cold hands, he suggested that you may have APS. If you have APS, it’s likely you have another autoimmune disease as well."
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I feel the phospholipid layer in our cells may be compromised, which limits energy production in the cells and inter cellular interactions. This may also be affecting neurological communications.
____________
POIS and CFS sudden simultaneous onset since 1993.
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Trying pure encapsulations alpha-GPC an advanced delivery form for phosphatidylcholine to increase acethylcholine. It is a big help in 3 non POIS days so far. I am in my fourth day. And day 1 after O.
I also take immunocal which is a very special whey protein which affects neurotransmitters and a powerful antioxidant. I is also a powerful lactic acid scavenger. It gives me lots of energy. Can get that at amazon.com about $80 for 30 packs (a month supply for me)
My mind is so much clearer and anxiety is almost gone with the combo. Immunocal alone helps (taken it since 2000), but the mental clarity and peace comes from the phosphatidylcholine. Immunocal tends to increase inflammation some...
Today is day one after O. Much, much better. The social anxiety, concentration, inability to deal with stressful situations is almost gone! I need to take about 3 pills a day spaced out to keep levels up throughout the day. Still tired some, but so much better. The feeling that the brain is on fire (I believe due to inflammation) is mostly gone. I feel so much better and I am very optimistic about our future. I feel the phospholipid layer in our cells may be compromised, which limits energy production in the cells and inter cellular interactions. This may also be affecting neurological communications.
I believe that as I continue to use it everyday my body will slowly recover completely in time. The alpha-GPC has made a phenomenal difference in just 4 days. I buy it from www.purecaps.com.
It is pricy, but sign up a "health practitioner" and they give a 50% discount if you sign up as such. So it is about $20 bucks for 60 caps.
You might want to save money that way too. Heck I practiced on my self for 23 years! LOL
I will also try phosphatidylserine which also increases acethylcholine and see what happens.
____________
POIS and CFS sudden simultaneous onset since 1993.
Dr. J. A. Goldstein already spoke about POIS-like symptoms in CFS/Fibro patients during the 90's. He considered most of these (IBS included) as neural network disorders, as in, body/brain miscommunication. He treated his patients with the aim to kick the brain back to where it belongs. He used hormonal therapies as well (even when hormonal levels were normal) to target the CNS. A medical doctor treating POIS (or CFS/fibro) patients should take a serious look at his work. Send me a personal message when you are interested in his book. https://poiscenter.com/forums/index.php?topic=3551.msg38066#msg38066
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I dug through the old findings and found that I was diagnosed with:
Initial despodilosis of marginal bulge, flattened lordosis of cervical spine.
This was when I was 27.
It usually occurs in older people.
In people prone to arthritis.
My CFS does not contribute to the spine.
Cervical spine instability as a cause of your digestive disorders
https://www.caringmedical.com/prolotherapy-news/gerd-neck/
It means that edge points can also damage
press on the nerves, and thereby damage the vagal nerves and other nerves.
This would mean that this could be one of the causes with the gut.
Pinched nerves can release calcitonin gene-related peptide (CGRP) and substance P (SP).
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Some people posted their genetic profile for methylation and detox according to 23andme and Genetic Genie. Here is mine.
Your SOD2 is homozygous like mine is, your VDR Taq is homozygous - the same as me and everyone else in this forum who have posted results
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Some people posted their genetic profile for methylation and detox according to 23andme and Genetic Genie. Here is mine.
Your SOD2 is homozygous like mine is, your VDR Taq is homozygous - the same as me and everyone else in this forum who have posted results
+1. Someone should create a new thread and filter out the genetic results. Compile them please. Who is willing to make such thread?
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Your SOD2 is homozygous like mine is, your VDR Taq is homozygous - the same as me and everyone else in this forum who have posted results
Not here sorry, it's green. (the SOD2)
https://poiscenter.com/forums/index.php?topic=2684.msg37429#msg37429
That might not matter for general or just chance nuances.
VDR taq I have indeed.
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Yes, I'll try to do this - but not today. Yet, all this is very incomplete and I guess that we (on the forum) can't really interpret all this data.
Ok, prospero offered to make such thread. Just take your time. You can add stuff bit by bit slowly. Make sure to reserve some extra comments in case of expansion (there is a limit on the amount of characters per post).
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Your SOD2 is homozygous like mine is, your VDR Taq is homozygous - the same as me and everyone else in this forum who have posted results
Not here sorry, it's green. (the SOD2)
https://poiscenter.com/forums/index.php?topic=2684.msg37429#msg37429
That might not matter for general or just chance nuances.
VDR taq I have indeed.
Yes I know, I said only me and Prospero had red SOD2 and then the rest of us all had VDR taq red, maybe it wasn't clear.
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From what I'm reading, it seems that VDR taq AA is quite common. Genetic Genie says that it's often either VDR taq or VDR bsm which is homozygous : "VDR Tak and VDR Bsm are usually inverse from eachother. So if there is a (+/+) VDR Tak, there would be a (-/-) VDR Bsm. However, this is not always the case."
See also : https://selfdecode.com/snp/rs731236/# (https://selfdecode.com/snp/rs731236/#), they say A is the most common allele and rather a good thing.
Fortuitously, I just saw something which may interest Muon : "These leprosy data suggest that one of the genetic factors influencing this Th1-Th2 shift in humans may be VDR genotype, with tt homozygotes tending to produce a TH1-type immune response and TT homozygotes producing a Th2-type response. https://sci-hub.do/10.1086/314536 (https://sci-hub.do/10.1086/314536)
However I can't understand the papers which use TT/tt in place of AA/GG for VDR taq (most of the papers), so I don't know which is which.
As for my results, I'm more interested by the COMT mutations. What I'm reading on rs4680 AA is spot on and relates to dopamine / norepinephrine levels, vulnerability to dependence, etc.
Nanna1 said VDR taq mutation could also impact COMT, when discussing about endorphins (https://poiscenter.com/forums/index.php?topic=3151.msg36001#msg36001).
It's a pity my 23andme data isn't complete on methylation, it looks like I have many mutations.
Also, about SOD2 A16V mutation : https://selfdecode.com/snp/rs4880/# (https://selfdecode.com/snp/rs4880/#)
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I wouldn't bother trying to find an explanation and go in-depth....at least for now. Priority is to collect, filter and summarize data in a separate thread about genetic results. People can draw conclusions from that. I would first think about how you would set up such thread regarding format if I were you. Btw I have no knowledge about genetics, I'm a complete n00b regarding that subject. It's all hocus pocus to me. You guys probably know more about it than I do.
Edit: I see plenty of papers mentioning links between Th1 and VDR. I will look at it later. There is actually a theory out there that says you should avoid vit D to fix autoimmune disease and that the body downregulates vitamin D to restore Th1 response. I posted about that somewhere can't recall the name. It's probably in the vit D thread.
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Yes, it's not that easy given the format of the results (screenshots). I guess that the only solution is to have first a kind of table synthesizing the anomalies and their frequency, then the screenshots of the results, person by person, which will take some space.
Edit @Muon : ok, I'll do that.
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You can just give a hyperlink to the post itself for reference, no need to double post screenshots. Perhaps other members can chime in how to set it up and give suggestions.
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Yes, it's not that easy given the format of the results (screenshots). I guess that the only solution is to have first a kind of table synthesizing the anomalies and their frequency, then the screenshots of the results, person by person, which will take some space.
https://www.youtube.com/watch?v=nAFkKOrSZ9k Watch the second half of this video Prospero they speak about things you can do to manage homozygous COMT, things like deep breathing are helpful for your variant, avoid phenols in foods and cleaning products and avoid caffeine.
I have homozygous MAO-A which means my neurotransmitters stick around for too long, also probably a problem in my POIS
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Mast Cells Promote Non-Alcoholic Fatty Liver Disease Phenotypes and Microvesicular Steatosis in Mice Fed Western Diet (https://aasldpubs.onlinelibrary.wiley.com/doi/abs/10.1002/hep.31713)
Post-orgasmic illness syndrome: a case report (https://f1000research.com/articles/2-113/v1)
"* These elevations are due to fatty liver with no viral cause (as determined by PCR & liver ultra-sonography)."
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Now, I was cheeky enough to tick for two extra markers that wasn't on the lab order from the beginning: cortisol and P-Bilirubin and what do you know, the bilirubin is at the lowest normal and the cortisol is pretty hight too. The doctor just payed attention to the slightly elevated P-PSA and said I could go see an urologist if I wanted but it was not hight enought to worry about. I don't have any idea about any relation between elevated PSA and POIS (does anyone here?),
Do you happen to take colostrum by any chance? I watched a youtube video before that said it can rise PSA levels dramatically, it put me off using it as I am at risk of prostate cancer.
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No colostrum now, I took it 2-3 years ago.
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Hi guys, little feedback, i did biopsy of sample from stomach week a go when i did gastroscopy where they found gerd, duodentitis, erosive gastritis which is manifested by bleeding. Today came results from biopsy.
"Two pieces of gastric antrum mucosa were received. The integumentary epithelium is neat, the fovea converge towards one end (erosion) and the glands are of adequate thickness. In the lamina propria above the glands are scarce lymphocyte infiltrates and slightly smaller foci of bleeding. H.pylori is negative. DG. GASTRITIS CHRONICA EROSIVA"
So,.. my whole body is inflamed due to open wounds in stomach due to lack of gastric mucosa, my body is constantly fighting bacteria, pathogens and undigested food due to open wounds. Consuming cold cuts, bacon, diary, vinegar are making my POIS symptoms stronger and intolerable. Probably my body is telling me that way that i must avoid that kind of foods if i want to heal stomach. (Hollywood movie script). That's why i have psoriasis and POIS after sex/fapping.
I did a week of antacid and symptoms came back a little, little bit of POIS feelings/symptoms as before betain pills so that is proof that i had low stomach acid before. Why in the hell i am feeling great because of betain pills, but lowering stomach acid with antacid is making feel like shit. So i will stop with antacid pills.
Is it possible that the body wants to cure gastritis by lowering stomach acid and then i got chain of problems, POIS, undigested food goes to duodendum and making inflammation there (duodentitis). Could it be that syllimarin and artichoke making some protective film arround stomach so that's why i feel great after consuming that. Already stopped with betain pills because now i'm scared that i could make things worse. Gonna stick with strict diet, fasting and syllimarin and artichokes.
Still not doing rounds of chelating from mercury. I stopped at round 27 where i did not see major improvements. I strongly recommend gastroscopy/endoscopy because it could take years after chelating and even then you could not feel better while problems could be in your stomach/gut. I did make 27 weeks of chelating, that is almost 7 months of chelating where i did not feel better. Will report soon. All the best.
Mast cells look like ordinary lymphocytes if you do not apply special staining. I would do another biopsy and apply staining for:
CD117 and in addition to that: CD2 and CD25 to look for CD117/CD2 and CD117/CD25 Co-expression.
Psoriasis (https://poiscenter.com/forums/index.php?topic=2301.msg38824#msg38824)
IFN-gamma and IL-8 can be tested. At least one chemokine could be elevated, since there are infiltrates present. Chemokines attract cells. IL-8 does have such function and it's a mast cell attractor. Igy could have a similar serum profile as that of mine. Mast cells can release chemokines which attract other cells. I suspect the infiltrates are TH1 cells or MCs. CRH makes psoriasis worse.
Some cytokines will be released upon injury. IL-1beta is one of those. Betaine could work in other ways like suppressing activation of the NLRP3 inflammasome:
Betaine Inhibits Interleukin-1beta Production and Release: Potential Mechanisms (https://www.frontiersin.org/articles/10.3389/fimmu.2018.02670/full)
Look at paper for more potential mechanisms of betaine.
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Hi guys, little feedback, i did biopsy of sample from stomach week a go when i did gastroscopy where they found gerd, duodentitis, erosive gastritis which is manifested by bleeding. Today came results from biopsy.
"Two pieces of gastric antrum mucosa were received. The integumentary epithelium is neat, the fovea converge towards one end (erosion) and the glands are of adequate thickness. In the lamina propria above the glands are scarce lymphocyte infiltrates and slightly smaller foci of bleeding. H.pylori is negative. DG. GASTRITIS CHRONICA EROSIVA"
Dr. Afrin from 'Never bet against occam':
"Fairly early in these first seven years of learning about MCAS, I lost count of the number of patients I diagnosed with the disease in whom I had asked the pathologist to re-visit old biopsies with a new eye toward the possibility of mast cell disease, and voila, it turned out the disease had been sitting in the pathology warehouse for years just waiting to be discovered.
It's not that pathologists don't know how to evaluate biopsies for mast cell disease. Rather, this part of the problem in diagnosing MCAS is two-fold.
First, when "routine" stains are applied to tissue sections, mast cells rarely look like physicians are taught they look like. Instead, just as the disease itself is so chameleon-like at a clinical level, the cells themselves are chameleons, easily masquerading as lymphocytes, plasma cells, histiocytes, macrophages, or spindle cells.
Second, doctors have been taught for a century that mast cell disease is rare, so why on earth would a pathologist ever suspect that some of the lymphocytes, plasma cells, histiocytes, macrophages, and spindle cells he's seeing under the microscope might actually be mast cells?
No, the pathologist needs to be given a reason to do the special staining required to reveal the mast cells for what they are - and the only person who's going to give him that reason is the clinician who's obtaining the biopsy in the first place. But given that that clinician, too, was taught (and, as far as he knows, has experienced) that mast cell disease is rare and is just that one disease, mastocytosis, that shows up with flushing and anaphylaxis, why would he ever suspect mast cell disease and ask the pathologist to look for it?"
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I got a 50 page SNP report with over 1500 SNPs attached bellow if anyone wanted to look, I paid 30 dollars from MTHFR support. Theres a sea of red with MAO-A genes which might be bad.
From the heartfixer website, unfortunately the one gene he is unsure about is MAO A: Monoamine Oxidase A
"Monoamine Oxidase A breaks down serotonin, a neurotransmitter that is generated from the dietary amino acid tryptophan, in a BH4 requiring reaction. Many anti-depressant drugs, including the SSRIs (Serotonin Selective Reuptake Inhibitors) work by blocking the breakdown of serotonin. Defects in serotonin metabolism have been associated with mood and neurological disorders. How best to address the MAO A R297R abnormality is not clear to me. As serotonin metabolism is adversely affected, individuals with the R297R defect should avoid large doses of high tryptophan foods (see appendix). High doses of St. John’s Wort, often taken to address depression, could lead to mood swings as serotonin levels fluctuate. Dr. Yasko recommends frequent dosing in small amounts of St. John’s Wort, 5HTP (a tryptophan metabolite), and the Mood S RNA formula if serotonin support is needed. If serotonin production is impaired on the basis of BH4 deficiency secondary to a Methyl Cycle abnormality, as the abnormality itself is addressed, BH4 levels should stabilize, hopefully normalizing serotonin production."
