Mast Cell Activation Syndrome

[demografx]

Or one part of poisers hawe MCAS but other part hawe
SACM (self activation cells must ).

MCAS = Marvelous Coitus Ache Syndrome? :-)

[demografx]

....and under the assumption that there is different POISes, maybe one of them is MCAS and the others are not...

Good point, Berlin!

[demografx]

…You could ask that same question [“why spend so much time on X?”] for the remaining [non-MCAS] topics as well, nothing has been proven [as a POIS-correlate] yet.

True, except that posts relating to
||our own *POIS* experiences|| (a very large number of posts, the majority perhaps) are most certainly and directly related to…POIS.

[demografx]

I think that we even now have evidence that pois is immune driven condition…

Hopeoneday, interesting!

Other forum members: your thoughts?

[Warrior]

I think that we even now have evidence that pois is immune driven condition…

Hopeoneday, interesting!

Other forum members: your thoughts?

I can't speak for others, but I am almost certain the cause of my POIS is a chronic infection. And chronic infections can cause all sorts of immunological conditions.

1) POIS lowers my neutrophils / causes neutropenia
2) My POIS/food sensitivity responds to Monolaurin (I think Monolaurin is fairly exclusive in it's medicinal benefits for the IMMUNE system, especially in regards to its antimicrobial properties)
3) POIS improves with D3 - D3 is a major nutrient of the immune system
4) Major food sensitivities -> gut is leaky -> why? -> systemic inflammation -> chronic infection
5) POIS depletes methyl donors -> chronic infections can deplete methyl donors

[Sisyphus]

@Warrior. Sounds possible. I tick the same boxes.

@Hopeoneday. Is there new evidence about (auto)immunity that we should know about?

Re MCAS, unlike Muon, I've only read about it at a surface level. I don't feel it's the theory which sticks out the most for my own case but maybe it does for others.

Personally, after 40 years of pois and a lot of head scratching I just don't know. Nor does my doctor. I know what the facts are about my own case and those are my symptoms and test results. When I read from this forum, what I observe is that my pois often differs from others so I tend to go with the theory that there might be more than one type of pois.

[demografx]

I think that we even now have evidence that pois is immune driven condition…

Hopeoneday, interesting!

Other forum members: your thoughts?

I can't speak for others, but I am almost certain the cause of my POIS is a chronic infection. And chronic infections can cause all sorts of immunological conditions.

1) POIS lowers my neutrophils / causes neutropenia
2) My POIS/food sensitivity responds to Monolaurin (I think Monolaurin is fairly exclusive in it's medicinal benefits for the IMMUNE system, especially in regards to its antimicrobial properties)
3) POIS improves with D3 - D3 is a major nutrient of the immune system
4) Major food sensitivities -> gut is leaky -> why? -> systemic inflammation -> chronic infection
5) POIS depletes methyl donors -> chronic infections can deplete methyl donors

Thanks, Warrior!

[demografx]

@Warrior. Sounds possible. I tick the same boxes.

@Hopeoneday. Is there new evidence about (auto)immunity that we should know about?

Re MCAS, unlike Muon, I've only read about it at a surface level. I don't feel it's the theory which sticks out the most for my own case but maybe it does for others.

Personally, after 40 years of pois and a lot of head scratching I just don't know. Nor does my doctor. I know what the facts are about my own case and those are my symptoms and test results. When I read from this forum, what I observe is that my pois often differs from others so I tend to go with the theory that there might be more than one type of pois.

Thanks, Sisyphus!

Personally, after 40 years of pois and a lot of head scratching I just don't know.

Sounds like me!

[Progecitor]

@Warrior. Sounds possible. I tick the same boxes.

@Hopeoneday. Is there new evidence about (auto)immunity that we should know about?

Re MCAS, unlike Muon, I've only read about it at a surface level. I don't feel it's the theory which sticks out the most for my own case but maybe it does for others.

Personally, after 40 years of pois and a lot of head scratching I just don't know. Nor does my doctor. I know what the facts are about my own case and those are my symptoms and test results. When I read from this forum, what I observe is that my pois often differs from others so I tend to go with the theory that there might be more than one type of pois.

There is also a pseudo-infection theory that may combine the two. The scientific evidence behind it makes this plausible.
https://poiscenter.com/forums/index.php?topic=4535.0

[Sisyphus]

Thanks Demo for forwarding Dr. Tierney K. Lorenz's comment.

[Muon]

Running a poll on the MCAS reddit. I had one set up years ago but was deleted right away by the mods. Does not tell you anything about the symptom dynamics though.
https://www.reddit.com/r/MCAS/comments/1ggl1xq/do_you_have_triggers_related_to_sexual_activity/

[demografx]

Thanks Demo for forwarding Dr. Tierney K. Lorenz's comment.

Most welcome!

[demografx]

@Warrior. Sounds possible. I tick the same boxes.

@Hopeoneday. Is there new evidence about (auto)immunity that we should know about?

Re MCAS, unlike Muon, I've only read about it at a surface level. I don't feel it's the theory which sticks out the most for my own case but maybe it does for others.

Personally, after 40 years of pois and a lot of head scratching I just don't know. Nor does my doctor. I know what the facts are about my own case and those are my symptoms and test results. When I read from this forum, what I observe is that my pois often differs from others so I tend to go with the theory that there might be more than one type of pois.

There is also a pseudo-infection theory that may combine the two. The scientific evidence behind it makes this plausible.
https://poiscenter.com/forums/index.php?topic=4535.0

Thanks, Progecitor.

[Hopeoneday]

Thanx. Well, I know it is easy to say "immune driven", but,
few years ago, while I resarching and collecting medicall data
on pois center etc, I  got an idea for xolair and wrote it here
...Guess what?
5-6 years later xolair successifuly get rid of pois in one patient
under medical supervision in Australia:
https://doi.org/10.1111/imj.80_16230
Later, poisers reported success to:
https://poiscenter.com/forums/index.php?topic=4581.0


"No chance" that xolair would help pois, if it is not immune
driven condition.
https://poiscenter.com/forums/index.php?topic=4422.msg49454#msg49454


From xolair, rapamycin, corticosteroids, hCG, testosterone,
progesterone, antihistamines, anti inflamatories...etc etc
All this when you taking it, act on immunity suppression
from different angles.
Maybe I am wrong, but this is evidence for me.

If we "get lucky" in incaming study, we will discover what
trigger pois, some underlying condition in the body,
allergy, autoimmunity, or something else.

[demografx]

I think that we even now have evidence that pois is an immune driven condition…

October 25, 2024



From: Dr. Tierney K. Lorenz
Principal Investigator
NORD: POIS Research Study
https://poiscenter.com/forums/index.php?topic=3006.0

”It depends on what we mean by "an immune driven condition." If Hopeoneday means there is sufficient evidence that the immune system is dysfunctional in POIS, I think that's certainly true - it would be hard to produce the symptoms of POIS without some involvement from the immune system. But the specifics are more murky - we don't really know if POIS is an autoimmune condition like IBS or MS, or closer to an allergic condition (like asthma), or something else entirely. That's a big goal of the research right now!

TKL”

[Above emphasis mine.
Demo]