Author Topic: Muon's Case  (Read 84838 times)

Muon

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« Reply #26 on: December 16, 2019, 06:00:32 PM »
I was unable to modify my thread. It turned out I needed more space. Comments were deleted. Some buffer space was added and I'm putting the comments back below.

Hi Muon,
Thanks for all this information that you share.

It is not uncommon among POIS sufferers to have other associated illnesses like those you mention.  Dr Waldinger have noted, in particular, the high prevalence of premature ejaculation in POIS sufferers.

I would like to mention that skin prick test with own semen is no longer considered a diagnostic test for POIS.  Waldinger himself have abandoned this approach.  There is also the Chinese study where many control subjects ( with no POIS) have tested positive with the auto-semen prick test, which prove that it cannot be used to detect or diagnose POIS.  So, we are still waiting for a test that could diagnose POIS, which for now can only be "diagnosed" with the 5 criteria of Dr Waldinger, based on clinical manifestation.

Thanks again for taking the time to post your data, even if you are restricted in energy, and take good care of yourself.  I hope you'll find soon some relief and raise your level of energy and quality of life.

wow I never read this thread till today and was frozen while reading.  Moun's your symptom match mine.  Thank you for sharing these links.  Not to badger you, but the link you posted: Impairment of microcirculation of the facial nerves catches my attention, talks about: Endothelin, which has potent vasoconstrictive effects, may contribute to the pathogenesis of the microcirculatory impairment that occurs in patients with Bell palsy, mainly by promoting secondary ischemia.  I dont follow since we POISers have low BP and Endothelin constrict vessels raising BP.  During POIS, I get severe burning in my Palsy areas, as if nerves are trying to fire up but unable to.  When I take vasodilatory things (specially a med, gabapentin) that burning sensation stops but I dont know if vasodilatory is the key or its something else the key that helps.  But I know that POIS creates a burning sensation also across all distal peripherals, like ankles, wrists, exact symptoms of Raynaud syndrome.

95% of my symptoms is same. Thanks for posting test results, it help us a lot for resarchcing.

Thank you for this information, I will get my leukocytes tested so I have a record of inflammation. Let us know how your bone markers beta-CTx and osteocalcin look.

Update: File Muon 5-1 N-Methylhistamine 24h is new.
Mast Cell Activation markers have been tested. Urine has been collected during 24h post ejaculation.
More info about the labtest: https://www.immqas.org.uk/TestItem.asp?id=575

Results for the other 3 parameters below will be received next week:

https://www.immqas.org.uk/TestItem.asp?id=182
https://www.immqas.org.uk/TestItem.asp?id=250
https://www.immqas.org.uk/TestItem.asp?id=184

I tested my interleukins and they looked normal. I believe a big part of my issues are "D-Lactic Acidosis" which can cause brain-fog and many other symptoms like burning sensations in limbs, perhaps you are suffering from the same issue.

I believe histamine intolerance and mast cell disorders are actually low DAO enzymes from gut dysbiosis. Try taking Bifidobacterium Infantis, it has fixed my histamine reaction.

I tested my interleukins and they looked normal.
Which ones?
I believe a big part of my issues are "D-Lactic Acidosis" which can cause brain-fog and many other symptoms like burning sensations in limbs, perhaps you are suffering from the same issue.
If you believe so, you could test for blood plasma D-lactate concentration.
I believe histamine intolerance and mast cell disorders are actually low DAO enzymes from gut dysbiosis.
The gut isn't the only source of DAO and DAO isn't the only enzyme that breaks down histamine. Mast cells could also be activated by different pathways due to gut dysbiosis like via Toll-like receptors. I already took these theories into account in the past and there is no way of proving it. I have tried DAO capsules and all kinds of probiotics strains which had 0 effect. There hasn't been a single medicine or supplement so far that had significant effect on my POIS symtoms. Aside from that, symptoms can disappear all by itself over time or reappear after a period of absence without taking medicine or supplements.
Try taking Bifidobacterium Infantis, it has fixed my histamine reaction.
What do you mean by histamine reaction?

I have uploaded heart rate and blood pressure measurements. You can find them over here. 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.

Something else, I had painfully stiff muscles due to POIS a week ago. The higher part of the back, shoulders and part of the upper arms were affected, the weird thing was it kept getting stiffer and stiffer up to the point I could barely move my right arm, it was that painful (there was only pain present during movement, not in rest). Moving my arm/shoulder, was like the feeling of almost tearing some muscles. I slept one night with clothes on because undressing was too painful. Quite a weird event, I have never experienced this intensity of stiffness before.