Foods High In Serotonin (or Amino Acid Precursor Tryptophan)
Turkey, Chicken, Chicken Liver, Tofu
Almonds, Peanuts, Soy Nuts
Milk, Yoghurt, Cottage cheese
Spirulina (seaweed), Brewer’s yeast Watermelon Seeds
I'll avoid these foods then as much as possible, yoghurt, spirulina give me really bad brain fog reactions pupils overly dilated, chicken I don't feel great waking in the morning after eating. Milk I haven't had for over a year. Almonds aren't that bad for me.
I thought the reaction to yoghurt was histamine related but it seems not.
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https://poiscenter.com/forums/index.php?topic=2684.msg39266#msg39266
Page 52/61 from the file you provided:
"NOTE: The presence of Candida in the GI tract diverts Pyruvate away from its preferred pathway (Kreb's Cycle), and results in less cellular energy."
I did get a stool test back after I posted about starting Azithromycin, which stated that there was a large amount of fungus/yeast that was microscopically visible in my stool - much more than the baseline expectation for yeast in a stool sample - but it was unable to be cultured potentially because the yeast didn't survive the GI tract (other stool tests have said no yeast detectable, but those previous ones only checked for culture, not under a microscope).
Not sure what the implications of the large amount of dead yeast in my stool (maybe it was from small intestine... SIFO?), other than I will now start an antifungal regimen and hope it somehow helps.
I wonder whether blocking pyruvate decarboxylase helps. I have no idea how to interpret your results. DBH, COMT, MAOA could be problematic regarding catecholamine degradation. ATG16L1 associated with Crohn's. IL-13, IL-5: Allergies/Th2 activation. I'm clueless about these SNPs, I don't understand the basic principles of these.
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https://poiscenter.com/forums/index.php?topic=2684.msg39266#msg39266
Page 52/61 from the file you provided:
"NOTE: The presence of Candida in the GI tract diverts Pyruvate away from its preferred pathway (Kreb's Cycle), and results in less cellular energy."
I did get a stool test back after I posted about starting Azithromycin, which stated that there was a large amount of fungus/yeast that was microscopically visible in my stool - much more than the baseline expectation for yeast in a stool sample - but it was unable to be cultured potentially because the yeast didn't survive the GI tract (other stool tests have said no yeast detectable, but those previous ones only checked for culture, not under a microscope).
Not sure what the implications of the large amount of dead yeast in my stool (maybe it was from small intestine... SIFO?), other than I will now start an antifungal regimen and hope it somehow helps.
I wonder whether blocking pyruvate decarboxylase helps. I have no idea how to interpret your results. DBH, COMT, MAOA could be problematic regarding catecholamine degradation. ATG16L1 associated with Crohn's. IL-13, IL-5: Allergies/Th2 activation. I'm clueless about these SNPs, I don't understand the basic principles of these.
I have thought all these four and a half years my symptoms are because of candida overgrowth but doctors never tested for this no matter how many times I told them to check for fungal infections, I also have seen dead candida strands in my stools. My stools frequently have bubbles float, cloudy water, and at the worst times they have been liquid and my brain felt infected. My arabinose levels (candida indicator) were over double the highest range in the OAT test I did a year ago. Arabinose levels are much higher in autistic boys than non autistic boys.
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I wonder if the pyruvate to lactate ratio is out of balance and skewed towards pyruvate. They don't test for C. Albicans overgrowth because there is no definitive test for it, only for systemic infection but we are not talking about that.
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I have thought all these four and a half years my symptoms are because of candida overgrowth but doctors never tested for this no matter how many times I told them to check for fungal infections, I also have seen dead candida strands in my stools. My stools frequently have bubbles float, cloudy water, and at the worst times they have been liquid and my brain felt infected. My arabinose levels (candida indicator) were over double the highest range in the OAT test I did a year ago. Arabinose levels are much higher in autistic boys than non autistic boys.
Anti fungals like oregano oil help me when I'm feeling really sick/infected. Luckily my stools have improved a lot in the last year after taking oregano oil, one month of nystatin, bentonite clay from the functional medicine practitioner I saw a year ago, and from changing my diet.
The problem with Nystatin is that it only treats candida in the gut, and not systemic candida, I tried to get fluconazole off my gp but the most he could give was five days worth which I took in september.
There was one active member(can't remember his name) a few years ago on here who took a course of fluconazole for a few months and he never returned to update, his profile also got deleted.
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I upgraded from the free version of the Nutrahacker gene mutation report that I posted earlier and bought the complete Complete gene mutation report. I've attached the complete report bellow, it gives advice on what supplements to take and avoid. It doesn't really seem more helpful than the free version was.
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Regarding folic acid and food; aren't grains high in folic acid? And what does it mean to have an active vitamin B12 elevated regarding methylation?
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Regarding folic acid and food; aren't grains high in folic acid? And what does it mean to have an active vitamin B12 elevated regarding methylation?
Grains have fortified folic acid added to them, green vegetables have methyl folate. Have you done a methylmalonic acid test it can show if your body is absorbing the b12, a homocysteine test would be useful also. You may have a functional b12 deficiency despite having high levels. I'm not sure about your second question but I do know folate is required to bring b12 to the cells.
I found the MTHFR reddit to be helpful on methylation they can answer your questions or b12 wake up fb group is good also.
I've just found out from my gene anaylsis that I can't take folinic acid, which explains why I wasn't feeling good on the brain gain folinic acid supplement.
L methyl folate also makes me feel bad which is the one it suggests I take however I was always swallowing a pill and never tried sublingually. Now I'm taking a tiny bit from a 400mcg pill under my tounge and it works much better. I've seen other people advise you need to start with small amounts usually until your body adjusts.
It also suggested I take hydrox b12 which I also reacted badly to in the past but again I'm starting with a tiny dose now and all together they seem to work well. I'm taking b minus from seeking health for the other b vitamins.
I think if people in here focused on fixing their methyl cycle defects in here I think they would have a lot less problems, methylation is really important.
Methylation issues can also be the cause of autonomic dysfunction
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Have you done a methylmalonic acid test it can show if your body is absorbing the b12, a homocysteine test would be useful also.
From what I understand is that if B12 is high, MMA is low and vice versa. Unless you have a small bowel syndrome which could lead to both an elevated B12 and elevated MMA. Homocysteine is normal, MMA has never been tested.
You may have a functional b12 deficiency despite having high levels.
Yes Simon66 told me the same thing.
Methylation issues can also be the cause of autonomic dysfunction
I suspect that my autonomic dysfunction is due to neuroinflammation.
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https://poiscenter.com/forums/index.php?topic=2684.msg39343#msg39343
https://www.reddit.com/r/covidlonghaulers/comments/l40ls6/big_piece_of_the_puzzle_blocking_catecholamines/
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The report says I have a Focus score of 1.0. And it says that score is equal to lymphocytes/50 cells. Something like that.
Hi guys, little feedback, i did biopsy of sample from stomach week a go when i did gastroscopy where they found gerd, duodentitis, erosive gastritis which is manifested by bleeding. Today came results from biopsy.
"Two pieces of gastric antrum mucosa were received. The integumentary epithelium is neat, the fovea converge towards one end (erosion) and the glands are of adequate thickness. In the lamina propria above the glands are scarce lymphocyte infiltrates and slightly smaller foci of bleeding. H.pylori is negative. DG. GASTRITIS CHRONICA EROSIVA"
https://poiscenter.com/forums/index.php?topic=2695.msg39068#msg39068
Are these truly lymphocytes and if so, what kind of lymphocytes are we dealing with? Altered local chemokine signaling/gradients could attract these cells. What molecules are capable of attracting lymphocytes leading to infiltration? Something that could be explored. More POISers could be dealing with tissue infiltration if cytokines/chemokines are involved in POIS.
If sIL-8 plays a key role in male genital tract (MAG) inflammation/infection then it might lead to infiltration of leukocytes in the MAG (and thus to barrier disruption?). Interleukin 8 and the male genital tract (https://sci-hub.se/10.1016/j.jri.2013.02.004) This doesn't make sense in female cases though.
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New Bicom Bioresonance results this week:
Recommended supplements (deficiencies): Vitamin E, B5, manganese, glutamin, Antimycotis, Salvestrols
Issues: Straine intercellular tissue, fungus (not candida)
Forgive me for being skeptical but how can such a thing give such specific readings based on Electromagnetic fields alone. I know that Electromagnetic fields do have an effect on our cells and bodily functions but it seems very suspicious to me that it can give you such accurate/specific readings and suggestions based on that alone. I saw a video before of someone testing it on a material object and it still gave that a reading eg: it assumed it was a human.
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New Bicom Bioresonance results this week:
Recommended supplements (deficiencies): Vitamin E, B5, manganese, glutamin, Antimycotis, Salvestrols
Issues: Straine intercellular tissue, fungus (not candida)
B5 is needed for or contribute to:
- Production of adrenal and pitutary-hormones
- Production of antiinflammatory substances (cortisol)
- Production of stommach acids
- Normal blood sugar levels
- Healthy skin
- Prevent inflammation of the periosteum
- Antioxidant activity
- Increases stress resistance
- Antihistamin effects to reduce allergy reactions
- Important for B2 production
- Lowers colesterol and triclycerides
I experience issues with almost all of those things. However I have taken B5 in supplements at thousands times higher dose than RDI for a long time, but I believe the uptake is really bad because of my intestinal problems.
Vitamin E needs bile and pancreases enymes to be absorbed. I think my bile-production in POIS is greatly reduced since the stool gets yellowish during and after POIS (decreased fat-absorption). B5 is said to be "easy absorbed by the intestines" though. No toxic doses is known. Over 10 000 mg/day might cause diarrhea.
Vitamin E deficiencies (of whitch I share many):
- perifer neuropathy
- muscle and joint pain
- arthritis
- allergy
- dermatitis
- exzema
- dry hair
- har loss
- enlarged prostate
- migraine
- digestional problems
- vein inflammation
- varicose veins
Manganeese contribute to:
- production of dopamine from tyrosine
- production of tyroxine (most important thyroid gland hormone)
- important for adrenal fuction
- importat for bone- and tissue production
- good blood coagulation
Glutamin is known for healing the guts. Researchers of this study (https://pubmed.ncbi.nlm.nih.gov/11694601/) conclude that:
"Glutamine is a major nutrient to maintain intestinal barrier function in animals and humans. Depletion of glutamine results in villus atrophy, decreased expression of tight junction proteins and increased intestinal permeability. Moreover, glutamine supplementation can improve gut barrier function in several experimental conditions of injury and in some clinical situations. Furthermore, preventive effects of glutamine in experimental models of intestinal injuries have been recently reported. Despite promising data in experimental models, further studies are needed to evaluate glutamine supplementation in clinical practice. "
My thoughts: Either POIS is involved in intestinal permability (wich causes most POIS symptoms) or intestinal permability (because of stress) causes POIS symptoms. Or both things happens independently. Either way, healing the gut is extremely important and increasing liver/bile function and stommach acid (1 teaspoon sea salt every morning in hot water). Plus improving sleep by going to bed between 10-11 pm and not watching bright computer screens or doing mental work one hour before bed. Plus improving blood circulation by exercise/walks. Plus eating foods hight in cholesterols and low on sugar/starch.
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Forgive me for being skeptical but how can such a thing give such specific readings based on Electromagnetic fields alone. I know that Electromagnetic fields do have an effect on our cells and bodily functions but it seems very suspicious to me that it can give you such accurate/specific readings and suggestions based on that alone. I saw a video before of someone testing it on a material object and it still gave that a reading eg: it assumed it was a human.
It is what it is. A discussion of what it is could be held in another thread. There are dozens of frequence technologies, many developed by the russians. Some are more trustworthy then others. Bicom is one of the most serious companies and their equipment are the most expensive and used at hundreds of public hospitals, many in Germany. I have plenty of experiences of people who, with the help of theese technologies, have got rid of various serious and long term disease, that the public health could not come near to fix. What is less reliable is a cherry picked Youtube video that claims it has debunked something.
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Intestinal B cell-activating factor: an indicator of non-IgE-mediated hypersensitivity reactions to food? (https://onlinelibrary.wiley.com/doi/full/10.1111/j.1365-2036.2010.04314.x)
High levels of BAFF have been reported in patients with allergic disease (asthma) and autoimmune diseases such as systemic lupus erythematosus, Sjogren's syndrome, rheumatoid arthritis, systemic sclerosis, mixed cryoglobulinaemia, myasthenia gravis and coeliac disease.12-16 Overexpression of BAFF in animal models leads to B-cell hyperplasia, lymphoproliferation, hypergammaglobulinaemia and symptoms of autoimmunity.
https://poiscenter.com/forums/index.php?topic=2695.msg39394#msg39394
https://poiscenter.com/forums/index.php?topic=2684.msg31172#msg31172
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Muon, way back when I started my Magical TRT Mystery Tour, I had an MRI of the brain ordered by my endocrinologist, resulting in a find of Empy Sella Syndrome. Not sure if/where to post...https://rarediseases.org/rare-diseases/empty-sella-syndrome/#general-discussion
Obstruction of the CSF circulation may result in empty sella syndrome, with flattening of the pituitary gland and resulting hormonal changes.https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31549
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Muon, way back when I started my Magical TRT Mystery Tour, I had an MRI of the brain ordered by my endocrinologist, resulting in a find of Empy Sella Syndrome. Not sure if/where to post...https://rarediseases.org/rare-diseases/empty-sella-syndrome/#general-discussion
Obstruction of the CSF circulation may result in empty sella syndrome, with flattening of the pituitary gland and resulting hormonal changes.https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31549
Thanks, Muon!
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According to liverdoctor.com (https://www.liverdoctor.com/do-you-have-an-alcoholics-liver-even-though-you-dont-drink/) the most common causes of fatty liver are:
- Insulin resistance, pre-diabetes, type 2 diabetes
- High intake of sugar and carbohydrate-rich foods
- High intake of industrial seed oil high in omega 6 fat
- Intestinal diseases such as celiac disease, inflammatory bowel disease and small intestinal bacterial overgrowth (SIBO)
- Autoimmune disease
- Viral infections
I have SIBO. I drank a glass of white organic 12% wine yesterday and was surprised how much I could feel it for two hours after. And the night was horrible. Hight pulse and nightmares and headache. Was it the wine? Histamines? Weak liver?
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I've seen people with MCAS saying they have sudden histamine dumps in the middle of the night so it's probably that. The ethanol in alcohol is also not good for people who have immune system conditions.
