Author Topic: Mast Cell Activation Syndrome  (Read 64963 times)

Nas

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Re: Mast Cells Activation Syndrome
« Reply #60 on: February 12, 2020, 11:13:52 AM »
In my mind...mutations in genes of epigenetic regulators could be the cause. POIS symptoms could be ignited by any potential change in the body induced by sexual activity that is able to interact with mast cells. Mast cells are close to nerves and can tap into the CNS. God knows what it's doing from there on. The symptoms may not even come from the mast cells itself directly but from other cells by CNS signaling. These are my two cents, ask someone else and you will get a different answer. If gene mutations are involved people can be sorted into groups of mutations and those groups might respond to the same 'treatment'.
Genetic POIS sounds very reasonable given how rare POIS is. But the question that is left to be answered is, what is the bases for your POIS theory? The thing or things that convinced you the most that the culprit is Mast Cells? Since we don't know what cause the symptoms Orgasm or Ejaculation, what drove you into this conclusion as opposed to any other theory?

drop247

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Re: Mast Cells Activation Syndrome
« Reply #61 on: February 12, 2020, 11:43:53 AM »
It seems like every treatment that works for POIS also works for Mast Cell disease. Anti-histamines, NSAIDs, Quercetin, etc. How Niacin works towards mast cell induced POIS I'm not sure. Though I imagine the flushing might be emptying the cells acutely to leave them unable to react to orgasm.

Muon

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Re: Mast Cells Activation Syndrome
« Reply #62 on: February 12, 2020, 11:55:57 AM »
Most people seem to base their theory off of their own symptomatology, myself included. That's logical but they tend to go in-depth with it. You should not zoom in with this phenomena but observe it as broad as possible as in involving other cases and entire histories of patients.  I'm not concluding anything yet (although this is at the top of my list), that's why the words 'in my mind' come in as in thinking in that direction. You are saying orgasm or ejaculation but that was not what I was saying, I was generalizing even more, it can be either one of them or both plus more.

Environmental factors, diet (and I suspect age) seem to affect some poisers which could be related to epigenetic mechanisms. My family got overlap in symptomatology, other cases where family members not having POIS but some minor 'seemingly' unrelated symptoms hidden from the untrained eye. The rarity. Other triggers present causing strange symptoms in people. The sheer amount of symptoms people can have and diversity. They complement eachother basically in symptomatology when comparing it to all potential MCAD symptoms. They also don't have solely POIS and if they got other conditions it often seems mast cell associated conditions. Also the point what drop247 said about treatment, that's what I meant with complementing (as in adding) eachother.

Again in your question you say the 'thing' that convince you the most. It's not the thing but it's a collection of 'things' that comes forth from looking at it at an extreme wide angle in combination with up to date knowledge of mast cell diseases. But I'm not trying to convince people I'm just throwing my thoughts on the forum, actually I don't really care if people agree with this. It's like a tic of mine dumping info on this forum all the time, not sure why I'm still doing it though.
« Last Edit: February 12, 2020, 12:33:58 PM by Muon »

Muon

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Re: Mast Cells Activation Syndrome
« Reply #63 on: February 12, 2020, 12:12:33 PM »
It seems like every treatment that works for POIS also works for Mast Cell disease. Anti-histamines, NSAIDs, Quercetin, etc. How Niacin works towards mast cell induced POIS I'm not sure. Though I imagine the flushing might be emptying the cells acutely to leave them unable to react to orgasm.

Flushing from Niacin is actually PGD2 release from mast cells so you might have a point there (it was long thought to be related to histamine release but it's not, it's a PGD2/serotonin related mechanism). Niacin also did something to the synthesis of certain prostaglandins I believe.

This is also why spontaneous flushing is a big red flag for suspicion of MCAD, because of PGD2 release.
« Last Edit: February 12, 2020, 12:16:02 PM by Muon »

drop247

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Re: Mast Cells Activation Syndrome
« Reply #64 on: February 12, 2020, 12:45:30 PM »
Your contributions are valued Muon. I think I have other triggers for POIS symptoms as well. High histamine foods may be a trigger for me. Stress is for sure.

I just found that Taurine is a mast cell stabilizer too. B_Jim's treatment. Anything that increases GABA in fact is good for mast cells which could explain why I find some relief from anything GABAergic.

Hopeoneday

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Re: Mast Cells Activation Syndrome
« Reply #65 on: February 12, 2020, 02:27:34 PM »
We discussed a lot of mcas on the medicall test results page, then one member went to a lot of mcas specialists but couldn't get a diagnosis for mcas, but was later diagnosed with lyme disies.
https://poiscenter.com/forums/index.php?topic=2695.225
I am of the opinion that damaged intestines and digestion, with certain toxins and then with certain chronic infections, affect our immunity and the CNS.
DAO is the major histamine processor
https://mthfrsupport.com.au/2016/09/hnmt-cofactors-and-inhibitors/,
and after him comes HNMT.
Histamine in the brain HNMT:
https://selfdecode.com/blog/article/brain-histamine-hnmt-13

And to think that bad guts, toxins and pathogens (which can cause a cytokine storm), all of these together interfere with our immune system and have a POIS cascade.
Because some of us are known to have POIS triggers beyond ejaculation, and the worst is with.
« Last Edit: February 12, 2020, 02:43:01 PM by Hopeoneday »
Dr-pois.