I have uploaded the results of the prostaglandin D2 metabolites. It's file 5-3, click here.

A certain area of my brain did react very aggressively (in terms of responsiveness and intensity) to release of any pre-ejaculate last week. If I have to make a guess it's somewhere around the hypothalamus area. My symptoms were, at the same time:

- A complete loss of appetite and hunger
- Low GI motility
- Poor digestion
- A complete loss of the sense of smell
- A complete loss of thirst
- Major disruption of breathing rithm (frequency cannot be maintained)
- Blood circulation issues
- Palpitations
- Multiple brief moments of activity around the Thyroid area
- My sex drive increased when I maintained an erection

I suspect POIS affects neuroendocrine cells. When looking at neuropeptides which controls food intake I see some interesting candidates: https://en.wikipedia.org/wiki/Hypothalamus#Control_of_food_intake

Like Leptin
I think there might be some change in certain neurohormone levels/signaling or inflammation of neuroendocrine glands due to POIS.

Have you tried L-Arginine? I know it's bad for people with Herpes Simplex infections but it seems to help me with gut motility. I think it builds the gut mucosal lining, it is also involved in heart health and it boosts blood flow so it can cause erections.

Have you tried L-Arginine? I know it's bad for people with Herpes Simplex infections but it seems to help me with gut motility. I think it builds the gut mucosal lining, it is also involved in heart health and it boosts blood flow so it can cause erections.
I have tried L-Arganine or L-Citruline, can't remember which one it was. Anyway it did nothing. Took this because of NO theories.

Dumping some info here:

''IL-10 checks the inducible form of Cyclo-oxygenase, Cyclo-oxygenase-2 (COX-2). Lack of IL-10 has been shown to cause COX activation and resultant Thromboxane receptor activation to cause vascular endothelial and cardiac dysfunctions in mice.''
https://en.wikipedia.org/wiki/Interleukin_10

Combine that with Nanna's theories about COX and my IL-10 Data. IL-10 seem to dip right after orgasm this could lead to COX activation. Timing of COX inhibitor intake seem to be crucial. IL-10 is anti-inflammatory and if IL-10 is the main inducer of COX activation then IL-10 upregulators could be used for therapy.

Tregs could be tested. Treg pool can be increased by testosterone and IL-2 therapy. IL-10 can be upregulated by testosterone as well.

Naltrexone, blocking TLR-4 (also mu-opoid), decreasing IL-8 https://www.tandfonline.com/doi/abs/10.3109/10520295.2014.903299
Targeting TLR-9 for IL-8: https://www.ncbi.nlm.nih.gov/pubmed/21968713

Ways to increase IL-10: https://selfhacked.com/blog/il-10/

Calorie restriction, which is beneficial to me, seem to decrease IL-8 and increase IL-10. IL-8 test has been taken in the morning, it could increase by meals (testing later on day?).
Wim Hof's, the Iceman, breathing meditation seem to be beneficial.

People complaining about high/low temperature sensitivity, pressure, friction. Sensory neuropathy?

My brain seems to react clearly to pois. Summer plays a role in this as well. I'm thinking about testing some obscure hormones. My GP was thinking about sending me to an endocrinologist but most docs are not taking POIS seriously.

I also tried to get some testing for osteoporosis done but this was being refused because of my age and normal bone markers. I'm getting these blackouts lately where i can't remember what i were doing. If this keeps going on in this manner i will be having full blast alzheimer/parkinson in 10-15 years.

is your "amnesia" like, you thought about doing something next but as you finish what you are currently doing you forget what you are suppose to do next.
Is it something different.
what do you mean by summer plays a role
Yes and I forget what I'm currently doing. These episodes happen more frequent during hot weather conditions and also hot weather seems to synergize with POIS as in POIS being more reactive.

Example 1: I want to go to the supermarket and prepare myself. Putting on my coat. Suddenly I stand in the hallway and forget what I'm doing and what I suppose to do next. At that moment I do not know why I am wearing a coat.

Example 2: I have no appetite and need to remind myself to make a meal. At the moment just before I'm getting up to make a meal I forget what I'm going to do next. I can't remember. So I skip the meal.

I also got breathing rithm problems, so perhaps this is due to a lack of oxygen. I can feel that blood flow to the brain isn't optimal anyways.

