Author Topic: Mast Cell Activation Syndrome  (Read 143166 times)

demografx

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Re: Mast Cell Activation Syndrome
« Reply #420 on: October 31, 2024, 04:31:44 PM »

Or one part of poisers hawe MCAS but other part hawe
SACM (self activation cells must ;D).
MCAS = Marvelous Coitus Ache Syndrome? :-)

;D ;D
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Mast Cell Activation Syndrome
« Reply #421 on: October 31, 2024, 04:39:28 PM »


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


Good point, Berlin!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Mast Cell Activation Syndrome
« Reply #422 on: October 31, 2024, 05:06:36 PM »


…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.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Mast Cell Activation Syndrome
« Reply #423 on: October 31, 2024, 05:19:44 PM »

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


Hopeoneday, interesting!

Other forum members: your thoughts?
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Warrior

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Re: Mast Cell Activation Syndrome
« Reply #424 on: November 01, 2024, 07:04:05 AM »

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
« Last Edit: November 01, 2024, 07:09:53 AM by Warrior »
Nothing I say is medical advice. Always do your own research. Follow anything I say at your own discretion.
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Sisyphus

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Re: Mast Cell Activation Syndrome
« Reply #425 on: November 01, 2024, 09:47:47 AM »
@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

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Re: Mast Cell Activation Syndrome
« Reply #426 on: November 01, 2024, 01:30:10 PM »

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!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Mast Cell Activation Syndrome
« Reply #427 on: November 01, 2024, 01:46:17 PM »

@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! ;D ;D


« Last Edit: November 01, 2024, 04:05:54 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Progecitor

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Re: Mast Cell Activation Syndrome
« Reply #428 on: November 01, 2024, 04:13:16 PM »
@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
The cause is probably the senescence of sexual organs and resultant inducible SASP, which also acts as a kind of non-diabetic metabolic syndrome.

Sisyphus

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Re: Mast Cell Activation Syndrome
« Reply #429 on: November 01, 2024, 04:47:23 PM »
Thanks Demo for forwarding Dr. Tierney K. Lorenz's comment.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #430 on: November 01, 2024, 05:16:46 PM »
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

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Re: Mast Cell Activation Syndrome
« Reply #431 on: November 01, 2024, 05:54:45 PM »
Thanks Demo for forwarding Dr. Tierney K. Lorenz's comment.

Most welcome!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: Mast Cell Activation Syndrome
« Reply #432 on: November 02, 2024, 12:13:36 PM »
@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.
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Hopeoneday

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Re: Mast Cell Activation Syndrome
« Reply #433 on: November 02, 2024, 05:14:55 PM »
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.




« Last Edit: November 02, 2024, 05:56:19 PM by Hopeoneday »
Dr-pois.

demografx

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Re: Mast Cell Activation Syndrome
« Reply #434 on: November 03, 2024, 09:53:27 PM »

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]
« Last Edit: November 04, 2024, 04:02:27 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Muon

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Re: Mast Cell Activation Syndrome
« Reply #435 on: November 23, 2024, 05:36:42 AM »
Quote

My mom has Lupus and RA.

I had strep throat constantly as a child from ages 2-7. Was heavily on antibiotics in this timeframe


Muon, it would help the average forum reader here if you say what this - - and other similar posts - - means for their…..POIS.

Demo
« Last Edit: December 01, 2024, 11:08:10 AM by demografx »

sartre02

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Re: Mast Cell Activation Syndrome
« Reply #436 on: December 02, 2024, 01:21:46 PM »
@hopeoneday : claiming no chance for xolair to treat a non -autoimmune condition is out of line , what if they discover it has a multiple mechanisms of action? like NAC that turned out not only beneficial for cough but liver and MANY MORE... never say never

Hopeoneday

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Re: Mast Cell Activation Syndrome
« Reply #437 on: December 02, 2024, 05:36:28 PM »
Hi Sartre02, actualy i think complitly dioposite, you
misunderstend something.

Actualy I discovered xolair as potentilal treatment for pois
5-6 years ago. Later it was suscessifully tested on few poisers,
one under medical supervision, se here a MIRACLE:
https://poiscenter.com/forums/index.php?topic=4581.0
« Last Edit: December 03, 2024, 03:16:49 PM by Hopeoneday »
Dr-pois.