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Muon, way back when I started my Magical TRT Mystery Tour, I had an MRI of the brain ordered by my endocrinologist, resulting in a find of Empy Sella Syndrome. Not sure if/where to post...https://rarediseases.org/rare-diseases/empty-sella-syndrome/#general-discussion
Obstruction of the CSF circulation may result in empty sella syndrome, with flattening of the pituitary gland and resulting hormonal changes.https://onlinelibrary.wiley.com/doi/full/10.1002/ajmg.c.31549
ME/CFS at the Intersection of the Nervous & Immune Systems (Lecture) - Michael VanElzakker, PhD (https://youtu.be/rIUccEITT6E?t=1369)
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Went to a neck therapist today and she concluded that I had tense neck muscles and could feel a narrowing in the blood supply to the brain, and vagus nerve, at the upper neck vertebra on the left side - a common problem among people with headaches she said. The whole spine/body was alittle assymetric too. I will have a treatment for that. Only adjusting the vertebra one millimetre might do a huge diffrence in the blood supply she said.
My neck is super fucked up and its defo contributing to my problems, I've been trying exercises to fix it recently. The osteopath said the muscles in front of my neck are way too mobile and that I need to strengthen them. What type of physician was the neck therapist?
When I went on sertraline a few years ago I started to get bad neck pain and stiffness from taking it. I started cracking my neck constantly for relief in dangerous positions, since then I've had some episodes which seemed like a mini stroke where the veins in sides of my head were swollen and painful to touch, neck pain and nausea and barely able to speak a few words. Luckily that stopped happening for a year now.
https://www.youtube.com/watch?v=1UF_HYBCh_Q these guys are really helpful and know their stuff. One vital thing I learnt which I was never doing is that you need to move you chin inwards before doing any type of neck stretch. Now I can do 360 head circles without any pain when having the chin tucked inwards(and I don't mean downwards into your chest)
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Its called ATLANTOtec treatment (https://www.youtube.com/watch?v=gklxd6tNhRc). One 70 minutes session is mostly enought, some people would need a follow up 2 months later. It costs about $180.
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Its called ATLANTOtec treatment (https://www.youtube.com/watch?v=gklxd6tNhRc). One 70 minutes session is mostly enought, some people would need a follow up 2 months later. It costs about $180.
Ok thanks please update on how it works for you, I found a place in the Uk which is £250 but that also includes a follow up session for any muscular release massage required and to also clear any negative cellular memory.
https://marieatlas.co.uk/method-2/
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Result from new bicom bioresonance today shows, along with candida overgrowth and histamine, deficiencies of:
Produced in:
H=Hypothalamus
A=Adrenals
P=Pitutary
T=Thyroid
ADH hormone, H
Dopamin, H/A
FSH, P
Lutein stimulating hormone, P
Melanocyte stimulating hormone, P
T3, T
Glutamate, nervous system
The analysis showed nothing wrong with H or P themself, but yesterday was my best day after weeks of pois (NE tonight again).
I also did a thorough analysis with another machine which i will come back to but it showed medium classed issues with inflamated small intestine, small heart valve volume, high alkaline body and POTS. But otherwise my over all condition was good.
Improving hypothalamus
https://draxe.com/health/hypothalamus-function/
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I initially started treatment due to suspected SIBO, however a breath test during my most recent slump revealed only a minor methanogenic overgrowth (11 ppm methane, <10 reference range). According to a stool test, I have high levels of two known potential pathogens, klebsiella pneumoniae and citrobacter brakii, in addition to an overgrowth of bacteroidetes in my large intestine.
Klebsiella pneumoniae is a Gram-negative, non-motile, encapsulated, lactose-fermenting, facultative anaerobic, rod-shaped bacterium
Although found in the normal flora of the mouth, skin, and intestines,[1] it can cause destructive changes to human and animal lungs if aspirated, specifically to the alveoli resulting in bloody, brownish or yellow colored jelly like sputum.
Citrobacter braakii is a Gram-negative species of bacteria.[1] It has been reported to cause sepsis in an immunocompromised person.[2]
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I'm not a fan of people thinking that "Lyme" is *the*thing* It's one of many pecking away at cellular function, mitochondria, ATP. It's there along with mycotoxins, smokestack pollutants, fluoride in the water, glyphosate in the food and air, and injections that contain heavy metals (want to mess with your neurotransmitters, add some aluminum alongside genetic variants in QDPR) Borellia and its coinfections are part of the puzzle, not the whole picture.
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I just had a GI MAP stool test that showed moderate levels of rhodotorula, which seems to be a yeast that was often thought harmless, but more functional doctors seem to find questionable nowadays from what I can find online (slightly dated article below).
https://www.hindawi.com/journals/ipid/2012/465717/
This was after my Great Plains stool test showed a ton of yeast they couldn?t culture, and Genova showed +1 of rhodotorula by culture.
My doctor thinks this may be significant, as they mentioned yeasts are notoriously difficult to culture, so it could mean there is a lot of it.
Given that I have treated for H Pylori and Klebsiella Pneumonia in the past with many different antibiotics, and my symptoms still persist, I?m beginning to lean towards maybe the rhodotorula being an issue. Unfortunately, fluconazole does nothing for it.
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I'm booked for a new hormonal laboratory analysis. The endocrinologist has checked the following values to be tested:
P-Testosterone
P-SHBG
P-FSH
P-LH
I could check some other values on the paper. Would any of those be of interest for me/ us? (perhaps something with the hypothalamus/pitutary, inflammation status or kidney/liver)
S-Kalcitonin
S-PAPP-A
S-hCG free beta chain
S-IGF 1
S-GH
S-IGF BP3
S-Kromagranin A
S-AMH
A-Inhibin B
S-GAD-ak
S-IA2-ak
S-C-Peptid
S-DHEAS
S-Thgl
S-TRAK
S-Insullin
S-TPO-ak
S-Thgl-ak
S-TRAK
S-Gall acids
P-Progesterone
P-Prolaktin
P-Teofylline
P-Valproate
P-Estradiol
P-T3, total
P-T4, total
P-Mykofenolat
P-ACTH
B-Takrolimus
B-Cyclosporin
P-Renin
S-ACE
P-Katekolamine, fee
DNA-Fill, PT mutation
DNA-FV, APC, resistense
DNA-Laktointolerance
DNA.ApoE, genotype
DNA-HFE genotype
DNA Y-Chromosomedeletion
Single proteins:
S-Albimin
S-Antitrypsine
S-Orosomukoid
S-Haptoglobine
S-IgA
S-IgM
S-IgG
S-CRP
S-Free light Ig chains
S-Transtyretine (prealbimun)
S-Beta-2-microglobulin
S-RBP
S-sTfR
S-Ceruloplasmine
S-Amyloid A
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Is that the entire list of options?
Chromogranin A and perhaps additionally: Renin, IGF-1.
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Also ACTH maybe? I remember that a few members had an abnormally elevated value, and it was mentioned in several theories.
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Yes, thats the entire list of options. Thats the top of their knowledge here...
Ok, Chromogranin A, Renin, IGF-1 and ACTH is suggested. I plan to take this the day after tomorrow. Had an NE this night so the effect of that should be at climax then. I'd like to try all hypothalamus hormones, but I'm mot sure what they are in the list.
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If you pick one out of those 3 I gave you, make sure it's Chromogranin A.
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Ok, what kind of clue would it give? I might have to explain myself when the doctor finds out that I have fiddled with the form.
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Ok, what kind of clue would it give? I might have to explain myself when the doctor finds out that I have fiddled with the form.
https://poiscenter.com/forums/index.php?topic=3236.0
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I did the blood samples today and checked also: Chromogranin, renin, IGF-1, ACTH, S-ACE and S-GH (growth hormone) and I will have the answer in about a week. I also wanted to test the S-DHEAS and TPO- antibodies, but that would be stretching it.
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Are you from Germany Bonebroth? Some terms of that list are Deutsch.
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Scandinavia here! Hope that counts! :)
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Scandinavia here! Hope that counts! :)
Otherwise I would have said to get these checked:
https://www.celltrend.de/wp-content/uploads/2018/09/18-05-25-POTS-Anforderungsschein-eng.pdf
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Its called ATLANTOtec treatment (https://www.youtube.com/watch?v=gklxd6tNhRc). One 70 minutes session is mostly enought, some people would need a follow up 2 months later. It costs about $180.
Ok thanks please update on how it works for you, I found a place in the Uk which is £250 but that also includes a follow up session for any muscular release massage required and to also clear any negative cellular memory.
Did it today! It was a very thorough treatment. After they did a new analyse whitch showed that my spine straitened and my body balanced from 4 kilo on the left legs to only 5 grams so I'm hopeful. But now I have more headache and face ithching and have dry eyes and cold fingers/feets without any O for some days and it was better yesterday (perhaps this is because overindulged in sugary desserts today). They said it could be worse first days. So I'll report any improvements if I notice such.
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FSH 1.2 1.5-12.4 mIU/ml
My fsh is low. I looked at my older hormone test, my fsh has always been low. Even around the age of 19.
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"Gonadotrophin-releasing hormone is produced and secreted by specialised nerve cells in the hypothalamus of the brain. It is released into tiny blood vessels that carry this hormone from the brain to the pituitary gland, where it stimulates the production of two more hormones: follicle stimulating hormone and luteinising hormone. These hormones are released into the general circulation and act on the testes and ovaries to initiate and maintain their reproductive functions. Follicle stimulating hormone and luteinising hormone control the levels of hormones produced by the testes and ovaries (such as testosterone, oestradiol and progesterone), and are important in controlling the production of sperm in men and the maturation and release of an egg during each menstrual cycle in women."
https://www.yourhormones.info/endocrine-conditions/male-hypogonadism/ (https://www.yourhormones.info/endocrine-conditions/male-hypogonadism/)
certainlypois2: How is your testosterone levels?
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Right now
Testosterone serum 303 264-916 ng/dl
Free Testosterone 18.2 8.7-25.1 pg/ml
It's usually in the lower end of the range. But i did have a result that was 600 ng/dl. I was feeling pretty good that day.
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Deficiencies of any theese hormones is a sign of comprimised function in the pitutary and hypothalamus:
Adrenocorticotrophic hormone (ACTH) (targets the Adrenals)
Thyroid-stimulating hormone (TSH) (targets the Thyroid, temperature controlling, heart rate)
Luteinising hormone (LH) (targets the testes)
Follicle-stimulating hormone (FSH) (targets the testes)
Prolactin (PRL)
Growth hormone (GH) (Stimulates growth and repair)
Melanocyte-stimulating hormone (MSH)
Antidiuretic hormone (ADH) (or Argenine Vasopressin, AVP) (Controls the blood fluid and mineral levels in the body by affecting water retention by the kidneys. Deficiency leads to dryeness, low blood pressure, varicose veins and slow bowel movements.
Oxytocin (anabolic hormone that heals osteoporosis)
Corticotropin-releasing hormone (helps regulate metabolism and immune response by working with the pituitary gland and adrenal gland to release certain steroids)
Gonadotropin-releasing hormone (instructs the pituitary gland to release more hormones that keep the sexual organs working)
Prolactin-controlling hormones
Thyrotropin-releasing hormone (activates the thyroid, which releases the hormones that regulate metabolism, energy levels, and developmental growth)
certainlypois2: Have you tested any of the other hormones on that list?
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My endo says one adrenal gland is producing way too much aldosterone. She prescribed something similar to (but not the same as) spironalactone.
If I were younger, doc would recommend surgery to remove adrenal gland.
Steroid hormones during a flare:
CORTISOL *688.000 nmol/l 133.00 - 537.00
Aldosterone SERUM/PLASMA * 2210 pmol/l 61 - 970
Flare behaviour is typical for MCAD. Serotonin, locally released by intra-adrenal mast-like cells may be responsible for the increased values above, see articles below. And since we are talking about a flare it will probably normalize again.
Role of Mast Cells in the Control of Aldosterone Secretion (https://www.thieme-connect.com/products/ejournals/html/10.1055/a-1119-1063)
Serotonin-induced stimulation of cortisol secretion from human adrenocortical tissue is mediated through activation of a serotonin4 receptor subtype (https://www.sciencedirect.com/science/article/abs/pii/0306452292900476?via%3Dihub)
(https://upload.wikimedia.org/wikipedia/commons/a/a2/Renin-angiotensin-aldosterone_system.png)
Contributions of ACE and mast cell chymase to endogenous angiotensin II generation and leucocyte recruitment in vivo (https://academic.oup.com/cardiovascres/article/92/1/48/538626)
Conclusion
"In vivo, Ang II is primarily generated by ACE under basal conditions, but in inflammatory conditions, the release of MCP amplifies local Ang II concentrations and the associated inflammatory process. Thus, AT1 receptor antagonists may be more effective than ACE inhibitors for treating ongoing Ang II-mediated vascular inflammation."
Demo had clogged arteries (https://poiscenter.com/forums/index.php?topic=2301.msg37086#msg37086)
https://poiscenter.com/forums/index.php?topic=2545.msg40222#msg40222
Interesting cortisol discussions. I just recently completed CT scans of my adrenal glands, found benign nodules/tumors which might explain my resistance to blood pressure control meds. Under supervision of a nephrologist. I also have high creatinine count. Kidney problems have been a mystery to me.
Ref (https://poiscenter.com/forums/index.php?topic=2301.msg34089#msg34089)
"Increase in mast cell population and upregulation of the 5-HT signaling pathway occur in aldosterone-producing adenomas. In particular, aldosterone-producing adenoma cells overexpress 5-HT4 receptors and are hyper-responsive to 5-HT4 receptor agonists. These data suggest that the intra-adrenal serotonergic regulatory system represents a potential target for development of both adrenal imaging methods to evaluate the lateralization of aldosterone production, and pharmacological treatments of primary aldosteronism." Role of Mast Cells in the Control of Aldosterone Secretion (https://www.thieme-connect.com/products/ejournals/html/10.1055/a-1119-1063)
Wiki: https://en.wikipedia.org/wiki/Aldosterone#Stimulation
What's going on here?
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Notable things in my blood tests
Antibodies:
:ENA Sm/RNP- Positive
ANA Tire - HEp2 Nuclear pattern - speckle - Second pattern : FND 1/640
Antinuclear antibodies titre - 1/640
Low serum folate - 2.6 ug/l in 2016 - 3.4 in 2018 - Normal ranges - 3.1-20.50 ug/l
EBV Virus
EBV capsid IgG level- Detected (Consistent with past not recent infection with EBV)
EB virus IgM antiobdy level - Not detected
Unsure if these mean anything:
Renal profile
Serum sodium - 146 mmol/L Normal range : 135-145mmol/L
FBC Lymphocyte count - 1.2 - Normal range : 1.2-3.5
Tissue transglutaminase Abs - (DUFF) - 0.3 Normal range 0-7
(Serologically negative for coeliac disease)
Please let me know if you any thoughts on these as I don't really know what they mean. I am planning to get a lot more blood tests in specific things so please let me know the important ones I should get as I'm unsure what to get done. Do you think I should be in a POIS state when I have the tests done or not. I know for neurotransmitter ones it would make a big difference.
Iwillbeatthis, I would highly recommend seeing a rheumatologist. Your ANA titre (indicator of autoimmune disease) is substantially higher than almost all of the healthy population and you are positive for two antibodies associated with lupus.