Hopeoneday

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Re: Mast Cells Activation Syndrome
« Reply #66 on: February 12, 2020, 02:42:31 PM »
This is wery intresting that cromolyne sodium we sugested to test cured pois in this man.
https://poiscenter.com/forums/index.php?topic=3216.0;topicseen


Dr-pois.

Muon

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Re: Mast Cells Activation Syndrome
« Reply #67 on: February 12, 2020, 07:44:57 PM »
I feel better after midnight (just like my brother). Take a look at this again, see figure 1, melatonin:



Neuroendocrinology of mast cells: Challenges and controversies

Now compare to the circadian rhythm:



I bet the same concept could be applied to hormone change after/during orgasm, arousal etc.
« Last Edit: February 14, 2020, 09:50:30 AM by Muon »

Nas

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Re: Mast Cells Activation Syndrome
« Reply #68 on: February 12, 2020, 09:00:07 PM »
Most people seem to base their theory off of their own symptomatology, myself included. That's logical but they tend to go in-depth with it. You should not zoom in with this phenomena but observe it as broad as possible as in involving other cases and entire histories of patients......     
........my thoughts on the forum, actually I don't really care if people agree with this. It's like a tic of mine dumping info on this forum all the time, not sure why I'm still doing it though.

Ever since I was on this forum you struck me with your scientific accuracy and broad analysis, I was actually never expecting you to endorse any theory seeing how you take things broadly and at the same time precisely.
This is why I kind of trust your judgement. Seeing you convinced by a certain theory is no small thing.
I also saw connections with Mast Cells, but I didn't realize how much of a spectrum it is. I just thought it was purely a case of chugging anti-histamines and feeling better.
Also seeing itsmee's post about Cromolyn Sodium I'm kind of convinced to try it too. We'll see what it does.

drop247

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Re: Mast Cells Activation Syndrome
« Reply #69 on: February 13, 2020, 07:55:11 AM »
I feel much better in the evening too. Interesting that Quantum and Romies take 5-HTP in their prepack treatment which the body can convert into melatonin.

Spartak

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Re: Mast Cell Activation Syndrome
« Reply #70 on: February 13, 2020, 08:24:03 AM »
This is wery intresting that cromolyne sodium we sugested to test cured pois in this man.
https://poiscenter.com/forums/index.php?topic=3216.0;topicseen
Do you have any info could it be find somewhere in our region?
I googled but no success.


Out of mast cell stabilizers Quercetin with bromelain did nothing to my POIS , side effect was that outside of POIS it cuased me dull headache, brain fog paired with apathetic anxiety and discomfort around people.

If 5htp is included, I don?t think I have problem with Serotonin, so  outside of POIS it did not do much,  just makes me a bit hyped and excited and a bit obsessed about what others think of me and so.. but speaking of POIS just side effects .. makes me very sleepy during POIS , I can literally oversleep POIS without being able to wake up in the morning, and just cause that after typical 2 days of POIS I feel sleepy and anxious and uninterested to do anything for few more days.
« Last Edit: February 13, 2020, 10:56:21 PM by Quantum »
no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

Investigator

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Re: Mast Cell Activation Syndrome
« Reply #71 on: February 13, 2020, 09:21:12 AM »
Very interesting, I also feel better in the evenings during POIS attacks. I've always observed the seasonality (spring is worst, summer and winter are best), but never thought about the day cycle.
« Last Edit: February 13, 2020, 10:56:07 PM by Quantum »

Hopeoneday

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Re: Mast Cell Activation Syndrome
« Reply #72 on: February 13, 2020, 01:01:17 PM »
This is wery intresting that cromolyne sodium we sugested to test cured pois in this
Do you have any info could it be find somewhere in our region?
I googled but no success.
Unfortunately no, I couldn't find information anywhere if I could get cromolyne, even I didn't find anywhere to have a nasal spray.
In our area I tried to go to specialists, from neurologists, allergists ... they all sent me to a psychiatrist when I started listing the symptoms of MCAS. :)

Ivestigator, i think this wary from person to person, same like symtpmes in us.
« Last Edit: February 13, 2020, 10:55:53 PM by Quantum »
Dr-pois.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #73 on: February 14, 2020, 07:42:38 AM »
I have chronic stress but my testosterone is high/normal. I think it's more likely stress is causing mast cell degranulation. It's a known trigger for that. I used to self medicate with cannabis but can't anymore due to work. I just started Ashwaganda daily to see if it helps.

They do NOT degranulate by stress, they are getting activated by other means. In fact degranulation is rare compared to selective release ('activation'), which is more common behaviour. My skin on my forearms can slightly burn by acute stress, I bet this is mast cell activation (POIS can do the same).