Yesterday I ejaculated a large amount of sperm. POIS symptoms did build up very slowly, almost unnoticable. 5 hours later it accelerated. I became feverish and nauseous, I almost threw up. Just before this acceleration I ate my evening meal. It's weird because these were not my typical POIS symptoms. I'm thinking about getting a test for a complete blood count and time it exactly when it accelerates.

Today I ate some watermelon. It induced a runny nose immediately after ingestion followed up by a wave of fatigue and did not feel well. I could feel parts of tissue inside my body react where the juices made contact. I suspect it's the same mechanism as POIS.


- A complete loss of appetite and hunger
- Low GI motility
- Poor digestion
- A complete loss of the sense of smell
- A complete loss of thirst
- Major disruption of breathing rithm (frequency cannot be maintained)
- Blood circulation issues
- Palpitations
- Multiple brief moments of activity around the Thyroid area
- My sex drive increased when I maintained an erection

Intresting, i am trying resarching again connection on histamine intolerance, 80% of this symptomes fit in histamine sensitivity, histamine
intolerance.
Is it posible that , during arousing (ejaculation specialy) trigger in us a storm of
histamine,on  wich we are hipersensitive?

Pros:
Symptomes match
Linked to orgasm
Can be linked to microbiota
Can be linked to hormones, stress, exercice...

CONS :
No blood test showed high hista levels
Some guys improved with anti-hitamine (benadryl, loratadine) but few
WAldinger said no
Timing is not good : it appears after some minutes BUT it mostly disappears quickly, in several hours
No/few Poisers seems sensible to histamine food release : cheese red wine, seafood...
Alcohol decrease Diamine oxidase activity and then alcohol may increase Pois symptoms but it doesn't.

Diamine oxidase is the key hormone.
Histamine is elimintaed by Diamine oxidase but if its levels is low, too much histamine can be present in blood, causing symptoms after a trigger.

I fully agree b_jim.

Well it is not that simple,
histamine intolerance fit nicely
in pois symptomes(only 1%) the same like chronic lyme.


Not even chr- lyme or hist- intolerance are not recognized by  medicine.

But when you resarch POIS
symptomes -neuro, CFG, ME,
POTS... you will always find there lyme disiese, try it :) .
From mayo clinic to...

Appropriate methylation is also essential for proper histamine catabolism. Histamine N-methyltransferase (HNMT) is an enzyme required for breakdown of histamine in the intracellular pathway.
(people cured pois with this)

This alsou afeect pois:
Histamine, in its role as a neurotransmitter, works to control the sleep-wake cycle. It may decrease GABA levels and increase norepinephrine and epinephrine levels. Histamine may cause increased permeability of the blood-brain barrier. It also significantly influences neuroendocrine control including behavioral state, biological rhythms, energy metabolism, thermoregulation, fluid balance, stress, and reproduction. Elevated histamine may affect thyroid function. Histamine may play a role in neurocognitive function as well. (Haas, 2008)

Read few treeds here and you will see that is not that simple.
DAO, MAO, diet, non diet...stress,
infections, genetics...

https://healthygut.com/articles/how-to-get-relief-from-a-histamine-intolerance/

https://www.medicalnewstoday.com/articles/322543.php

https://www.diagnosisdiet.com/histamine-intolerance-science/

http://www.diagnosisdiet.com/histamine-intolerance/

https://www.medicalnewstoday.com/articles/322543.php

diarrhea
chronic headache
flushing, especially of the head and chest
irritable bowel syndrome or IBS
congested, runny, or itchy nose
red, itchy, or watery eyes
sneezing
shortness of breath
hives or red, raised, itchy, burning bumps
very itchy skin
unexplained anxiety
stomach cramps or pain
chronic constipation
nausea and vomiting
gas or bloating
unexplained exhaustion
dizziness
very dry, patchy, or scaly skin (eczema)
irregular or increased heart rate

What if mast cells are infected? It could mimmick a mast cell activation disorder by a change in their function.
Mast Cells and Natural Killer Cells?A Potentially Critical Interaction

Now virus-infected mast cells seem to release IL-8. This is upregulated in my case as well.
They recruit NK cells via IL-8. This could be drawn from the peripheral blood lowering their numbers. My NK cells are low as well.
IFN-gamma seems to increase by this infection which is also elevated in my case.

I wonder whether gastrointestinal candida colonisation promotes sensitisation against components of human sperm. Could it depend on the location of colonization? Perhaps at the part where Vitamin D is absorbed, since low vit D numbers can be low in poisers.
Gastrointestinal Candida colonisation promotes sensitisation against food antigens by affecting the mucosal barrier in mice.