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Iwillbeatthis, I would highly recommend seeing a rheumatologist. Your ANA titre (indicator of autoimmune disease) is substantially higher than almost all of the healthy population and you are positive for two antibodies associated with lupus.
It was a private rheumatologist I saw four and a half years ago who ordered these tests, she said the results were unusual for my age, however when I tested for C3 and C4 they were normal (wasn't in POIS state but don't think it would have made a difference). The thing is if you have a condition they don't know about then they are no help to you even with things showing on tests.
I don't think typical specialists can help us, it needs to be a research specialist who is willing to make the effort to investigate further and work out what's going wrong rather than trying to find a specific condition.
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Aminos Acids (No GABA detected and low in GABA precursors like Leucine, Glutamine, Valine, Serine)
_URINE AMINO ACIDS QUANTITATION_
Ref Range:
AMINO ACID Result (uM/mM Crea) Reference Range (uM/mM Crea)
~
Phosphoserine 4 Not Detected
Taurine 58 16-180
Phosphoethanolamine 3 Not Detected
Aspartic Acid 2 2-7
Hydroxyproline 1 <13
Threonine *6 7-29
Serine *16 21-50
Asparagine 4 <23
Glutamic Acid 1 <12
Glutamine 20 20-76
Sarcosine 0 Not Detected
Alpha Aminoadipic acid 1 Not Detected
Proline 0 <9
Glycine 46 43-173
Alanine 21 16-68
Citrulline 1 <4
Alpha Aminobutyric 0 <4
Valine 3 3-13
Cystine 3 3-17
Methionine *1 2-16
Isoleucine 1 <4
Leucine *1 2-11
Tyrosine 3 2-23
Phenylalanine 3 2-19
Beta Alanine 2 Not Detected
Beta Aminoisobutyric 2 <91
GABA 0 Not Detected
Ethanolamine 17 Not Detected
Tryptophan 0 Not Detected
Hydroxylysine 0 Not Detected
Ornithine 2 <5
Lysine 7 7-58
1-Methylhistidine 59 Not Detected
Histidine *25 26-153
3-Methylhistidine *14 19-47
Anserine 1 Not Detected
Carnosine 5 Not Detected
Arginine 1 <5
.
Low amino acids are common with those with a MTRR 11 mutation, low amino acids signify you need extra methylation support. So it makes sense how SAM E was helpful for you. Dr Amy Yasko uses the Urine Amino Acids Test as her main guide for treatments in her Methylation protocol.
"The newer SNP panel also looks at MTRR11. We have found that increased use of the Bowel formula seems to make a big difference for those who are MTRR11 ++ and who have low overall amino acids. Again this was information presented at Autism One last year and if you dont have those DVDs you might want to take a look at them."
They are talking about bowel support rna from holistic health, methyl max from holistic health would also be helpful but its recommended you do their step one before going for additional supports.
I also have MTRR 11 mutation heterozygous so I'm interested to see what my UAA test shows when I do it soon.
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Blood test four weeks ago taken at 09:40 am (two days after nocturnal emission with associated normal POIS symptoms).
My GH (growth hormone) was 0.15 μg/L. There was no reference interval due to pulse secreation. The value seems to be fluctuating during the day and peaks at night. In the morning it should go down, but really as much as 0.15 μg/L? I read on a site that normal interval should be between 0.4 to 10 μg/L.
LH: 3.6 IE/L (1.7 - 8.6)
FSH: 4.0 IE/L (1.5 - 13)
Testosterone: 18.0 nmol/L (or 519 ng/dL) (Ref: 8.0 - 30)
SHBG: 45 nmol/L (10 - 80)
Testosterone/SHBG quota: 0.40 (0.3 - 1.1)
ACTH: 5.3 pmol/L (1,5 - 14 pmol/L morning)
Renin: 29 mIE/L (5 - 80 mIE/L in the morning after going up)
Chromogranin A: 1.6 nmol/L (< 2,0 nmol/L)
GH: 0.15 μg/L (No reference due to pulse secreation) (0.4 to 10 μg/L Googled)
IGF-1 : 149 μg/L (60 - 207)
Symptoms of GH deficiency at adults (I experience the symptoms in red colour) according to this site (https://www.endocrineweb.com/conditions/growth-disorders/growth-hormone-deficiency-symptoms):
Anxiety and/or depression
Baldness (in men)
Decrease in sexual function and interest
Decreased muscle mass and strength
Difficult to concentration and lack of memory
Dry, thin skin
Elevated triglyceride levels
Fatigue and/or tiredness
Heart problems (only irregular heart beat, slow pulse)
High levels of LDL (the "bad") cholesterol
Insulin resistance
Lower tolerance to exercise
Reduced bone density (possible), making you more susceptible to developing osteoporosis
Sensitivity to heat and cold (sometimes)
Very low energy levels (not always, but regulary)
Weight gain, especially around the waist (on the contrary, weight loss)
The normal causes is a tumor or other damage to the pituitary gland. but then the IGF-1 should also be out of range, which it is not. But my everyday headache seems to be seated behind the eyes, where the pitutary is. However there is some days or even weeks where the pain is almost gone, thats when I havnt had a POIS for a longer time.
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Blood test four weeks ago taken at 09:40 am (two days after nocturnal emission with associated normal POIS symptoms).
LH: 3.6 IE/L (1.7 - 8.6)
FSH: 4.0 IE/L (1.5 - 13)
Testosterone: 18.0 nmol/L (or 519 ng/dL) (Ref: 8.0 - 30)
SHBG: 45 nmol/L (10 - 80)
Testosterone/SHBG quota: 0.40 (0.3 - 1.1)
ACTH: 5.3 pmol/L (1,5 - 14 pmol/L morning)
Renin: 29 mIE/L (5 - 80 mIE/L in the morning after going up)
Chromogranin A: 1.6 nmol/L (< 2,0 nmol/L)
GH: 0.15 ?g/L (No reference due to pulse secreation) (0.4 to 10 ?g/L Googled)
IGF-1 : 149 ?g/L (60 - 207)
Update 2021-04-22: Oberon frequence scanner showed Hepatitis virus infection spread to many organs and thymus degeneration.
Try to get other tests for Thymus and hepatitis to confirm if that is the case and to get more information about those issues, it could be the inflammation degradating some organs if that is the case
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Blood test four weeks ago taken at 09:40 am (two days after nocturnal emission with associated normal POIS symptoms).
LH: 3.6 IE/L (1.7 - 8.6)
FSH: 4.0 IE/L (1.5 - 13)
Testosterone: 18.0 nmol/L (or 519 ng/dL) (Ref: 8.0 - 30)
SHBG: 45 nmol/L (10 - 80)
Testosterone/SHBG quota: 0.40 (0.3 - 1.1)
ACTH: 5.3 pmol/L (1,5 - 14 pmol/L morning)
Renin: 29 mIE/L (5 - 80 mIE/L in the morning after going up)
Chromogranin A: 1.6 nmol/L (< 2,0 nmol/L)
GH: 0.15 ?g/L (No reference due to pulse secreation) (0.4 to 10 ?g/L Googled)
IGF-1 : 149 ?g/L (60 - 207)
Update 2021-04-22: Oberon frequence scanner showed Hepatitis virus infection spread to many organs and thymus degeneration.
Try to get other tests for Thymus and hepatitis to confirm if that is the case and to get more information about those issues, it could be the inflammation degradating some organs if that is the case
My private clinic said they would only test me for Hepatitis B if "my eyes were yellow" because it was soooo expensive ($200) and the cost of my health must not jeopardize the doctors golf club membership card (my thoughts). So I will now try the more uneconomical public health care (otherwise I have to pay for it myself). Yes, I read that the thymus is involved with formation of T-cells and a low T cell response might give room for Hepatitis B, but I also read that the thymus is degenerated before your 20 years old (!?). I have a family doctor who recommended me to also ask for the following tests:
Liver: EBV, Hepatitis B/C, Cytomegalovirus (CMV), Albumin
Immue system: Trombocytes (TPK), White blood cells (LPK), HIV, Auto-immunity test, Connective tissue disease (SLE),
Gut: Gluten intolerance test (again)
Other: Folacin, B12/Zink/Mg/So/Po/Iron (Iron was of great importance), Migrain (visit a neurologist)
At least three members (Bizzy 2016 (https://poiscenter.com/forums/index.php?topic=2406.msg20286#msg20286), Iwillbeatthis 2018 (https://poiscenter.com/forums/index.php?topic=2684.msg26171#msg26171) and Vandermolen 2019 (https://poiscenter.com/forums/index.php?topic=2406.msg27184#msg27184)) have reported signs of auto-immunity (abnormal levels of auto nuclear antibodies (ANA)). (And Iwillbeatthis report EBV). If any of you three read this, have you made any follow up on these tests or any test that indicate leaky gut?
"There are currently over 100 recognized autoimmune diseases [5], including autoimmune liver diseases. One hypothesis suggests that a condition known as "leaky gut" may play a significant role in the development of all autoimmune diseases"
https://drruscio.com/autoimmune-liver-disease/ (https://drruscio.com/autoimmune-liver-disease/)
Today I started a 2-3 days bone broth fast to see if it has some beneficial healing effects of my intestines (according to Dr Axe (https://draxe.com/nutrition/bone-broth-fast/)). Here is an experience from (https://www.uncagedhuman.com/the-full-truth-about-my-bone-broth-fast) someone else who did it.
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Member Bulbo - elevated immunoglobulins:
I checked my IgE level and it was 350 IU/ml ( normal value for adults is <190 IU/ml ).
Posible causes
https://www.healthline.com/health/hypergammaglobulinemia#takeaway
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Got my Urine Amino Acid test results back attached bellow , Carnosine and Beta Alanine are crazy elevated indicating gut dysboisis, I will now run a 360 GI stool test and a h pylori test.
I guess these are why meat was causing me so much issues and not the phenylalanine...
Beta-alanine (high)
Beta-alanine, a nonessential intermediary amino acid, is abnormally elevated in this urine
specimen. Normally beta-alanine is near completely deaminated to alpha-ketoglutarate
(B-6 dependent). Beta-alanine is derived from: (1) the breakdown of DNA/RNA (yeast,
pyrimidine, uracil), (2) activity of unusual bacteria on aspartic acid and, (3) the
hydrolysis of anserine and carnosine, which are peptides found in beef, pork, poultry,
salmon, and tuna. Elevated beta-alanine inhibits the breakdown of anserine and carnosine,
and impairs the renal conservation of taurine and beta-aminoisobutyric acid; taurine is an
important antioxidant, neurotransmitter and essential for the retention and homeostasis of
intracellular magnesium and potassium. Beta-alanine is a neurotoxic substance that
suppresses development in the brain and spinal cord. Beta-alanine also interferes with the
metabolism of the neuroinhibitory neurotransmitter gamma-aminobutyric acid.
Hyper-B- alaninurea has been associated with seizures and somnolence.Patients exhibiting
elevated urinary B-alanine should be retested after given a trial on a low-protein,
low-pyrimidine diet and high B-6 (P-5-P). Elevated levels of B-alanine are highly correlated
with gastrointestinal and genitourinary infections in patients with Chronic Fatigue
Syndrome. Intestinal dysbiosis, especially candidiasis, should be evaluated via a
Comprehensive Stool Analysis.
The levels of one or both dietary peptides anserine and/or carnosine are markedly elevated in this urine specimen, indicating incomplete digestion of anserine-containing meats(chicken, turkey, duck, rabbit, tuna and salmon) and/or carnosine-containing meats (beef, pork, tuna and salmon).
Zinc status should be checked (RBC Elements) since the peptidase activity is zinc dependent. The peptidase activity can also be inhibited by high levels of Beta-alanine, which can result from B-6 insufficiency, or abnormal intestinal flora.
Carnosine (high)
Carnosine, a dietary peptide, is high in this urine specimen. Carnosine is an incompletely
digested peptide that is derived primarily from beef and pork. Carnosine consists of
histidine and beta-alanine. Breakdown of the peptide requires a zinc dependent
peptidase, which can be inhibited by high levels of the ”end product” beta-alanine. Betaalanine can accumulate if deamination of beta-alanine to alpha-ketoglutarate is impaired
due to B-6 insufficiency. Therefore, carnosine can accumulate as a result of high intake
of carnosine containing meats with insufficient zinc and/or B-6 availability. Beta-alanine
can also be elevated as a product of gastrointestinal bacterial conversion of aspartate
and/or breakdown of pyrimidines that are high in yeast. Thus beta-alanine can
accumulate and inhibit hydrolysis of carnosine as a result of significant dysbiosis, or
deficiencies of B-6 and/or zinc. Beta-alanine can have adverse effects in the central
nervous system, but more commonly elevated levels of beta-alanine inhibit renal
conservation of the amino acid taurine which is an important antioxidant,
neurotransmitter and essential for the retention and metabolism of intracellular
magnesium and potassium. If urinary taurine is either low or high, magnesium deficiency
is likely or pending. Comprehensive Stool Analysis (yeast/bacteria), Red Blood Cell
Elements Analysis (zinc, potassium, and magnesium) and assessment of B-6 status are
useful to identify the cause and potential consequences of the inability to break down this
dietary peptide.
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1 methylhistidine was also elevated which means muscle fatigue and tight muscles. Potassium and calcium were low which is probably why. H pylori can also cause low potassium, rubidium and other minerals.
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UTEE showed Copper, sodium, selenium, zinc and phosphorus were low, Vanadium was slightly high.
Hair showed low: copper, calcium, sodium, potassium, chromium, boron, lithium, selenium, rubidium,
A high level of Vanadium (V) was found in this urine sample. Increased V, especially in an unprovoked urine sample, reflects recent
excessive exposure/intake and absorption to V. Vanadium can be highly toxic. Excess levels of V can result from over-zealous V supplementation.
It may also results from exccessive consumption of fish, shrimp, crabs, and oysters that have been harvested near offshore oil rigs. Industrial/environmental sources of V include: processing of mineral ores, phosphate fertilizers, combustion of oil and coal, production of steel, and chemicals used in the fixation of dyes and print (Metals in Clinical and Analytical Chemistry, 1994). V is used in producing rust-resistant, spring and high speed tool steels. Vanadium pentoxide and other vanadates are used as catalysts in the production of sulfuric acid and formaldehyde. Urban air in industrialized areas may have higher levels of V than in rural areas.
Symptoms of V toxicity vary with chemical form and route of assimilation. Inhalation of excess V may produce respiratory irritation and
bronchitis. Excess ingestion of V can result in decreased appetite, depressed growth, diarrhea/gastrointestinal disturbances,
nephrotoxic and hematotoxic effects. Pallor, diarrhea, and green tongue are early signs of excess V and have been reported in human
subjects consuming about 20 mg V/day (Modern Nutrition in Health and Disease, 8th edition, eds. Shils, M., Olson, J., and Mosha, S.,
1994).