Healthcare is completely stuck at the degranulation picture regarding mast cell activation diseases. It's possible people with chronic stress might have mast cells with a higher density of CRH receptors. Certain pathways are getting activated.

In MCAS certain pathways are getting activated unlike mastocytosis which is degranulation.

Two examples of papers that are mentioning stress and mast cells:

Critical role of mast cells in inflammatory diseases and the effect of acute stress

Neuroendocrinology of mast cells: Challenges and controversies

Also chronic stress might increase receptor densities of mast cells( these can be autocrine effects, meaning they can release mediators which act back on there own cell and alter receptor expression).

Example:

CRH (not from mast cells)---> increased Neurotensin receptor expression on mast cells

A little bit of neurotensin release in general can have a bigger impact on mast cells than usual. This will activate NT receptors.

Neurotensin can lead to ---> increase of CRH receptors

You will end up with an increase of CRH receptors. Making you more susceptible to stress. Mast cells themselves can even release CRH and can be used for the same sequence all the way at the top of the given example.

Mast cells can also release Substance P which can act back on the same mast cell and leading to an increase in CRH receptors on that same cell. Making you again more susceptible to stress. If there is some primary mast cell activation disorder then mast cells might release stuff like SP spontanously.

From my own experience I can fall into spirals of symptoms and I bet some similar mechanisms as described above are at play.

Source: Scroll all the way down to Table 8, autocrine effects and receptor expression:

Recent advances in our understanding of mast cell activation - or should it be mast cell mediator disorders?

Some Poisers here that had chronic stress prior to their POIS might have altered their mast cells in some ways making them act different than usual leading to POIS. That is why I was asking people if they had stress prior to their POIS and/or if they were more susceptible to stress during POIS.

Me and bluesbrother might share the same trigger. I got elevated IL-8, he got TNF-alpha elevated. If you go to table 4 of the last paper mentioned then IL-33 might be a shared immune trigger. People with elevated IL-33 which activate mast cells can respond well to certain steroids (via STAT5).

I'm not sure whether people get a grasp of what I am saying here.
« Last Edit: February 16, 2020, 07:28:42 PM by Muon »

Nas

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Re: Mast Cell Activation Syndrome
« Reply #74 on: February 14, 2020, 08:55:58 AM »
If POIS truly turns out to be a mast cells disease I believe this forum can add great amount of knowledge to the Mast Cells phenomena.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #75 on: February 14, 2020, 09:00:04 AM »
If POIS truly turns out to be a mast cells disease I believe this forum can add great amount of knowledge to the Mast Cells phenomena.

A mast cell disease and/or it could be possible there is a chronic trigger present that keeps activating the mast cell in a normal way (so not a primary MCAD) but chronic and persistent that it will alter itself in the long run and ending up acting differently, creating disease that way.

Maybe there could be something wrong with mast cells that they keep changing their phenotype. Symptoms would come and go. Developing symptoms out of the blue and disappearing spontaneously after another change in phenotype.
« Last Edit: February 14, 2020, 09:40:54 AM by Muon »

drop247

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Re: Mast Cell Activation Syndrome
« Reply #76 on: February 14, 2020, 09:48:27 AM »
My mistake, I thought degranulation and activation were the same thing.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #77 on: February 14, 2020, 10:09:42 AM »
My mistake, I thought degranulation and activation were the same thing.

Most people on this forum tend to think that way, that a mast cell trigger always leads to degranulation when it's being triggered. Degranulation is basically what happens in Allergic activation and mastocytosis, it's exploding handgrenade behaviour.

There are papers that go deep into all those release mechanisms. It's important people are aware of different release mechanisms.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #78 on: February 14, 2020, 02:58:50 PM »
Leptin is a stored mast cell mediator.

''Leptin acts on receptors in the lateral hypothalamus to inhibit hunger and the medial hypothalamus to stimulate satiety.''

https://en.wikipedia.org/wiki/Leptin#Hypothalamus

Poisers can complain about loss of appetite and/or early satiety after sexual related activity. IronFeather complains about this and got fever as well, the hypothalamus regulates body temperature. Are mast cells firing within the hypothalamus in these poisers?

Leptin itself can stimulate mast cells, see pic: https://poiscenter.com/forums/index.php?topic=2301.msg33094#msg33094

So could it create a positive feedback loop where it shifts equilibrium in body temperature? IronFeather gets fever for weeks on end, is this Perpetual motion of mast cells? https://en.wikipedia.org/wiki/Perpetual_motion

The POIS reaction itself in general could be perpetual motion of mast cells by autocrine effects.

I do remember I wrote something on this forum about leptin and testosterone, can't remember what it was about.
« Last Edit: February 14, 2020, 03:31:47 PM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #79 on: February 14, 2020, 04:04:58 PM »
My mistake, I thought degranulation and activation were the same thing.
You are not entirely wrong about stress causing degranulation though. See table 3. But this is physical stress applied to the cell itself.
« Last Edit: February 14, 2020, 04:08:53 PM by Muon »