Leaky gut, leaky brain theory

[Fox]

My experience with gluten :
- I have not celliac disease
- clearly gluten gave me important gaz and abdominal pain. (for example, I can't wear trousers with belt because I have important gaz accumulation)
- I don't have the feeling gluten free diet improve my Pois. But I didn't follow it very seriously.
 
Anyway, Taurine greatly improves my Pois, so metabolic/nervous system causes is still my favorite...

I like to use celiac disease as a reference model, because it has been well researched over the years. There are unfortunately many people with gluten-sensitivity which complete normal serum values. These people may also present with many extra-intestinal symptoms, partly mimicking POIS. Such as brain fog, concentration difficulty and fatigue. Some of the symptoms of POIS are not typical for allergy. People with (NCGS) non celiac gluten-sensitivity should respond relatively fast to a gluten-free diet, within two weeks or so. I believe when there is a lot of bacterial overgrowth, a gluten-free diet may take somewhat longer. Bloathing can of course have a lot of other causes?.
 

[demografx]

There is a lot of ongoing research about gut-brain-axis pathological mechanisms.

This forum once created a $35,000 grant for a world renowned orgasm research team who believed in this same GBA pathological mechanism you describe and started to study vagus nerve dystonia as a possible POIS culprit. Unfortunately, the study could not be completed due to a number of unrelated events.

Along those lines, a number of forum members today continue to look at possible POIS relief via tVNS:
https://poiscenter.com/forums/index.php?topic=2969.msg28466#msg28466

[demografx]

It can be that this forum member [Animus] had really severe disease.

I think you’re right. His video story below might confirm (I haven’t seen it in a long time). Many of us here I believe have had “really severe” POIS, including myself. The lifelong severity and effect on my functioning (so poorly) is what motivated me to get so involved in the cause.

The Learning Channel TV program video link on Animus’ POIS cure:

https://m.youtube.com/watch?v=6sdaR18vw1s

[b_jim]

Some years ago , a medicine student said here he cured his Pois with olive oil and fenugreek. He tought Pois is a trouble of lipid bad absorption/metabolism. Gluten or other can explain such a thing.

[Muon]

Fox, do you got other medical conditions aside from POIS? Allergies?

[demografx]

Some years ago , a medicine student said here he cured his Pois with olive oil and fenugreek. He tought Pois is a trouble of lipid bad absorption/metabolism. Gluten or other can explain such a thing.

b_jim, in your 12-year old POISer tracking & analysis, hasn’t fenugreek emerged as working somewhat for several POISers?

[Fox]

Fox, do you got other medical conditions aside from POIS? Allergies?

I actually do have very low cholesterol: LDL 27 mg/dl, HDL 40 mg, Total cholesterol 98 mg/dl. Triglycerides 35 mg/dl. ApoB was 24 mg/dl. Which, with no doubt, causes (at least subclinical) lack of fat-soluable vitamins, such as vitamin E. These values are too low to be explained be celiac disease alone. Probably it relates to a benign condition called FHBL. People with celiac disease experience a slight increase in cholesterol when going gluten-free, which did not happen in my case. 

I have also have some rare symptom which is called cold paresis (your doctor hasn't heard of it before probably ). That means, that muscles that muscles get weaker when exposed to prolonged cold. Putting my hands under ice cold water (1 min) leads to decrease in muscle strength in the local hand muscles, measurable by spreading the fingers against force. Eating ice cream in summer can alter speech a bit over 10 minutes. These symtoms may be explained through nerve damage or malfunctioning due to vitamin deficiency, gluten-damage, or due to a light variant of a genetic condition called paramyotonia congenita. There are also some other rare diseases which cause cold paresis such as MMN (multi-focal motor neuropathy), Hirayama disease which I believe I don't have.

What is interesting about paramyotonia congenita is that it is a channelopathy. Some patients have a condition called sexual headache, which leads to headache directly after orgasm. The pathology of migraine is not entirely understood but it might relate to channel malfunctioning and vasodilatation.

A channelopathy might also be a plausible disease model for POIS, in which the sudden burst of hormones (prolactin) and blood pressure by orgasm may cause some impaired channel to be overloaded. Someone on the forum had genes for congenital myasthenia (=myasthenia caused by channel mutations) which is interesting, because such people may suffer from dysautonomia.

Interestingly I can induce POIS-like symptoms by drinking more than 0,5 liter of cola, which can't be explained by reactive hypoglycemia.

[Fox]

Some years ago , a medicine student said here he cured his Pois with olive oil and fenugreek. He tought Pois is a trouble of lipid bad absorption/metabolism. Gluten or other can explain such a thing.

b_jim, in your 12-year old POISer tracking & analysis, hasn’t fenugreek emerged as working somewhat for several POISers?

Fenugreek comes with micro-organisms on it. It could be that he improved his gut flora by eating herbs. Vitamin deficiency would result from lipid malabsorption. Are there people among you guys who have proven vitamin deficiency/cholesterol deficiency?