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Berlin had high copper on his hair test results:
"Copper Ideally, your copper levels should be lower than zinc to favor a higher zinc to copper ratio. High copper has been implicated in ADD. Copper is the cofactor that works with the enzymes MAO A and MAO B to break down dopamine and serotonin, so high copper may engender a higher degree of degradation of these two neurotransmitters.
Excess copper has also been reported to cause fearful thoughts. If copper replaces zinc in your brain, it may be a factor in migraines, so zinc support may help you with this, as well as bring your copper into better balance."
I also read somewhere high copper lowers GABA too.
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Prospero writes:
But what is puzzling is the result for amino acids. They're almost all under the reference range. Extremely strange.
Another sign of a damaged gut that fails in breaking down protein or absorbing amino acids?
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I'm going to get another full spectra blood analysis but I'm not sure what analyse plan to take.
What markers are of importace for the POIS / inflammation / hormones / leaky gut? Are there a thread for this?
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Yes it's in the comments of the laboratory thread. People can dump their thoughts about parameters in there. Scroll through the pages.
https://poiscenter.com/forums/index.php?topic=3207.0
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Prosperos result
Low amino acids might be a sign that you are not absorping those, maybe because of gut inflammation/SIBO. Amino acids are the building blocks for many hormones.
Journeys result
Journeys cortisol was over reference range (633.0 - nmol / L). I've also had cortisol over reference range at two blood tests in the morning. When I'm in a POIS state I see how my blood vessels on my hands constrict in the morning more than when I'm not in a POIS state. Thats an effect of cortisol. It is vasoconstricting. There are users who claimes that cortisol lowering methods has a profound effect on POIS (Yoga, meditation etcetera).
Hight cortisol might both aggravate POIS symptoms, but also be a direct cause of POIS. Long term stress cause hight cortisol which is shutting down the stommach/intestines and absorption of nutrients important for hormons (fat soluble vitamins, B-vitamins, A-vitamins). Probably the anabolic hormones (testosterone, oxytocin etc) are the first who become deficient since all building materials are used for cortisol/histamin/adrenalin (tahts why some users get well on testosterone therapy). And the POIS inflammation itself will produce high cortisol so the process becomes a vicious circle.
Lowering cortisol levels means lowering stress and that means improving the gut health which in turn improves absorbtion of fat solluble vitamins that are important for hormonal balances, and thats why POIS gets better if you "lower cortisol levels".
Berlin1984's result
A gene that reduce the breakdown of histamine could be a key. There are users who report quick relief upon high intensive training. Last week my therapest said that when you exercise hard, or run fast, your body will burn (break down) cortisol/adrenalin/histamin quicker and leave less in the blood circulation. In the stone age we used to run fast when we were "chased by a lion", but now we are handeling the stress by watching a movie - not unlikely a horror/thiller/action movie that stimulate even more cortisol, when we need it at least - in the night when the body is regenerating our hormonal systems.
Coming up: I just got the results from a big blood test and all values were within range, but the all the diffrent kinds of white blood cells were near the lowest range which according to the analyse indicate low B12, low folic acid (bad absorption?) and celiac disease/gluten intolerance (inflamed/leaky gut?).
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My two new blood analyses doesnt show much but might indicate two things:
1. Slitgtly elevated cortisol as in my previous tests
2. The lower range for white blood cells, might indicate an exhausted immune system and according to the interpretation, low on B12/folic acid and possible celiac disease or chrons.
My comment: Very likely that the gut dysbiotic that I belive I have (ballon stommach, positive SIBO test, skin rashes, smelly gas, diarrhea/constipation ) is causing this. After those blood test I had a better period and stool became better in color and texture on my adjusted SIBO diet.
Then, I accidently got the worst food poisoning in my life (after a sandwich with sallad at a caf?) and vomited 20 times. The last 10 times, when there were no more things to empty in the stommach, there were only green bile coming up (I never thought that bile could go backwards up in the stommach, but a doctor said it could). 30 minutes before I throwed up I also had a glass of ascorbic acid mixed with sodium bicarbonate and liquid B-vitamin complex. I think the sudden pH increase from possibly too much bicarbonate might have made it easy for the bacteria to survive in the stommach, witch made it worse.
Anyway. After 3 days in horizontal position and the worst tension headache I had for a very long time (I guess the muscles were tense after the throw-ups) and loosing two more kilos because of the vomiting/not eating (I weight only 63 kg now) I had yellowish stools, ballon stommach and dry, cold eyes without any NE/O happening last week. This after trying to gain the lost kilos. But my stommach apperantly want to take things in a slower pace. :-\ (2021-11-19 update: Stools starts to regain color/consistence)
I believe the intestinal situation is the main culprit here and in before the end of november I will recive the result of an advanced poop-analyse, just as user Clues latest attribution.
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It's starting to build up a hughe amount of interesting test results here. It would be great to see a compilation of off-the-chart-values that POIS'ers have in common, but also values that are near the endpoints of the normal range (for example the beginning/end quartiles). Since the data is so huge, we should organise a group of members to split the job. Some could focus on vitamin status, other on hormonal values, and other on psychological results etcetera.
It's also interesting to see what members that has normal values, or the percentual diffrence between the normals and off-the-chart members. This should have a new thread called something like "Test Result Compilation" with an intro post that specifies the diffrent analyse classes and then one post for each type of value. We would need a common method to work after. To classify the diffrent analyse values might be a starting point. Anyone interested to be a part of such a "analyse compilation" group?
Some questions to be answered:
How to handle values that changes over time (sometimes within range, sometimes outside)
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Guess what! My new doctor, who is a german gastroenterolog, knew all about SIBO and POIS and will take additional poop analysis and blood tests and put me on a 2 week antibiotic specifically for SIBO. I showed him my "alternative" bacterial analysis and lactulose test and he seriously looked at them and even ask the secretary to scan them and add to my medical journal! I'm still not sure if I'm dreaming or if this doctor is real...
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Guess what! My new doctor, who is a german gastroenterolog, knew all about SIBO and POIS and will take additional poop analysis and blood tests and put me on a 2 week antibiotic specifically for SIBO. I showed him my "alternative" bacterial analysis and lactulose test and he seriously looked at them and even ask the secretary to scan them and add to my medical journal! I'm still not sure if I'm dreaming or if this doctor is its real...
Extremely happy to hear that :-)
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Guess what! My new doctor, who is a german gastroenterolog, knew all about SIBO and POIS and will take additional poop analysis and blood tests and put me on a 2 week antibiotic specifically for SIBO. I showed him my "alternative" bacterial analysis and lactulose test and he seriously looked at them and even ask the secretary to scan them and add to my medical journal! I'm still not sure if I'm dreaming or if this doctor is its real...
That's good to hear, there is more awareness about POIS among doctors than 10 years ago.
BoneBroth, if you think your new doctor would be a good addition to our POIS Doctors list, let me know. You can ask him if he is interested, or, if you prefer, just send me in PM his name and email address and I will ask him.
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I'll give it a try! Xifaxan (also known as Rifaximin) is what the doctor prescribed. It seems to be a popular antibiotic used for SIBO. There are some studies confirming its effectiviness and safety. I can find only two POIS users that has tryed Rifaximin on this forum. It didnt work for user lw (https://poiscenter.com/forums/index.php?topic=2993.msg38722#msg38722), but user Bob morane (https://poiscenter.com/forums/index.php?topic=3098.msg31158#msg31158) reports good results. User Reve (https://poiscenter.com/forums/index.php?topic=3927.msg42334#msg42334) is currently taking it and sais he will update on this. Muon writes that "Hydrogen breathers respond more often positively to non-systemic antibiotics like Rifaximin (https://poiscenter.com/forums/index.php?topic=3385.msg39332#msg39332)." and has a compilation of users that tryed antibiotics here (https://poiscenter.com/forums/index.php?topic=3551.msg37340#msg37340). My SIBO test (https://poiscenter.com/forums/index.php?topic=2684.msg35348#msg35348) showed only methane though...
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I'll give it a try! Xifaxan (also known as Rifaximin) is what the doctor prescribed. It seems to be a popular antibiotic used for SIBO. There are some studies confirming its effectiviness and safety. I can find only two POIS users that has tryed Rifaximin on this forum. It didnt work for user lw (https://poiscenter.com/forums/index.php?topic=2993.msg38722#msg38722), but user Bob morane (https://poiscenter.com/forums/index.php?topic=3098.msg31158#msg31158) reports good results. User Reve (https://poiscenter.com/forums/index.php?topic=3927.msg42334#msg42334) is currently taking it and sais he will update on this. Muon writes that "Hydrogen breathers respond more often positively to non-systemic antibiotics like Rifaximin (https://poiscenter.com/forums/index.php?topic=3385.msg39332#msg39332)." and has a compilation of users that tryed antibiotics here (https://poiscenter.com/forums/index.php?topic=3551.msg37340#msg37340). My SIBO test (https://poiscenter.com/forums/index.php?topic=2684.msg35348#msg35348) showed only methane though...
I tried Xifaxan and Neomycin and it didn’t make a difference for me. Still might help others, but wanted to throw my anecdote into the growing pool of data.
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Thanks Charles_b. What dose and for how long did you take it? Did you do a SIBO test and if so, was it positive on hydrogen, methane or both? Studies show improvements between 70-80% of patients with Rifaximin.
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Tested positive for SIBO. Genova Diagnostics breath test (https://www.gdx.net/product/bacterial-overgrowth-of-the-small-intestine-sibo-test). Let me know if anyone wants to see the full test results.
We want to :-)
Doesn't have to be detailed PNG/JPEG, i think it's enough if you say which kind of SIBO and what are the values(?)
I don't know if those numbers are comparable, but still interesting.
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User Clues SIBO test result is not very convincing for a SIBO diagnosis, the values is almost exactly on the start interval for SIBO. My lactulose tests was postivite only for methane, but quite hight.
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By popular request, here are the SIBO test results from Genova Diagnostics in full. Tested positive on both hydrogen and methane, but only just. Have started a cure of Berberine and Candibactin-AR (https://www.metagenics.com/candibactin-ar), as recommended by my doctor. The latter is a prescription-only mix of herb extracts. The doc says this is scientifically proven to be at least as effective as antibiotics against SIBO.
Please consult a doctor before trying out any of these supplements. For example, Berberine can ostensibly interact unfavourably with some medicines.
Front page:
(https://i.imgur.com/BpcCqDi.jpg)
All pages:
Image 1 (https://i.imgur.com/BpcCqDi.jpg)
Image 2 (https://i.imgur.com/Jy1QAj6.jpg)
Image 3 (https://i.imgur.com/QosyR7O.jpg)
Clues, I'm looking forward to hearing about your results with candibactin AR and berberine. I went on candibactin AR and candibactin BR (which is primarily berberine) and experienced noticeable improvement in both my POIS and overall well-being. The effects unfortunately did not last forever in my case, but I probably experienced the closest thing to remission that I have ever had.
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Not oficial, but i think it is worth to put this info here...
https://www.reddit.com/r/POIS/comments/rgr1xj/pois_research_in_china_before_20211215/
POIS research in China before 2021.12.15
My doctor, Guangpeng Xi, an allergist in Harbin, Heilong Jiang province, China, showed some interesting results of POISers. He collected the blood of six POISers and that of six healthy men, and test the semen-specific IgE antibody in their blood. The experiment shows the antibody exists in all of the 12 blood. BUT! Two POISers have higher concentration antibody than healthy men. Considering all of the POISers devote their blood during their healthy time(no-pois time), it is possible that POIS is caused by allergy, with higher semen-specific antibody than healthy men.
One man in China benefit from desensitization, 90% relief of brain fog. But other poiser undergoing desenz have not seem good results.
Thanks, HOD, sent your China POIS summary above to our POIS Research team.
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Thanks, HOD, sent your China POIS summary above to our POIS Research team.
When does the research start?
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Thanks, HOD, sent your China POIS summary above to our POIS Research team.
When does the research start?
A message from our POIS research team
We appreciate the patience of the POIS community, particularly given the long wait everyone endured to even get the project funded in the first place. We are still working on the administrative and institutional approvals that are needed to restart after the pandemic. While we’d love to give a definitive answer on when those roadblocks will be cleared, unfortunately, the timeline is out of our hands as we work through multiple different offices and institutions. That said, our commitment to the research has not changed: the project will get done, even if it has been delayed much longer than any of us would have liked.
The commitment from the research team is encouraging and comforting. Thank you for sharing!
Thank you, Limejuice! As a long term forum member and Global Moderator, I’m sure you represent the views of many here!
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Now have passed two weeks after finnishing the 10 days with Xifaxan (3 tablets/day). So how am I feeling? The antibitotic was hardly noticably. The only sign that I was on it was perhaps that the poop got more yellowish each and every day on the tablet, but I'm not even sure thats a side effect of the antibiotic since I use to get that symptom with POIS anyway. So I had 1 O and two "near-O-experience" after the 10 days and I must say I got away with those pretty well. However that might as well be the cause of a restraining period before the Xifaxan. I've gained 4 kg though, which might be a good turn, but was that all the christmas food or improved intestines?
Anyway, in all my joy I ate quite a lot of chocholate and coockies every day (which I should avoid accoring to the gastroendolog) and that brought me back to the gas, head ache and rosacea issues again. And that's where I am today. Less affected with POIS (perhaps 50% improvement). Have the bacteria recovered so fast after the Xifaxan and is the small intestine in the same bad shape as before? Then it was expensive 10 days ($190). I will see the doctor this week and discuss further actions.
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I'm still on POIS. My gastroenterologist prescribed diarrhea inducing meds (for gas), during the week POIS was unbelievably unnoticeable, I was full of energy. After 1 week I started to feel worse. Gas came back, dysbacteriosis made worse. He added Rifaximin and some probiotics. I'll start the medications tomorrow and update you.
I feel very ill.
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I'm sorry to hear that lw. I wish you luck on the Rifaximin. My gastroenterologist didnt gave me anything with probiotics. He just agreed on that it might be a good idea to take a probiotic yoghurt after. My therapist dont think its a good idea to take milk products though. Lw, it seems that your symptoms are related to the production of gas. Do what you can to lower the gas. Find out what food is NOT causing gas. For me it helps to minimize gas after a meal when taking five drops of oregano oil in a table spoon of olive oil. I take it 2-5 times a day when I have much gas. Sugar and non resistent starch are causing gas here. Its for example better when I eat a cold potatoe cooked yesterday. Sweet potatoes always cause gas, so does bread, less with those without gluten. I'm sensitive to some of the FODMAP. Blueberries cause gas, but not rasperries.
On POIS we might be subjected to a lower production of bile or lack something that normally have a negative impact on the bacteria in the upper small intestine. There should not be so much bacteria there. Maybe the presence of gas and loads of bacteria are inhibiting the uptake of fat soluble vitamins in the small intestine and/or leaks substances to the blood that impacts the liver.