The wax and wane behaviour of my symptoms is strange. POIS switches emphasis on symptoms. Periods with higher intensity of symptom A which can fade in intensity after a while and emphasis switches to other symptoms/body locations. Smoldering behaviour.

Another thing is when in POIS I can feel something flowing/crawling very slowly in my lower legs (if I am interpreting this correctly). The speed is in the order of ~mm/sec, it's close to the surface of the skin.

Muon before desensitization did you make Cytokines test?

Muon before desensitization did you make Cytokines test?
No

This is a very interesting paper. I was looking at the sensitivity difference between urinary vs serum light chain testing and stumbled upon this paper:

Polyclonal free light chains: a biomarker of inflammatory disease or treatment target?

So for eosinophil activity I can use ECP and for B cell activity I can use free light chains. Even when there are (auto-)antibodies involved why hunting for them when you can measure their breakdown products? FLCs can be deposited in organs. IL-8 appears to be involved as well.

I asked this question Muon because there is a chance you developed your immune response after desensitization.
I think whoever did not undergo desensitization should do these tests.

Higher environmental temperature upregulates Leptin. Also duration of exposure to a higher temperature will lead to increased leptin. Duration of exposure to higher or lower temperatures has a significant effect on my health. Feels like higher temperature induces low grade inflammation and the length of exposure will amplify this. My earlier thoughts were that temperature effects had something to do with mast cell activation, endothelial dysfunction, sensory nerves or dysautonomia. I can add upregulation of leptin to that list of possibilities. Digestion is also improved during winter compared to summer time, leptin could play a role in this.

https://www.ncbi.nlm.nih.gov/pubmed/22279186
https://www.sciencedirect.com/science/article/abs/pii/S0026049500800013
https://link.springer.com/article/10.1007/s00421-004-1084-7

''Leptin promotes T cell activation and shifts the T-cell cytokine production towards a Th1 response''

''recent reports have indicated an ability of leptin to negatively influence the proliferation of naturally occurring human CD4+CD25+FoxP3+ regulatory T cells''

Leptin and Inflammation

It seems I'm getting bubbly urine after a period of symptoms including and especially muscle stifness. These bubbles seem quite large like 1 cm in diameter on average, I wouldn't classify this as foam. I'm certain this isn't caused by the high velocity of the urine stream.

Something else came to mind was the candida albicans LTT testing. What if there is a hightened permeability of the intestinal barrier somewhere. The species which are already present may able to come into contact with the immune system. There could be a specific immune response where memory T cells against candida are produced. But what if these are not specific at all? What if a molecule from the seminal fluid fits onto the same receptor as candida albicans? These memory T cells might be activated by release of seminal fluid, while they are created to suppress C. Albicans in the first place. I'm not talking about infection or colonization.

Candida Albicans LTT

I got testicle pain at the moment. It's like they are being squeezed.

Yes my testicles also hurt when in POIS. Most of the time the left one. My urine is darker and smells very bad. I got my urine tested twice at my family doctor, but there was nothing to see.

Yes indeed it's the left one most of the time. It's smoldering with a wax and wane behaviour. Also the pressure at the lower part of the spinal cord leading to weakness in my legs impairs my daily living big time...I can't even do the dishes at the moment. Standing on weak legs is so exhausting.

I had this in the past that this pressure continued to buid up. At a certain treshold the pressure drops completely and a leg jolt happens at the same time. It's like lightning shooting through my leg. I get only one shock through my leg and only one leg is involved. The pressure build up takes tens of minutes. Sometimes I could prevent this build up by moving around. POIS triggers this behaviour.

A moment of arousal today has put me in a tense state for almost a whole day, especially in my limbs. I suspect this is a vasospasm, it's tightened up. Legs are weaker as well which I think stems from decreased blood supply. I think there isn't sufficient blood being supplied to muscles causing exercise intolerance. The ANS might be responding abnormally to arousal or release of pre-ejaculate. My brain felt tense as well.

Pressure in my back is getting worse. As soon as I stand up my legs are getting weaker and keep getting worse with prolonged standing. It's exhausting. I get relief by bending forward or laying down. POIS is also a trigger for this pressure in my lower spine. Lumbar spinal stenosis? https://en.wikipedia.org/wiki/Lumbar_spinal_stenosis

A moment of arousal today has put me in a tense state for almost a whole day, especially in my limbs. I suspect this is a vasospasm, it's tightened up. Legs are weaker as well which I think stems from decreased blood supply. I think there isn't sufficient blood being supplied to muscles causing exercise intolerance. The ANS might be responding abnormally to arousal or release of pre-ejaculate. My brain felt tense as well.