[Nas]

Dr. Why did you jump into the conclusion that it's some sort of endothelial barrier dysfunction rather than a neurological disorder? Do you not have brain symptoms?

[Fox]

I would like to add the discussion the possibility of a group of different genetic mutations causing POIS, explaining the different phenotypes and severity degrees. As mentioned in other threads some people (as in my case) notice slight myasthenia-like symptoms. As myasthenia gravis itself seems not to be linked with POIS, other forum members considered CMS (congenital myasthenia gravis) as a possible cause of POIS. CMS partly overlaps with other diseases, like periodic paralysis and (para)myotonia. In each disease case the symptoms depend mostly on the exact (channel) mutation. Symptoms can vary between hardly noticeable and severe.

Interestingly in periodic paralysis there are also triggers, like eating much sugar which cause symptoms. Periodic paralysis also can cause brain fog. The symptoms in these kind of diseases can also last over a few days.

[Hopeoneday]

Fox , this is intresting observation from you.
I hawe MG symptomes, i did tested
Ach antibodies-negative.
Then i learned that MG could be nonserologic(there are several new diagnostic posibilitys)
I to has this cold paresis symptomes , but on heat i go in pois state condition, nervos system acting like it wil be comlitly stopped (feels like im diying , "like fish on dry" .

From my observation here, some poisers are immunocompromised.
When i pulled Virus theory, and
sugested antivirals, some poisers responded wery well (it was life changer for them)
They are no active here eny more.
So, something suppresing our imunity ...
As you can notice, gut and diet connection, play crucial role in some poisers...
Then i noticed from our medic tests results , that a lot of us has low
neutrophils count(like neutrophenia).
Nana1 notice that this is rare.

[Fox]

Dr. Why did you jump into the conclusion that it's some sort of endothelial barrier dysfunction rather than a neurological disorder? Do you not have brain symptoms?

Because many people report improvement after diet modifications a gut-brain-axis related cause may be plausible. We can't conclude (yet) that it is neurological disorder, because we can not demonstrate primary focal brain, nerve of muscle pathology. In the case of for example gluten-ataxia we can demonstrate shrinkage of the cerebellum, although the primary disease is celiac disease. For example low blood sugar causes a foggy brain, but the cause of the low blood sugar does not lie in the brain. There a still a lot of research questions for POIS. I did have the brain fog symptoms and unclear speech in the past.  I also did have episodes of muscles weakness, which were provokeable through cold or prolonged exercise.

There is also the question to which doctor you go to. A neurologist is very competent at diagnosing different neurological diseases through exams and examining results of scans, nerve measurements etc. In the case of POIS with diffuse symptoms I would rather first go to a doctor for internal medicine or a urologist. When you only have headache, muscle weakness or speech problems after sex, then I would first go to a neurologist. It differs however in certain countries to which doctor you go to in which case..

[Fox]

This forum once created a $35,000 grant for a world renowned orgasm research team who believed in this same GBA pathological mechanism you describe and started to study vagus nerve dystonia as a possible POIS culprit. Unfortunately, the study could not be completed due to a number of unrelated events.

Along those lines, a number of forum members today continue to look at possible POIS relief via tVNS:
https://poiscenter.com/forums/index.php?topic=2969.msg28466#msg28466

I found some interesting article about vagal nerve stimulation in gut-brain-axis related disorders: Vagus Nerve as Modulator of the Brain?Gut Axis in Psychiatric and Inflammatory Disorders. It is plausible to think that a unhealthy gut causes a dysautonomia through impaired vagal nerve back-communication to the brain. It is funny that we always talk about the vagal nerve, although we have actually two of them Some people on this forum report about improvement after intake of acetylcholine-agonists, which also activates parasympathic function. The question then raises whether in POIS the vagal is not enough stimulated enough or the signal does not reach the vagal nerve through neurotransmitter-channel impairment. When a dysfunctional vagal nerve would be involved in POIS, then the sympathetic tone would be dominating during sexual arousal, explaining also the early ejaculation, which is frequently reported in POIS.

When a weak acetylcholine-channel (genetic or auto-immune/food allergy) would be the cause of vagal nerve understimulation in POIS. Then the already weak channels may somehow be depleted during the phase in which the body tries to return in normal state under influence of prolactin after sympathetic nerve activation. 

[Quantum]

Hi Fox, and welcome to the forum !

I agree that many members had improvement when turning to a more healthy diet.  Better nutrition is part of my own overall relief method.  No more industrial food, no more MSG, no more aspartame, no more artificial flavor or color, no more refined sugar.  And, for 4 years now, my green smoothies of organic veggies and fruits are an essential part of my diet.   I have more energy now at 54 than I had at 35   I think a healthier diet would help anybody, not just POIS sufferers, so it is a logical first step for any POIS sufferer.

Talking about healthy gut, did you tried some probiotics supplements with both strains of lactobacillus and strains of bifidus ?  Flooding the guts with good bacteria really helps getting rid of the methane-producing ones.   Clindamycine can help in theory to get rid of anaerobic bacteria, but after antibiotherapy is finished, the bacteria left will occupy the free space again, with time.