I've started to drink much more water during POIS day 1-3 and take antioxidants/vitamin C/omega 3 to ease the burden on the liver by diuting the blood and protect cells from free radical damage. Goats has a production of vitamin C of 40-100 grams a day and we dont produce any of it, we have to eat it. Perhaps a bile supplement would be a good additon to the oregano oil during the POIS state to reduce gas.
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I did a spit cortisol test (well, actually several, with sending in to a lab). This was out of POIS state as my belief is that POIS is just a manifestation of underlying other health issues. POIS as a symptom not a cause.
While the test results say I have normal values for all measurement points, for me the graph at least a bit confirms that I have energy issues related to low cortisol and maybe explains why I have good results with adaptogens/nootropics. (I have lows at ~11 and ~17 o'clock, but sometimes they are also related to bowel movements (https://poiscenter.com/forums/index.php?topic=3293.0))
Picture attached.
Related threads:
https://poiscenter.com/forums/index.php?topic=3687
https://poiscenter.com/forums/index.php?topic=3011
hello, it seem that your cortisol is on the normbereich, so POIS is not caused by cortisol problem?
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I belive its the other way around - chronic high level if cortisol (not necessarily extremely hight, but long term in the upper normal) is caused by POIS. Cortisol is always excreted by the adrenals when there is an inflammation in the body. Cortisol by itself does not cause inflammation, but lowers inflammation. The inflammation comes first, then cortisol. Without enough cortisol, the consequences of POIS would probably be much worse. Without cortisol you would probably be dead in 24 hours. Long term cortisol not only put stress on the body and put the body in a degenerative state, but also takes resources from other hormones that are very important for the inflammatory system to work.
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I'm still on POIS. My gastroenterologist prescribed diarrhea inducing meds (for gas), during the week POIS was unbelievably unnoticeable, I was full of energy. After 1 week I started to feel worse. Gas came back, dysbacteriosis made worse. He added Rifaximin and some probiotics. I'll start the medications tomorrow and update you.
I feel very ill.
hey lw, how about you recently? What is the situation of your POIS after a month of antibiotic and probiotics
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Comment from Lihua moved here, was in the "no-comment" results thread:
Just got my 43 pages microbiom report from smartDNAglobal in Australia. They have tested 10 000 bacteria. Just showing values of interest that is off the normal intervals. Here's a short summary. Red color is over reference, blue is under. I might add some values later. My therapist has a very good hope that fixing theese issues (that might take six months) will improve POIS.
Classification rate by phylum (bacteria main class) level:
Firmicutes: 66,8%
Bacteriodetes: 16,62%
Proteobacteria: 5,61%
Actinobacteria: 5,03%
Synergistetes: 0,00%
Tenericutes: 0,32%
Cyanobacteria: 0,65%
Lentisphaerae: 0,23%
Verrycomicrobia: 0,01%
Fusobacteria: 0,03%
TM7: 0,00%
Other bacteria: 2,69%
Details:
Firmicutum phylum
Clostridiumbolteae: not detected
Faecalibacterium prausnitzi: 0,883%
Roseburiaintestinalis: 0,472%
Bacteroides phylum
Bacteroides vulgatus: not detected
Odoribacter spp: not detected
Actinobacteria phylum
Bifodobacterium animalis: not detected
Bifodobacterium bifidum: not detected
Bifodobacterium breve: not detected
Bifodobacterium infantis: not detected
Bifodobacterium longum: not detected
Collinsella aerofaciens: not detected
Fusobacterium Phylum
(all seven strains not detected)
Advanced microbial insight
Butyrate producers (butyric acid, good for intestines): 10,15% (>13,41%)
Succinate metabolism: 17,6,3% (>24,934%)
Beta-clucuronidase producing (important for phase II liver detoxification): 1,67% (6,46%)
Oxelate degrading (shoul de hight, beneficial for kidney health): 0,002% (>0,004%)
Faecallibacterium prausnitzii (has an anti-inflammatory effect of the gastro-intestinal tract): 0,883% (>4,198%)
Akkermansia mucinophila (maintaining a healthy balance between mucus lining utilisation and breakdown): 0,005% (>0,006%)
Ruminococcus bromii (breaking down resistant starch so other bacteria can utilise butyrate which is important for health gut function): 0,075% (>0,082%)
Cobalamin B12 (small intestine sis the sole site of absorption): not detected
Biotin B7: not detected
GABA consumers: 0,8% (<0,7%)
Indolipropionic acid (antioxidant, important for protecting nerve cells): not detected
BCAA (important for building muscles and regulation of fat and sugar metabolism): not detected
LPS inflammation (inflammation promoting molecule that can cross the blood barrier of the intestine causing heart disease, autoimmune diseas non alcoholic fatty liver and type 2 diabetes: 1,395% (<0,721%)
Other
Caffeine metabolism (I should cut down coffeine coffee): <0,001 (0,00001-0,0113)
Stereoid biosynthetis: <0,001 (0,0006-0,0343)
Hi bro, did you do something for your abnormal intestinal flora? what is the result and what have you done?
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Hi bro, did you do something for your abnormal intestinal flora? what is the result and what have you done?
I'm directing my protocols to the flora now. First I took a 10 day antibiotic Rifaximin (sold under the brand name Xifaxan) to kill off the bad bactteria. I didnt notice any diffrence righth after, but later I had a better period. Then it got worse again, but I think its because had too much sugar in the diet. Now I'm about to start a anti-SIBO plan with many supplenments and dietary changes. I will report how that will turn out! One thing seems to be clear. When I have much gas the symptoms becomes much worse for a longer period. Just by avoiding gas producing foods symptoms might be very good.
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Another lucky POISer cured by antibiotics!
H pyl.. diagnosed, antibiotics cleared hidden infection
in his body I suppose
https://www.reddit.com/r/POIS/comments/v7eyva/pois_im_cured_this_is_my_story_hope_it_can_help/
Interesting! I think Clarithromycin is one of the only antibiotics I haven’t tried - I used pylera to clear my h pylori. Might be worth a shot.
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Another lucky POISer cured by antibiotics!
H pyl.. diagnosed, antibiotics cleared hidden infection
in his body I suppose
https://www.reddit.com/r/POIS/comments/v7eyva/pois_im_cured_this_is_my_story_hope_it_can_help/
Interesting.
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Low vit D (https://poiscenter.com/forums/index.php?topic=2684.msg43911#msg43911), high WBC count (https://poiscenter.com/forums/index.php?topic=4104.msg44956#msg44956) in prostatic fluid and response to methylprednisone and celebrex (https://poiscenter.com/forums/index.php?topic=4104.msg44817#msg44817). Is there a correlation between these? If so can we define a subgroup of POIS? What type of WBC is dominant? He got the diagnosis prostatitis. In this case IL-8 (in semen) could be investigated because it’s being discussed as marker for prostatitis (https://sci-hub.se/10.1016/j.jri.2013.02.004) (MC mediator, neutrophil chemotactic factor, hypersensitivity type4d).
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Username: PoisMen2036
https://www.reddit.com/r/POIS/comments/vo8adt/hormonal_profile_of_pois/
(https://preview.redd.it/kon1uljwer891.jpg?width=640&crop=smart&auto=webp&s=3b973bb0811d323d6b8dc27168f0baa384494c81)
Fast, Male, born in 1981. Age? POIS state?
Values in ng/ml:
17-hydroxyprogesterone: 1.40 (<1.39)
21-deoxycortisol: 0.03 (0.00-0.68)
Androstenedione: 1.15 (0.23-0.89)
Dihydroandrosterone: 7.96 (0.63-4.70)
Deoxycorticosterone: 0.09 (0.00-0.19)
Cortisol: 202.7 (46-206)
Cortisone: 39.8 (12-35)
Corticosterone: 10.03 (1.30-8.20)
Progesterone: 0.19 (<0.11)
Testosterone: 4.89 (3.00-8.90)
11-Deoxycortisol: 0.94 (0.00-0.59)
17-OH-Pregnenolone: 6.15 (0.00-4.42)
No time for resarch, what those abnormalitys meaning?
Tumor on adrenal glands???( i did so before that some
poisers hawe disorders on glands).
Kongenital?
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Seems to me that hight cortisol is a common denominator amongst the test results. The body is doing what it can to battle the inflammation and cortisol has to be as high as needed, even if it shoots out of range - If not it might be even worse. So eat the raw materials to build cortisol (eggs, cholesterol, B-vitamins) while fighting the POIS root cause. But eating an antiinflammatory diet might relieve the body from producing hight cortisol all the time and long term high cortisol has terrible side effects for the body. I'm still in a battle with my SIBO/leaky gut. Each little dietary misstake I make ruins my life. So does O, as the inflammation messes up the intestinal function.
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Two poisers find bacteria in theirs semen culture tests:
https://www.reddit.com/r/POIS/comments/xgi5wb/results_of_my_semen_culture_test/
https://www.reddit.com/r/POIS/comments/w4sdo5/testing_semen/
Escherichia coli
Enterococcus faecalis
https://en.wikipedia.org/wiki/Enterococcus_faecalis
E. faecalis contains a tyrosine decarboxylase enzyme capable of decarboxylating L-dopa, a crucial drug in the treatment of Parkinson's disease. If L-dopa is decarboxylated in the gut microbiome, it cannot pass through the blood-brain barrier and be decarboxylated in the brain to become dopamine.
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I wonder how those poisers get bacteria in theirs semen?
Bad root chanels??? Leaky gut??
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Two poisers find bacteria in theirs semen culture tests:
https://www.reddit.com/r/POIS/comments/xgi5wb/results_of_my_semen_culture_test/
https://www.reddit.com/r/POIS/comments/w4sdo5/testing_semen/
Escherichia coli
Enterococcus faecalis
https://en.wikipedia.org/wiki/Enterococcus_faecalis
E. faecalis contains a tyrosine decarboxylase enzyme capable of decarboxylating L-dopa, a crucial drug in the treatment of Parkinson's disease. If L-dopa is decarboxylated in the gut microbiome, it cannot pass through the blood-brain barrier and be decarboxylated in the brain to become dopamine.
Catuaba bark has antimicrobial activity against both species. It may also increase serotonin, dopamine and acetylcholine. Catuaba may decrease fatigue and have an antidepressant effect. It can improve libido, but of course some of us would rather avoid this. Nevertheless some members may find great relief with it just as I did.
https://mybiohack.com/blog/catuaba-trichilia-catigua-erythroxylum
By the way Triphala is also effective against Enterococcus faecalis in a chronic periodontitis setting.
https://www.liebertpub.com/doi/pdfplus/10.1089/acm.2017.0083
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For what it's worth... Fluoroquinolones were a successful bet against my own prostatic infection. Beta-lactamines weren't sufficient. The prostate is notoriously difficult to reach and treat.
New sperm culture. This time, no bacteria was found. It looks like the fluoroquinolones worked.
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So finally I managed to visit the local Endocrinologist. I hoped that with some evidence they are finally going to listen to me, but it was rather in vain. They did not even want to listen to any of my experiences with supplements or any theories pertaining to them. The doctor explicitly stated that they aren't going to prescribe any kind of medication unless it was justified by some tests even if they were effective for other patients. So I begged for some hormonal tests and at least they were willing to do some that they thought could be informative. "Unfortunately" I was not expecting a blood test right away and I was feeling quite alright as I had the last O about two weeks before. I still had some symptoms like photophobia at the time, but it wasn't the most representative state for acute POIS. As a reference I was on Chaga supplementation and even took some in the morning when this happened if it matters anything.
So here are the results:
sTSH: 2.300 mU/L (0.300-4.200)
Total calcium: 2.47 mmol/L (2.10-2.60)
Phosphate: 0.86 mmol/L (0.8-1.45)
Glucose: 5.5 mmol/L (3.6-6.0)
IgF1: 138.8 ug/L (107.8-246.7)
17 beta-Estradiol: 45.80 ng/L (7.6-42.6)
FSH: 3.91 IU/L (1.5-12.4)
LH: 4.88 IU/L (1.7-8.6)
PRL: 6.14 ug/L (4.1-21.4)
Testosterone: 22.160 nmol/L (9.90-27.80)
SHBG: 48.29 nmol/L (11.4-52.3)
DHEAS: 7.150 umol/L (2.400-11.500)
The doctor's advice sent with the letter says that the results are completely fine and no intervention is required. Well I can't say I was too surprised as I somewhat expected mostly normal results anyway. At least it is interesting that I had a slightly elevated E2 level which may explain why I had success with several aromatase inhibitors and could be indicative of a suspected estrogen dominance. Of course I have been non-stop trying new supplements and it can't be excluded that a higher E2 is the result of some of the stuff I took earlier, although it is also true that I was testing DHEA about 2 weeks before and it doesn't appear in the test. Testosterone is actually somewhat above average, but still testosterone boosters help me. It may be nothing, but still worth mentioning that phosphate is closer to the lower limit, while SHBG to the upper reference limit. At least these values are representative for my baseline CFS state, but in the future I plan to make a more representative test in acute POIS with some other hormones included like DHT, progesterone and cortisol even if this time I have to pay for it as doctors are not likely to help me any more.
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…I managed to visit the local Endocrinologist…
Progecitor…One thing seemed to help me: when I visited this university endocrinologist…
A famous Harvard biophysicist - - who was once a classmate of mine - - recommended to me that a
university-based endocrinologist might be a better choice for me/POIS, because POIS is not well known and experimental treatments might be better tolerated in a university environment vs a more traditional medical practice;
University-affiliated doctors might be willing to be more *experimental* with POIS vs more traditional docs.
I found that to be true and stuck with this endocrinologist for years until he moved out-of-state.
To this day, 12 years later, I continue to work with university-based endocrinologists for my POIS.
Even if your choice of a POIS doctor is not endocrinology, you may wish to consider a university-affiliated orientation for your selection of primary care and/or specialized medical practitioner.
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…I managed to visit the local Endocrinologist. I hoped that with some evidence they are finally going to listen to me, but it was rather in vain. They did not even want to listen to any of my experiences…
Progecitor, I had the exact same frustrating experiences.
One thing seemed to help me: when I visited this one university endocrinologist 12 years ago, I showed him the 2002 POIS article - - the very first one that introduced the concept & name of “POIS” - - written by Dr Marcel Waldinger.
I pointed out to him that
Dr Waldinger’s co-author is an endocrinologist!
POIS Research Study 2002
Dr. Dave H. Schweitzer
Dr. Dave H. Schweitzer, co-author of the original 2002 POIS Study with Dr. Marcel Waldinger, who is also in touch with our forum here, since 1994 is an internist-endocrinologist in Reinier de Graaf Groep, Netherlands. His interest is mainly in hormonal diseases and diseases of the metabolism. He does research on the endocrinology of sexuality and seriously overweight. His work is published in international journals.
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Guys what do you think about my TSH results ?