Pressure in my back is getting worse. As soon as I stand up my legs are getting weaker and keep getting worse with prolonged standing. It's exhausting. I get relief by bending forward or laying down. POIS is also a trigger for this pressure in my lower spine. Lumbar spinal stenosis? https://en.wikipedia.org/wiki/Lumbar_spinal_stenosis

Blood flow issues should be treatable with L-Arginine, it is a vasodilator.

Problems right now is extremely tense muscles, rigidity of joints my shoulders are completely
****** up , my right eye like vision is reduced 50% and hypersexuality. Hypersexuality is excruciating i cannot focus. When i get aroused my muscles tense up...

Language, please

and hypersexuality. Hypersexuality is excruciating i cannot focus. When i get aroused my muscles tense up...

I'm using Metoprolol succinate Ret T 50 mg (slow releasing) for the last 8 days for cardiac issues and it seems to neutralize the hypersexuality spikes. I already knew this from the one time I used the 25 mg tartrate once but I found that form too intense. It also reverses the weakness in the legs a bit, It feels like more blood is flowing through my legs, knee joints feel better and I feel that my feet get more resistance against the ongoing fungal creep. It also does something to my brain, I get the impression that my brain is locked into a different state. My GP proposed to up the dose to 75 mg because it doesn't have a constant effect to leg weakness, it seems to come in waves/bursts.

Alot of beta blockers lower testosteron

Testosteron is needef for tissue repair

Summer has come to an end and it's getting colder. I just took a walk outside when it was cold and felt so much better. The effect is insane. I have my central heating turned off and feeling better when night falls inside my apartment as well.

- Increased muscle strength, especially in lower limbs. I can stand on my legs without much problem (major difference compared to summer).
- Increased stability of heart rate
- Less intense POIS symptoms in general
- Faster recovery period of POIS symptoms
- Less brain fog
- Better metabolism/digestion
- Decreased food sensitivities
- Less joint pain (knees and spine)

Did some googling and found this: Immune Responses to Exercising in a Cold Environment

''Even brief exposure to cold leads to increased levels of norepinephrine and cortisol, lymphocytosis, decreased lymphoproliferative responses, decreased levels of TH1 cytokines and salivary IgA, and increased lactate levels during exercise.''

Perhaps I should move to a country with an (sub)arctic climate.



It's the same with me , the heat is "killer" for me.
But ... when winter is tough, I can't handle it the same,
due to muscle stiffness, asthma like symptomes, MG symptomes, lower immunity etc ...
Pois in winter make my extremities very cold, poor circulation.
In summer,it is the opposite ,
i get POTS.. dubled fatigue, hard heart pumping,
and many other symptomes.

If really it helps you, I recommand derivative bath.
I tried it without real effect on my Pois but why not.

The idea is to cold the center of body which is the center of body (pubis, Perineum) temp regulation (if we except hypothalamus) to generate "positive effects" (like less inflammation).

The old method was to wash and make a massage of theses areas with cold water ("fresh water" not too cold).

The modern method is to put an "ice pack" to cool the Perineum area.

Human epithelial cells trigger dendritic cell-mediated allergic inflammation by producing TSLP

''TSLP-activated DCs primed naive TH cells to produce the proallergic cytokines interleukin 4 (IL-4), IL-5, IL-13 and tumor necrosis factor-α, while down-regulating IL-10 and interferon-γ.''

Thymic stromal lymphopoietin: master switch for allergic inflammation



The B-cell side of Allergy and Chronic Inflammatory Disease: Studies on the source of IgE and IgG4

Click on Free full text at the right side of the page. See chapter 6.

''Concluding, our data provides evidence for long lasting effects of sublingual immunotherapy on the memory compartment of the immune system. Increased numbers of regulatory T-cells lead to a higher frequency of IgG4+ memory B-cells and a beneficial shift in the IgG4+/IgE+ memory B-cell ratio, reflecting the increased IgG4/IgE antibody fraction in serum, which results in a favorable outcome.''

