Author Topic: Gather and Post Here Your Medical Tests Results - Discussion Thread  (Read 115865 times)

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #360 on: March 22, 2019, 07:19:03 PM »
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.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #361 on: March 22, 2019, 07:48:30 PM »
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.

nanna1

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #362 on: March 22, 2019, 11:53:26 PM »
Muon and Nas, have you thought about 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.
« Last Edit: March 23, 2019, 12:27:08 AM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #363 on: March 23, 2019, 09:30:49 AM »
Muon and Nas, have you thought about 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.

Muon

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #364 on: March 23, 2019, 10:33:36 AM »
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
''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. 
 
« Last Edit: March 23, 2019, 12:24:06 PM by Muon »

nanna1

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #365 on: March 23, 2019, 08:12:47 PM »
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). In fact almost everyone on earth has at least one of the 6 herpes infections (see Herpes prevalence). 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). 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 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 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!
-----------------
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). 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, 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!
« Last Edit: March 23, 2019, 09:00:55 PM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #366 on: March 23, 2019, 09:19:46 PM »
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). In fact almost everyone on earth has at least one of the 6 herpes infections (see Herpes prevalence).
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 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 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). 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, 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.

Hopeoneday

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #367 on: March 23, 2019, 09:31:41 PM »
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.
« Last Edit: March 23, 2019, 09:41:34 PM by Hopeoneday »
Dr-pois.

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #368 on: March 23, 2019, 09:38:55 PM »
Dexamethasone weakens the immune system yet it helps me. I think this directly debunks the compromised immune system, at least for my case.

nanna1

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #369 on: March 26, 2019, 06:39:18 PM »
  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). In fact almost everyone on earth has at least one of the 6 herpes infections (see Herpes prevalence).
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, 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). 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, while another person has Guillain-Barre Syndrome or vagus nerve palsy. All of these are rare diseases caused by common infections. Some people have POIS, but others have prostate cancer (Ref1, Ref2, Ref3).
  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).

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). 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)

(2) Patterns in the POISer data can be found here (POIS patterns post).

(3) Here are three case studies in humans for epinephrine and norepinephrine triggered illness due to viral shedding:
  In these cases, people who have compromised immune systems get sick whenever norepinephrine is released in their body. This is a neuroendocrine response 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:
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 and western blot 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) (N. Depreux, et al, 2018)

Here is a useful POIS literature review (post).
-----------------
  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)

Thanks for your great questions Nas! :D
« Last Edit: March 29, 2019, 03:19:31 PM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #370 on: March 27, 2019, 01:24:17 AM »
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?)
« Last Edit: March 27, 2019, 10:28:14 AM by fernab »

hurray

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #371 on: March 27, 2019, 09:43:14 AM »


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/

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #372 on: March 27, 2019, 10:22:09 AM »
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....

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #373 on: March 27, 2019, 04:48:11 PM »

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.
« Last Edit: March 27, 2019, 04:50:22 PM by Nas »

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #374 on: March 27, 2019, 04:51:21 PM »
Just the opposite, a bit low progesterone... And little bit high prolactine as it seems happens to many other poisers....

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #375 on: March 27, 2019, 04:56:49 PM »
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?

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #376 on: March 27, 2019, 04:59:54 PM »
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

fernab

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #377 on: March 27, 2019, 05:00:58 PM »
Don't remember if I tested it.... Have to check it....

Nas

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #378 on: March 27, 2019, 07:21:06 PM »
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.

nanna1

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Re: Gather and Post Here Your Medical Tests Results - Discussion Thread
« Reply #379 on: March 29, 2019, 11:20:28 AM »
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) and IgE (negative). Mast cell activation syndrome (MCAS) has been ruled out as a cause of POIS by POISer data (see post). 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: 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).

  (2) Anti-virals 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: 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). From my experience, pharmacological POIS relief requires COX-1, COX-2 and NF-kB inhibitors. The Betaherpesvirinae stack is basically a treatment-summary of what I have learned from the Ideas on Herpes Induced POIS. 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
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! :)
« Last Edit: March 30, 2019, 08:10:08 AM by nanna1 »
POIS clusters: 1,3,4,5,7
POIS criteria: 1,2,3,4,5
2 stacks that give me complete relief of POIS symptoms are listed here: POIS cure: theory & supplement stack
Find medical test: https://www.findlabtest.com/