(http://326545356_875787150313395_5044715415337845500_n.png)
Your TSH is very high, test antibodies and reverse T3 - you may need Thyroid medicine
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Semen analysis (took 2 covid vaccins almost 2 years ago):
https://www.reddit.com/r/POIS/comments/11lbhz5/i_just_got_my_semen_analysis_report_and_they_dont/
Click on picture to enlarge:
(https://i.redd.it/5kqvqlv1cfma1.jpg)
This is an interesting finding. There are some information that could be pertaining to this condition.
Some factors that could be involved in lower sperm motility:
In the sexually mature male (MS) macaques, various spermiogenesis-related DEGs were identified, including TSSK2, HSP90AA1, SOX5, SPAG16, and SPATC1. Testis-specific serine/threonine kinase 2 (TSSK2), which is expressed exclusively in spermatids, is a member of the TSSK family and plays an essential role in male fertility. Double knockout of TSSK1/TSSK2 results in abnormal sperm development in mice. Heat shock protein 90 (HSP90) is a key factor affecting post-meiotic differentiation of mammalian sperm. Targeted disruption of the HSP90AA1 gene can lead to male infertility in mice. Furthermore, HSP90 can prevent ubiquitination and degradation of TSSKs and is critical for their activation. Sperm-associated antigen 16 L (SPAG16L), a major transcript isoform of SPAG16, encodes proteins related to cilia/flagella formation and motility. SPAG16L deficiency can lead to male infertility, associated with impaired sperm motility. Short SRY-box transcription factor 5 (S-SOX5), a form of SOX5 transcript, is expressed in post-meiotic round spermatids. S-SOX5 may participate in the formation of motile cilia/flagella via activating SPAG16L. Similarly, down-regulation of the spermatogenesis and centriole associated 1 (SPATC1) gene can reduce sperm fertility, although the exact function of SPATC1 is unknown. Thus, the up-regulation of these DGEs (TSSK2, HSP90AA1, SOX5, SPAG16, and SPATC1) in our study suggests that MS macaques have better sperm fertility, an important criterion of sexual maturity.
https://assets.researchsquare.com/files/rs-2229246/v1/ee4313ff-53e4-44fb-8447-66b357e09d65.pdf?c=1668543014
In our experiments, estradiol (E2) induced sperm motility at 1 and 10 nM, after then it significantly decreased at 1mM, showing a biphasic effect. The massive presence of ERbeta in the flagellum may indicate an important role in the sperm motility.
https://www.researchgate.net/profile/Stefania-Marsico/publication/49857930_Human_sperm_physiology_Estrogen_receptor_alpha_ERa_and_estrogen_receptor_beta_ERb_influence_sperm_metabolism_and_may_be_involved_in_the_pathophysiology_of_varicocele-associated_male_infertility/links/5cdd31f6299bf14d959cecdc/Human-sperm-physiology-Estrogen-receptor-alpha-ERa-and-estrogen-receptor-beta-ERb-influence-sperm-metabolism-and-may-be-involved-in-the-pathophysiology-of-varicocele-associated-male-infertility.pdf
When the testis-torsioned rats were given ERbeta agonist during the detorsion period, tubular injury was lessened, sperm count and motility were increased, while the production of reactive oxygen metabolites and apoptosis in the testis tissues were totally suppressed. Although a down-regulated expression of androgen receptor (AR) along with a reduction in serum testosterone level was observed in the vehicle-treated T/D group, all three treatments up-regulated the expressions of AR and its mRNA, while ERalpha agonist and E2 suppressed the testosterone level.
https://www.sciencedirect.com/science/article/abs/pii/S0024320519301468
Similarly calcium is required for the normal spermatogenesis and for normal sperm motility and fertilization. Therefore, therapeutic administration of Calcium channel blockers (CCBs) has been correlated with iatrogenic male infertility. This infertility may be due to decreased testosterone production, suppression of spermatogenesis or decrease in sperm motility. Any agent that may increase testosterone production and spermatogenesis can be helpful for enhancing fertility in patients taking CCBs.
http://www.pps.org.pk/PJP/15-4/Sidra.pdf
Higher levels of endocannabinoids appeared to be linked to low sperm motility, and to a decrease in the percentage of motile and progressive cells. The negative effect of AEA on sperm motility could be exerted directly on the sperm cells via an intracrine activation of the CB1 receptor present on the sperm membrane, which could reduce the mitochondrial activity, the principal source of energy for the motile sperm cell.
https://onlinelibrary.wiley.com/doi/full/10.1111/andr.12785
An inverse relationship between sperm motility and AEA concentrations in seminal fluid and OEA levels in blood serum has been found; conversely, PEA levels in semen were positively linked to sperm concentration, whereas in seminal fluid the levels of OEA and PEA, that exhibit antioxidants properties, were associated with better sperm morphology.
https://www.mdpi.com/1422-0067/22/2/972/htm
Mumps orchitis typically resolves within two weeks. In 20% of cases, the testicles may be tender for a few more weeks. Atrophy, or reduction of size, of the involved testicle occurs in 30–50% of orchitis cases, which may lead to abnormalities in sperm creation and fertility such as low sperm count, absence of sperm in semen, reduced sperm motility, reduced fertility (hypofertility) in 13% of cases, and rarely sterility. Hypofertility can, however, occur in cases without atrophy. Abnormalities in sperm creation can persist for months to years after recovery from the initial infection, the length of which increases as the severity of orchitis increases. There is a weak association between orchitis and later development of epididymitis and testicular tumors.
https://en.wikipedia.org/wiki/Mumps
Some evidence based ways to increase sperm motility:
- saffron
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6277668/
- Masculine (asafoetida)
https://benthamopen.com/contents/pdf/TOALTMEDJ/TOALTMEDJ-1-102.pdf
- Ruta chalepensis leaves
- Shengjing pill
- Croton zambesicus
- Korean ginseng (P. ginseng)
- Nigella sativa oil
- Phoenix dactylifera date palm pollen
- pomegranate (Punica granatum)
- Astragalus membranaceus and Acanthopanacis senticosi
- Decoctions of Semen cuscutae, Rhizoma curculiginis and Radix morindae officinalis
- L. meyenii (Maca)
- Speman (a formulation of several medicinal plants)
- T. terrestris, Asparagus recemosus and Withania somniferea
- Kan Jan(TM) (mixture of Andrographis paniculata and Acanthopanax senticosus)
- Powder of Mucuna pruriens seeds
https://link.springer.com/content/pdf/10.1007/s12610-009-0030-2.pdf
- Shengjing capsules (ginseng, Cordyceps sinensis, Epimedium, and medlar)
https://www.hindawi.com/journals/ecam/2019/8494567/
- almond
- mixed nuts (walnuts, almonds and hazelnuts)
https://sci-hub.se/https://ift.onlinelibrary.wiley.com/doi/abs/10.1111/1541-4337.12752
- Brassica rapa, Prunus amygdalus and Zingiber officinale
https://www.worldscientific.com/doi/abs/10.1142/S0192415X89000103
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So finally I managed to visit the local Endocrinologist. I hoped that with some evidence they are finally going to listen to me, but it was rather in vain. They did not even want to listen to any of my experiences with supplements or any theories pertaining to them. The doctor explicitly stated that they aren't going to prescribe any kind of medication unless it was justified by some tests even if they were effective for other patients. So I begged for some hormonal tests and at least they were willing to do some that they thought could be informative. "Unfortunately" I was not expecting a blood test right away and I was feeling quite alright as I had the last O about two weeks before. I still had some symptoms like photophobia at the time, but it wasn't the most representative state for acute POIS. As a reference I was on Chaga supplementation and even took some in the morning when this happened if it matters anything.
So here are the results:
sTSH: 2.300 mU/L (0.300-4.200)
Total calcium: 2.47 mmol/L (2.10-2.60)
Phosphate: 0.86 mmol/L (0.8-1.45)
Glucose: 5.5 mmol/L (3.6-6.0)
IgF1: 138.8 ug/L (107.8-246.7)
17 beta-Estradiol: 45.80 ng/L (7.6-42.6)
FSH: 3.91 IU/L (1.5-12.4)
LH: 4.88 IU/L (1.7-8.6)
PRL: 6.14 ug/L (4.1-21.4)
Testosterone: 22.160 nmol/L (9.90-27.80)
SHBG: 48.29 nmol/L (11.4-52.3)
DHEAS: 7.150 umol/L (2.400-11.500)
The doctor's advice sent with the letter says that the results are completely fine and no intervention is required. Well I can't say I was too surprised as I somewhat expected mostly normal results anyway. At least it is interesting that I had a slightly elevated E2 level which may explain why I had success with several aromatase inhibitors and could be indicative of a suspected estrogen dominance. Of course I have been non-stop trying new supplements and it can't be excluded that a higher E2 is the result of some of the stuff I took earlier, although it is also true that I was testing DHEA about 2 weeks before and it doesn't appear in the test. Testosterone is actually somewhat above average, but still testosterone boosters help me. It may be nothing, but still worth mentioning that phosphate is closer to the lower limit, while SHBG to the upper reference limit. At least these values are representative for my baseline CFS state, but in the future I plan to make a more representative test in acute POIS with some other hormones included like DHT, progesterone and cortisol even if this time I have to pay for it as doctors are not likely to help me any more.
Did you mention POIS specifically to the doctor or show the research papers? What did he think of it
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So finally I managed to visit the local Endocrinologist. I hoped that with some evidence they are finally going to listen to me, but it was rather in vain. They did not even want to listen to any of my experiences with supplements or any theories pertaining to them. The doctor explicitly stated that they aren't going to prescribe any kind of medication unless it was justified by some tests even if they were effective for other patients. So I begged for some hormonal tests and at least they were willing to do some that they thought could be informative. "Unfortunately" I was not expecting a blood test right away and I was feeling quite alright as I had the last O about two weeks before. I still had some symptoms like photophobia at the time, but it wasn't the most representative state for acute POIS. As a reference I was on Chaga supplementation and even took some in the morning when this happened if it matters anything.
So here are the results:
sTSH: 2.300 mU/L (0.300-4.200)
Total calcium: 2.47 mmol/L (2.10-2.60)
Phosphate: 0.86 mmol/L (0.8-1.45)
Glucose: 5.5 mmol/L (3.6-6.0)
IgF1: 138.8 ug/L (107.8-246.7)
17 beta-Estradiol: 45.80 ng/L (7.6-42.6)
FSH: 3.91 IU/L (1.5-12.4)
LH: 4.88 IU/L (1.7-8.6)
PRL: 6.14 ug/L (4.1-21.4)
Testosterone: 22.160 nmol/L (9.90-27.80)
SHBG: 48.29 nmol/L (11.4-52.3)
DHEAS: 7.150 umol/L (2.400-11.500)
The doctor's advice sent with the letter says that the results are completely fine and no intervention is required. Well I can't say I was too surprised as I somewhat expected mostly normal results anyway. At least it is interesting that I had a slightly elevated E2 level which may explain why I had success with several aromatase inhibitors and could be indicative of a suspected estrogen dominance. Of course I have been non-stop trying new supplements and it can't be excluded that a higher E2 is the result of some of the stuff I took earlier, although it is also true that I was testing DHEA about 2 weeks before and it doesn't appear in the test. Testosterone is actually somewhat above average, but still testosterone boosters help me. It may be nothing, but still worth mentioning that phosphate is closer to the lower limit, while SHBG to the upper reference limit. At least these values are representative for my baseline CFS state, but in the future I plan to make a more representative test in acute POIS with some other hormones included like DHT, progesterone and cortisol even if this time I have to pay for it as doctors are not likely to help me any more.
Did you mention POIS specifically to the doctor or show the research papers? What did he think of it
At the Endocrinology it was a female doctor not like it matters much. Yeah, it was the first thing I mentioned, but as I remember she did not reflect on it. Actually it could have been partly my fault as well as I quickly tried to swerve the direction of the matter by kind of lying that it must be a hormonal issue. Patients only have a few minutes to discuss their problems and it would have been impossible to sum up POIS in any coherent way in such a short amount of time. I was also rather afraid that they would block any of my inquiry as it happened at the Rare Disease department where the male professor figuring out that POIS was an andrological disease would refuse to hear anything I had to say or to discuss the issue at any length. At the Andrology I had to wait in line with a lot of mostly old patients some of who could hardly stand and probably many of them had prostate cancer, so my problems felt rather insignificant compared to them. The doctor was also exhausted and it was clear that this issue is beyond the capacity they can handle. Actually I have just been to my GP last week to show her the letter after several months, but as expected she said it looks fine and there is nothing to do about it. I did not even argue as I rather wanted to report on my current findings. I also showed her the list of supplements that I had used with great success and a short list of drugs that I would really like to test based on this. I know that she is not allowed to prescribe them so I did not force the issue, but rather told her my current theory about senescence and how I will soon attempt to cure my disease. She was at least supportive and told me she is glad that I do so much to try to resolve my issues.
Currently there are at least two other choices I could pursue. I could finally go and see the POIS doctor at the capital, but I am just so damn reluctant about it as it is outside my comfort zone. Or I could go back to the local Psychiatry after several years of hiatus and see if they are willing to prescribe me at least some of the drugs that interest me like lorazepam. At least I could finally tell them that I am not a schizophrenic. Unfortunately as my previous doctor no longer practices I would have to first explain them how I was a schizophrenic before which just feels so stupid.
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FYI, I also took a semen analysis (Spermiogramm in German) for unrelated issues..
I did not fetch the actual result paper, but the doctor said it looks "very good".
(I'm currently taking beef liver capsules and a male fertility supplement that contains A, C, E, D, B vitamins, zinc, selenium, copper and lycopene..sometimes I take fenugreek or Maca or tribulus)
(My pet theory is that everything that helps for "muscle building", "testosterone", "male sexual stamina", "male fertility" also helps POISers)
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…(My pet theory is that everything that helps for "muscle building", "testosterone", "male sexual stamina", "male fertility" also helps POISers).
Berlin, I agree.
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I have some very interesting results to share.
I did a CBC after 11 days of abstinence. Right after the test was done, in the evening, I released twice. In the morning, I went to do another CBC. (Ordered both tests privately).
For many years I have had low neutrophils.
In the first CBC, my neutrophil count was 3.6. In the second CBC, taken the morning after 2 releases, my neutrophils were 2.1. This change literally happened in under 24 hours. I am currently not sick at all. This sudden and significant change in neutrophils are most likely caused by POIS.
Going to bring this experiment & result up with my functional med doc next time I see him.
Here are the results:
22/12/2022 2:50pm
https://gyazo.com/636415511d8fb29b7dac4104a63b3f48
Neutrophils 3.6
23/12/2022 8am
https://gyazo.com/abda0a1a284d88c8917f2d7d2fcc00ab
Neutrophils 2.1
I also have many blood tests dating back to 2020 with consistently low neutrophils, always around 1.8. I believe that my POIS solution has reduced the time my body is in the POIS state, and therefore gives my body a greater chance to get neutrophil ranges back to normal (hence 3.6 result after 11 days of abstience).
Also, the display of results between both days are different because I went to different pathologists (one I normally go to was closed).