So the SCIT might have increased my IgG4 levels (my brother did not receive any immunotherapy). These levels may indicate that there was an increase in Tregs. We could be dealing with low Treg numbers here. They are also mentioning that Treg numbers at mucosal surfaces especially might be altered. I personally got problems with food reactions at mucosal surfaces. So Treg numbers in POIS patients is something that can be investigated especially at mucosal surfaces.

Sometimes when I wake up my oral mucosal layer can be thick, smooth and developed. As soon as I wake up my mouth gets dry. I first thought it had to do with posturing up or physical activity and didn't bother with it. After that I had a few moments where my oral mucosal layer was thick again and this time I stayed in bed a little longer when I woke up. My mouth still dried up.

It has to do with the wake state. I noticed that my brain switches to a slightly tense state when waking up, my interpretation is that it's in an overactive state. Also low environmental temperatures + a good night of sleep increases the chance of me waking up with a non-dry mouth.

Yes I have this too. When my sleep is bad I wake up with a dry mouth. And I also have a lot of dental plaque. I have this when in POIs. But the latest months also out of PoIS.

This is mostly a case of Mouth breathing.  Both you and vandemolen must be breathing through your mouth due to a obstruction happening in your nose while sleeping.

Testicle pain in my left testicle woke me up in the middle of the night. Plus I had problems getting my breathing frequency constant (this is not hyperventilation, it's closer to hypoventilation). I also had the feeling some circulatory system was sluggish. I often get the impression there is a lower volume of blood available or that the body has trouble distributing it properly.

Sometimes I can feel the liver flaring up when these type of symptoms show up. I think the liver gets less blood volume per unit time. Antoher example is when I eat a meal I can have the feeling some circulation slowing down and start to get problems with my breathing frequency. What I think happens is that the stomach at that moment draws more blood towards itself for digestion and it draws it from places where it's needed.

Something different; The tightness or squeezing feeling during POIS that last for hours to days. My wild guess is that this is vasoconstriction (smooth muscle contraction?). Autonomic signaling? Endothelial problems? Or slow reacting substances of anaphylaxis(SRS-A) that play a role in hypersensitivity reactions but minus the anaphylaxis part?     

Have you experimented with individual B vitamins? I've read that B1 (Thiamine) can affect breathing at night.

I've tried a B complex and had a bad reaction. I am looking at individual B vitamins now.

Have you experimented with individual B vitamins? I've read that B1 (Thiamine) can affect breathing at night.
I've tried a B complex and had a bad reaction. I am looking at individual B vitamins now.
Yep same here vitamine B complex gives me a bad reaction as well, tested this multiple times. I haven't tried testing them separately for long periods. I'm trying some niacin again but lower dose 100 mg (non flushing dose). The first few tries had some minor positive effect on circulation (against the feeling of circulatory stagnation). But it isn't long lasting and is only noticeable when this symptom intensity is low, it doesn't do anything for my pois.

I have tried some CBD oil of 10% not pharma quality as purity goes, just from the store. My initial impression is that it suppresses my POIS to some extent now and then (the stuff isn't distributed evenly in the jar as far as density goes) but quit using it because I had some bad reactions to it, like suddenly feeling susceptible to infection and inducing intense sore throat. It works actually better outside POIS against inflammatory flares. I will need higher dose, higher purity, higher frequency intake per day and a longer period of intake in combination with POIS to conclude this actually works.

Bad posture gives me autonomic instability. I'm starting to leak some drops of fluid (urine/prostate fluid?) when I'm in an inclined positions (semi supine) which is a new symptom. Quick transition from supine to upright gives me a sudden urge to urinate lately, which is an old symptom. It feels like the upright position activates the SNS, there is also some pressure in the lower part of the spine especially when standing still.

Got stress from sitting still. This led to a light burning sensation below the surface of my skin around the upper body. Most noticable in my arms especially forearms. Also had problems of forgetting to breath. Zero sense of thirst and appetite. Need to remind myself to drink. Impaired sense of smell. Increased frequency of urination and some spills of droplets from my urinary tract. Can't get warm when I'm cold. Nasal drip and runny noses from stress. Avoiding triggers especially stress is an impossible balancing act before you know it you are slowly sliding into a downward spiral.

The day before there was a sudden focal activity at a spot around the centre of my brain. Shortly after that my body started to get hot. It wasn't fever, I wasn't glowing or sweating.

I think POIS is majorly a limbic system dysfunction leading to imbalance in the HPA axis leading to the abnormal immune activity.
I think this is as close towards understanding POIS as I will ever get.