Channelopathies have been briefly discussed here.  I do not exclude that it may be part of what causes my POIS, because taking potassium really helps with my fatigue, both for POIS and after physical exercise.  As you mention in a previous post, it may be possible that a different set of unfavorable SNPs can be present in POIS sufferers, and depending on the specific set of SNPs one has, it determines the severity and exact symptoms list one shows when in POIS.   This also would account for the fact that it seems to be more than just one type of POIS.

[Muon]

That means, that muscles that muscles get weaker when exposed to prolonged cold.

I've got exactly the opposite. The closest disease it resembles is Lambert Eaton myasthenic syndrome.
https://en.wikipedia.org/wiki/Lambert%E2%80%93Eaton_myasthenic_syndrome

''The weakness from LEMS typically involves the muscles of the proximal arms and legs (the muscles closer to the trunk). In contrast to myasthenia gravis, the weakness affects the legs more than the arms.''

''High temperatures can worsen the symptoms.''

Also my left half of my face can hang a bit when I'm tired or during POIS.
I had some strange events in the past like respiratory muscles that became weak spontanously for an hour, very hard to breath. During a summer I was close to some sort of gagg attack which I could prevent by laying down. Also had swallowing problems as a kid. Had more events like extreme decreasesd GI motility and digestion problems for short periods during hot days. Dysautonomia is present as well. Prolonged static postures is worse than moving around.

What is interesting about paramyotonia congenita is that it is a channelopathy.

Stiff muscles is something that is present in my familiy. I get it when resting, by POIS or heat. More so by resting after symptom triggering by POIS, heat or prolonged static postures/too much walking around(shopping, doing dishes).

A channelopathy might also be a plausible disease model for POIS, in which the sudden burst of hormones (prolactin) and blood pressure by orgasm may cause some impaired channel to be overloaded. Someone on the forum had genes for congenital myasthenia (=myasthenia caused by channel mutations) which is interesting, because such people may suffer from dysautonomia.

My cytokines become lower for a brief period after ejaculation. Cytokine release depends on calcium influx. It might be possible there is a weakened calcium influx during POIS. Other cells might be responding differently due to this like mast cells, T-cells etc.

The night before I got Bell's Palsy I drank alcohol and ate peanuts. I was also tired. A few days before I had visited a dentist as well. Not sure what factor led to this situation.

Oh and I had a low vitamin D level and a low total cholesterol level as well. I haven't check up on cholesterol again. My mother got high cholesterol values while she is skinny. I think I have typed too much and will stop here.

[Hopeoneday]

https://www.sciencedirect.com/science/article/pii/S1568997215000245

Glucose, salt, emulsifiers, organic solvents, gluten, mTG, and nanoparticles are extensively and increasingly used by these industries to improve the qualities of the food (as claimed by manufacturers and some consumers). However, all these food additives increase intestinal permeability by bringing about TJ paracellular transfer.


But the question is always just me, why only us
The pois would then be an epidemic!

Is gene expression in pois became
switched on
and stayed in switched on position???

Genetics plays a role in poisers i think.

When a rabbit farts in the forest,
i sneeze 10-15 times in a row,
the same like my mother.

[Muon]

when a rabbit farts in the forest,
i sneeze 10-15 times in a row,
the same like my modher.

When Rabbit farts are being thrown into the mix you know you are dealing with Dr. POIS (LOL).

Btw Mothers with atopy have a higher chance of getting kids who are more prone to allergies/sensitivities.
Something similar with T-regs: Impaired function of regulatory T cells in cord blood of children of allergic mothers

The innocent looking allergies/sensitivities some poisers have might be an indication we are dealing with dysfunctional Tregs or abnormal numbers. Animus has allergies, also some POIS papers state patients with atopy if I remember correctly.

[Fox]

Hi Fox, and welcome to the forum !
..
Talking about healthy gut, did you tried some probiotics supplements with both strains of lactobacillus and strains of bifidus ?..
...because taking potassium really helps with my fatigue, both for POIS and after physical...

No I did not try probiotics yet. Currently my GI- and POIS-symptoms are also very low. In my case gluten-free did the most change, perhaps clyndamycin helped a bit too. For a few years I tried gluten-free also without the same much difference perhaps due to bacterial overgrowth.

I eat 2-3 bananas each day as a source of potassium

Interestingly talking about potassium, I can induce some muscle weakness by eating too much liqorice (which is in these black candies). Liqorice has the potential to lower potassium. So potassium balance may be important also.

[b_jim]

Bad I get hemoragic diarrheas and yellowed stools. Bloodtest and stooltest in 7 days. Hope my liver is ok.

[Hopeoneday]

When Rabbit farts are being thrown into the mix you know you are dealing with Dr. POIS (LOL).

She is allergic even to the bark of the tree as soon as the juice begins to
the wood is flowing, and the bark is bursting.