Type IVd hypersensitvity is categorized as CD3+CD4+ and CD3+CD8+ T-cells which attract neutrophils mainly via GM-CSF and IL-8. The attraction works by gradients of these chemokines leading to sterile neutrophilic inflammation. Do neutrophil levels decrease due to extravasation? I've asked this to ChatGPT:
Question: What if neutrophils infiltrate tissue, is it possible it can lower neutrophils levels in blood?
Answer:
Yes, it is possible for neutrophil levels in the blood to decrease when they infiltrate tissues. Neutrophils are a type of white blood cell that plays a crucial role in the innate immune response. When an inflammatory process occurs, such as infection or tissue injury, neutrophils are recruited from the blood vessels to the site of inflammation or injury.
During inflammation, several factors guide neutrophils to migrate out of the blood vessels and into the affected tissues. This process is called extravasation. Once in the tissues, neutrophils can carry out their functions, including phagocytosis of pathogens and release of antimicrobial substances.
As neutrophils leave the bloodstream and migrate into tissues, their levels in the blood can decrease. This is because they are actively being recruited to the site of inflammation and are no longer circulating in the bloodstream. The movement of neutrophils from the blood vessels to the tissues is a tightly regulated process involving adhesion molecules, chemokines, and other signaling molecules.
It's worth noting that the decrease in neutrophil levels in the blood due to tissue infiltration is usually temporary. The bone marrow continuously produces new neutrophils to replenish the circulating pool. Once the inflammatory response subsides, the balance between neutrophil recruitment to tissues and their release from the bone marrow is restored, leading to a return to normal neutrophil levels in the blood.
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August 23 2023: POST-ORGASMIC ILLNESS SYNDROME SUCCESSFULLY TREATED WITH OMALIZUMAB (https://www.youtube.com/watch?v=sdPt7NwEO4I) (T J)
Use a youtube downloader to download and watch the video.
NSAIDs, high dose antihistamine therapy and SSRIs were considered ineffective.
Treatment: 3 months of therapy with 300 mg Omalizumab every 4 weeks. Patient had improvement of symptoms 3 days after start of therapy. I will add this to the pois paper treatment thread.
https://en.wikipedia.org/wiki/Omalizumab#Mechanism_of_action
Member poisioq - elevated prolactin(elevated prolactin could be the couse of
hypogonadism in poisers),
Hi ige , igf1....-(indicate posible parasitic infection, alergic reactions....
Intresting, member reporting that in fasting periods he get rid of pois...
That olso lead me to xoliar indicated to alergic asthma and mcas patients...
UPDATE 5#
Since my last update I had 2 blood test. In both of them prolactin resulted into the limits.
But for my last blood test my doctor requested also 2 unusal things: IGF-1 and IgE, that both came up above their normal ranges:
IgE 562,00 UI/mL (<120,00)
IGF-1 279,80 ng/mL (96,40 - 227,80)
Update #2
After 2 months on Cabergoline I had another blood test. Now prolactine is in the range: 13 ng/mL [3.5 - 19.4].
In my last 2 analysis it was 55.9 and 41.5 ng/mL.
My observation from 2019:
High ige , igf1....-(indicate posible parasitic infection, alergic reactions....
Intresting, member reporting that in fasting periods he get rid of pois...
That olso lead me to xoliar indicated to alergic asthma and mcas patients...
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Has anyone done an Omega-3 blood test? Many discussions about fatty acids but what are the levels in POISers?
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Guys tomorrow I'll have to do some blood tests, Does it make sense to do them in a state of pois? for me yes, in fact I think I'll masturbate today, I have the analysis tomorrow morning
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What could be the consequence of having a low secretory IgA?
https://www.perplexity.ai/search/what-could-be-the-consequence-fDqJZmnGTfOiQmPMG.CZYQ
Low secretory IgA (sIgA) levels can have several significant consequences for an individual's health, primarily affecting the immune system and mucosal surfaces. Here are the key implications:
## Increased Susceptibility to Infections
Low sIgA levels weaken the body's first line of defense against pathogens, particularly at mucosal surfaces like the respiratory tract, gastrointestinal system, and urogenital tract[1]. This can lead to:
- Frequent colds and sinus infections
- Recurrent respiratory infections
- Increased risk of gastrointestinal infections
## Digestive Issues
The gastrointestinal tract is particularly vulnerable when sIgA levels are low, potentially resulting in:
- Irritable Bowel Syndrome (IBS) symptoms
- Inflammatory Bowel Disease (IBD)
- Increased intestinal permeability ("leaky gut")
- Overgrowth of harmful bacteria, dysbiosis, and potential parasitic infections[2]
## Autoimmune and Inflammatory Conditions
Low sIgA can contribute to the development or exacerbation of autoimmune and inflammatory conditions:
- Higher risk of developing autoimmune diseases
- Skin problems such as acne or eczema
- Allergies and food sensitivities[3]
## Impaired Nutrient Absorption
The compromised gut barrier function associated with low sIgA can lead to:
- Malabsorption of nutrients
- Increased risk of nutrient deficiencies
- Potential for weight loss or malnutrition in severe cases
## Chronic Fatigue and Reduced Overall Health
The ongoing stress on the immune system can result in:
- Persistent fatigue and exhaustion
- Adrenal fatigue
- Generally lowered immune function[4]
## Increased Food Sensitivities
Low sIgA levels can make individuals more prone to developing food sensitivities, as the weakened mucosal barrier allows larger food particles to enter the bloodstream, potentially triggering immune responses[3].
To address low sIgA levels, it's crucial to identify and address the underlying causes, which may include chronic stress, poor diet, nutrient deficiencies, or chronic infections. Implementing stress management techniques, improving nutrition, and addressing any underlying health issues can help support and restore healthy sIgA levels[1][4].
Citations:
[1] https://www.rupahealth.com/post/secretory-iga-understanding-high-and-low-levels-causes-and-treatment-options
[2] https://sonyareynolds.com.au/secretory-iga/
[3] https://www.nutritionist-resource.org.uk/memberarticles/could-low-secretory-iga-be-the-driving-force-in-autoimmunity
[4] https://www.stevegranthealth.com/articles-posts/low-secretory-iga-siga-levels-causing-immune-digestive-issues/
[5] https://healthmatters.io/understand-blood-test-results/fecal-secretory-iga
[6] https://primaryimmune.org/understanding-primary-immunodeficiency/types-of-pi/selective-iga-deficiency
[7] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5422646/
[8] https://vitawell.com.au/the-meaning-of-low-secretory-iga-levels/
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I just had some more general blood tests which I have done twice a year.
There are consistent patterns with my out of range blood tests, the ones of interest as follows:-
low neutrophils
high bilirubin (Gilbert's Syndrome diagnosis)
high transferrin saturation
low blood glucose
high testosterone
low PTH
Regarding low neutrophils, seems to be common amongst poisers. In my case I link it with all the recurrent infections I get.
Regarding high bilirubin, Gilbert's seems to be common amongst poisers.
Regarding high transferrin saturation, I've had a gene test for hemochromatosis which was negative.
Regarding low blood glucose, maybe this is just due to it being a fasting blood test.
Regarding high testosterone, haha, very deceptive. I'm built like a noodle and have the libido of a Panda. Low/normal testosterone levels seems more common in poisers.
Regarding PTH, I don't know much about it. My phosphate and calcium (adjusted) levels were normal. Does anyone else have low parathyroid hormone (PTH)? @Demografx - I read low PTH can cause tingling fingers and when I read this I thought of a symptom you mentioned in a post somewhere. I realise tingling fingers could probably be 100 other things but I wondered if you'd ever had your PTH tested?
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I just had some more general blood tests which I have done twice a year.
There are consistent patterns with my out of range blood tests, the ones of interest as follows:-
low neutrophils
high bilirubin (Gilbert's Syndrome diagnosis)
high transferrin saturation
low blood glucose
high testosterone
low PTH
Regarding low neutrophils, seems to be common amongst poisers. In my case I link it with all the recurrent infections I get.
Regarding high bilirubin, Gilbert's seems to be common amongst poisers.
Regarding high transferrin saturation, I've had a gene test for hemochromatosis which was negative.
Regarding low blood glucose, maybe this is just due to it being a fasting blood test.
Regarding high testosterone, haha, very deceptive. I'm built like a noodle and have the libido of a Panda. Low/normal testosterone levels seems more common in poisers.
Regarding PTH, I don't know much about it. My phosphate and calcium (adjusted) levels were normal. Does anyone else have low parathyroid hormone (PTH)? @Demografx - I read low PTH can cause tingling fingers and when I read this I thought of a symptom you mentioned in a post somewhere. I realise tingling fingers could probably be 100 other things but I wondered if you'd ever had your PTH tested?
I have low neutrophils. Very common amongst POISers. These have improved substantially for me though as I've worked on my protocol.
Interesting that you have high transferrin. I'm the opposite.
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high transferrin saturation
...
Regarding high transferrin saturation, I've had a gene test for hemochromatosis which was negative.
Did you also measure ferritin?
What was your transferrin saturation?
Which genes were tested for hemochromatosis, can you say the exact results? You might have symptoms even with heterozygous mutations.
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My neutrophils are typically only just below normal (1.89 10⁹/L in the most recent test) and when I've shown results like that to my doctor in the past, he tends to shrug his shoulders. I think they need to be much lower for him to take an interest.
I couldn't see a poll on neutrophil count in this forum so I've started one. I think it's potentially a biomarker for a subgroup of poisers and therefore of interest.
Transferrin saturation was 75% (normal is 20.1 to 50%)
Transferrin was 2.04 (normal is 2.01 to 3.8 g/l)
Ferritin was 150.66 (normal is 20 to 300μg/l)
Iron was 40.1 (normal is 5.9 to 34.5 μmol/l)
In previous tests my iron and ferritin levels have been normal, transferrin saturation is consistently high.
Re the haemochromatosis gene test, I don't know I'm afraid. My GP called me with the results at a bad moment and all I took in was that they were negative. I will try to find out and let you know Berlin.
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I'm becoming increasingly interested in PTH. Google tells me that amongst other things, hypoparathyroidism can make you vitamin D deficient and can be connected with fungal infections ex/ candida infections. It could be a red herring and I've had quite a few of those with POIS research but I'm going to delve into this a bit more.
It would be very interesting to hear if anyone else on this forum has a low PTH level.
update (01/12/2025): The lab made an error with PTH. I had it re-tested by my general doctor and it was completely normal. The lab admitted the error. Therefore no link between pois and low PTH in my case.
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Hi Sisyphus,
Not definitive. Just an “FYI”
PerplexityAI on PTH and POIS:
https://www.perplexity.ai/search/low-pth-and-pois-4tqd8u6iQnSdFIn5w4tK5A
“Low levels of parathyroid hormone (PTH) can lead to hypoparathyroidism, a condition characterized by low calcium and high phosphorus levels in the blood. Symptoms include muscle cramps, twitching, and fatigue. Causes of hypoparathyroidism include surgical removal or damage to the parathyroid glands, autoimmune disorders, and genetic conditions. Treatment typically involves lifelong calcium and vitamin D supplementation to maintain normal mineral levels.
POIS (Post-Orgasmic Illness Syndrome) is unrelated to PTH. It is a condition where men experience flu-like symptoms after ejaculation. The causes of POIS are not well understood, and it is a rare condition.”
Above emphasis mine,
Demo
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high transferrin saturation
...
Regarding high transferrin saturation, I've had a gene test for hemochromatosis which was negative.
Did you also measure ferritin?
What was your transferrin saturation?
Which genes were tested for hemochromatosis, can you say the exact results? You might have symptoms even with heterozygous mutations.
I got the details about my gene test from my doctor. Actually, the gene test seems to be semi positve in that I'm a carrier but there's only one copy. It says:-
Analysis has detected one copy of the heterozygous HFE variant c.187C>Gp.(his63Asp). The c.845G>A p.(Cys282Tyr) sequence variant was not detected.
The result confirms that this patient is a carrier of the c.187C>Gp.(his63Asp) variant in the HFE gene. The diagnosis of the most common HFE-related HH is excluded. Other causes of iron overload should be considered.
Hi Berlin, See above and if you need more info, please send me a PM.
update (01/12/2025): See above regarding high transferrin saturation and further testing for haemochromatosis. I had speculated whether I could have haemochromatosis and whether this could be connected with my pois. My out of range blood tests had led to further investigation by my general doctor.
re-test results: This proved to be a false alarm. My iron and ferritin levels were completely normal in the re-test. My transferrin saturation also came down a lot to 52%. This means it's highly unlikely I have haemochromatosis. There is no connection with pois in my case. It remains unclear why my transferrin saturation was so high before but I'm not going to worry about that.
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Hi Sisyphus,
Not definitive. Just an “FYI”
PerplexityAI on PTH and POIS:
https://www.perplexity.ai/search/low-pth-and-pois-4tqd8u6iQnSdFIn5w4tK5A
“Low levels of parathyroid hormone (PTH) can lead to hypoparathyroidism, a condition characterized by low calcium and high phosphorus levels in the blood. Symptoms include muscle cramps, twitching, and fatigue. Causes of hypoparathyroidism include surgical removal or damage to the parathyroid glands, autoimmune disorders, and genetic conditions. Treatment typically involves lifelong calcium and vitamin D supplementation to maintain normal mineral levels.
POIS (Post-Orgasmic Illness Syndrome) is unrelated to PTH. It is a condition where men experience flu-like symptoms after ejaculation. The causes of POIS are not well understood, and it is a rare condition.”
Above emphasis mine,
Demo
Hi Demo
Thanks for getting back to me. Thanks for the info on PTH. I'm not surprised that AI does not connect PTH with POIS. It will probably be proven one day that there is no connection between the two but until then, I prefer to keep a completely open mind about my POIS including all theories, causes, symptoms, everything, including PTH, until more research is done.
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Sisyphus, thanks for your excellent perspective on waiting for POIS correlates to be proven/disproven. Scientifically!
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Sisyphus, thanks for your excellent perspective on waiting for POIS correlates to be proven/disproven. Scientifically!
You're welcome Demo. I'm fascinated by medical research (what I can understand of it!).
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My PTH was low in a blood test but the lab made an error!
I previously reported a consistent pattern of low PTH, previous bi-annual tests with the same lab were 2.0, 1.6, 0.4, 1.0 and had wondered if this could have any link with pois.
My general doctor had my PTH re-tested and it came back as 3.3 pmol/l which is normal (ref 1.6 to 6.9 pmol/l). This was only one week after the lab had given me a result of 1.0 therefore my general doctor said he doubted the lab's result was correct.
I contacted the lab in the past few days, they very quickly checked and have admitted an error. They've not yet commented on the previous PTH test results but I suspect those are unreliable too. I'm glad to know I have a normal PTH but it's made me wonder if this lab has made other errors.
I have left the post up but it doesn't look like I have low PTH after all so probably not of interest with pois after all.