You’ve certainly given it much extensive thought

It never occurred to me to test IL-8 in seminal plasma. Perhaps the serum level is an indication of elevated sIL-8. Very interesting and information dense paper. There is even a link with premature ejaculation. I haven't read all of it yet, will comment later.

Interleukin 8 and the male genital tract

''Of importance, in both murine and human systems, b2-AR agonists inhibit IFN-g production by Th1 cells, but do not affect IL-4 production by Th2 cells.'' page 616

The Sympathetic Nerve - An Integrative Interface between Two Supersystems: The Brain and the Immune System
« Last Edit: December 16, 2019, 06:45:47 PM by Muon »

Simon66

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Re: Muon's Case
« Reply #27 on: December 18, 2019, 03:38:11 PM »
Did the doctors say anything about your very high CMV and VZV titres? Did you try to treat it or retest it?
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Muon

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Re: Muon's Case
« Reply #28 on: December 18, 2019, 06:37:34 PM »
Did the doctors say anything about your very high CMV and VZV titres?
No. The VZV memory antibodies are literally off the chart btw.

Did you try to treat it
Not sure what to do. I did get treated 15 years ago with, I believe it was, acyclovir and prednisone for 14 days.

or retest it?
Nope

I have updated the family member section of this thread especially the part of my Aunt. Be prepared for an absolute shitstorm.

Simon66

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Re: Muon's Case
« Reply #29 on: December 18, 2019, 07:15:35 PM »
I found a research article of someone that took the same dangerous antibiotic as I did (Ciprofloxacin). This guy had some flu-like symptoms but quickly deteriorated and died of multiorgan failure after the hospital gave him the antibiotic. In the autopsy, they discovered that most of his failed organs contained Herpes Simplex Type 1 and I think the antibiotic caused the virus to spread.

https://www.hindawi.com/journals/cricc/2012/359360/

I would not be surprised if this is what causes the symptoms all over the body. A lot of the symptoms you've described in this thread, I developed after taking the antibiotic, it really feels to me like there is some kind of pathogen that has gotten into my organs.

L-Lysine seems to help when my symptoms get bad which is another indication that my issues are viral.

Do you think this might be the cause of your issues?
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Muon

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Re: Muon's Case
« Reply #30 on: December 21, 2019, 10:52:57 AM »
Do you think this might be the cause of your issues?
I have no idea Simon. I'm triggering activity in my body by certain triggers, also in a slow smoldering and lingering way. You could make a case for viral reactivation but I'm leaning more towards mast cell activation. I'm not jumping on any potential cause for the full 100% though. 

Simon66

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Re: Muon's Case
« Reply #31 on: January 10, 2020, 11:44:08 AM »
Do you get acne or other skin infections?
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Muon

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Re: Muon's Case
« Reply #32 on: January 13, 2020, 05:22:49 PM »
Do you get acne or other skin infections?
On my shoulders and back there is something that resembles acne but dermatologists are not 100% sure it's acne. It's seems to show up together with symptoms. They say it might come from overactive sebaceous glands.

Only a few innocent fungal skin infections, but these were developing really slowly and were easily countered.

Oh a few post back I talked about smoldering and lingering activty. I recently contracted the flu from my dad and this behaviour was more intense than usual especially at the onset of the flu.
« Last Edit: January 14, 2020, 11:49:47 AM by Muon »

Simon66

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Re: Muon's Case
« Reply #33 on: January 21, 2020, 10:28:16 AM »
Have you tested your prolactin levels soon after an O? These links might interest you:

https://www.issm.info/news/sex-health-headlines/post-orgasmic-prolactin-surges/
http://forums.rxmuscle.com/archive/index.php/t-7428.html

I am currently using some vitamin B6 to see if makes any difference to my symptoms. As you know, my Prolactin came back high in August 2019.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Muon

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Re: Muon's Case
« Reply #34 on: January 21, 2020, 02:48:21 PM »
No. The only hormones that have been measured are thyroid hormones. Somehow nobody took the effort testing for other hormones.
« Last Edit: January 21, 2020, 02:50:11 PM by Muon »

Simon66

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Re: Muon's Case
« Reply #35 on: January 22, 2020, 02:16:37 PM »
No. The only hormones that have been measured are thyroid hormones. Somehow nobody took the effort testing for other hormones.

I guess if you are going to get Prolactin checked, make sure it's after an O.

I actually did one of those home finger prick tests that I mailed to the laboratory, they're not too expensive. My high prolactin level was tested about 10 hours after an O so maybe this is something other people on this forum might want to check.

I tended to find that my sex drive would go away for about a week after an O so I guess that's how long it takes for my prolactin to drop down to normal levels. I haven't actually checked my prolactin 1 week after an O though so this is speculation.
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.

Muon

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Re: Muon's Case
« Reply #36 on: January 27, 2020, 05:10:25 PM »
Strange I had an orgasm with almost zero POIS symptoms. A small area close to the center of the brain stabilized within a few minutes (rough estimate, could be a bit longer) after orgasm. I thought there was no problem in that area at that specific moment until the quick transition to a more 'normal' like state happened, the 'normal' state feels less active, much calmer. My libido also made a big change during the last 1.5 months from high to low and POIS symptoms have slightly improved, probably due to prolonged cold weather conditions.

Edit: forgot to mention that my body as a whole was relaxed, other symptoms were barely present and it was past midnight.
« Last Edit: October 11, 2020, 01:23:52 PM by Muon »

Muon

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Re: Muon's Case
« Reply #37 on: February 05, 2020, 11:06:21 AM »
Strange I had an orgasm with almost zero POIS symptoms.

https://youtu.be/t87dsMDXPZ4?t=220

I did nothing to cause this unlike the claim from the guy in the video, but it was quite cold in my room at moment of orgasm (I wasn't cold) which benefits my POIS. My POIS symptoms seem to be trending in the right direction at the moment but very slowly, in a creeping manner, let's hope it continues that way for the next upcoming years. In MCAD symptoms come and go, it can take years to decades.

Avoidance of triggers might make mast cells less triggery, as in lowering its threshold. Receptor density might diminish in abstence of a trigger. He might have avoided a different trigger not mentioned in the video like alcohol. His POIS might have resolved spontaneously aside from avoiding triggers (which happens to other symptoms I got so I'm not surprised by this).

Muon

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Re: Muon's Case
« Reply #38 on: February 10, 2020, 09:23:19 PM »
This paper proposes the following diagnostic criteria for MCAS, table 2:

Often seen, rarely recognized: mast cell activation disease - a guide to diagnosis and therapeutic options

1) Major criteria 1 + Major critera 2

Or 2) Major criteria 2 + at least one minor criterion

Diagnosis could already be made in my case. Major criteria 2 + minor criterion 4 (11-b-PGF2a)
  • History of symptoms are more important than the current state of symptoms
  • Dynamics of symptoms are perhaps more relevant than the type of symptom, I have no motivation to list all of that, it's daunting
  • Every therapeutic option listed here should be tried: https://www.tandfonline.com/doi/suppl/10.3109/07853890.2016.1161231?scroll=top
  • Even out of POIS low grade inflammation is present and should be surpressed by above options.
  • Family history should be considered
  • Mutations of genes in table 2 should be investigated: The genetic basis of mast cell activation disease - looking through a glass darkly
  • A program should be made, lifestyle changes, diet, fysio therapy exercises which are smeared out over the day in combination with a medicine that takes away some of the inflammatory behaviour
  • Triggers should be avoided 24/7 at all cost
I'm not getting one step further without some help of doctors. I get the impression that my lower part of the spine is deteriorating by low grade inflammation. These are smoldering fires which lingers around and can turn into more intense inflammation by triggers which can lead to flares in other parts of the body.
« Last Edit: April 03, 2020, 04:13:53 PM by Muon »

Simon66

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Re: Muon's Case
« Reply #39 on: March 21, 2020, 08:18:35 PM »
Does orgasm intensity have an impact on your symptoms? I found that Now L-Lysine powder at 2000mg per day for a few days leads to a very strong orgasm intensity.

I found another person's stack as follows:

Quote
3 Grams L-Arginine
4 Grams L-Lysine
14.4 Grams Lecithin
25 mg Zinc
Multi Vitamin Pack

This combo works great for me. The only drawback is when I dump my load that’s it. My orgasm is so intense and voluminous I am expended and don’t want to go round two.

Source : https://www.thundersplace.org/male-supplements/l-arginine.v3.html

Here's a different link with a very similar protocol:

https://www.naturallyhard.net/supplements-semen/
« Last Edit: March 21, 2020, 10:54:36 PM by Simon66 »
Disclaimer: Please research all supplements thoroughly and take them at your own risk. I am not responsible for any adverse reaction you may suffer.

Avoid all Fluoroquinolone antibiotics including Ciprofloxacin, Levaquin and Avelox.