Author Topic: Mast Cell Activation Syndrome  (Read 64964 times)

Muon

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Re: Mast Cells Activation Syndrome
« Reply #20 on: August 05, 2019, 12:02:18 PM »
Mast Cells in Gut and Brain and Their Potential Role as an Emerging Therapeutic Target for Neural Diseases

Describes gut-brain axis dysfunction. Introducing tryptophan producing microbiotica could be a therapeutic tool.

OpiesDad

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Re: Mast Cells Activation Syndrome
« Reply #21 on: August 16, 2019, 07:19:27 PM »
Guys this is it.  I would bet $100k bucks my POIS is a MAST cell activation related disorder.  I am booked to see a specialist next week.  As an aside, that linked presentation was brilliant.

Nas

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Re: Mast Cells Activation Syndrome
« Reply #22 on: August 16, 2019, 07:32:25 PM »
Guys this is it.  I would bet $100k bucks my POIS is a MAST cell activation related disorder.  I am booked to see a specialist next week.  As an aside, that linked presentation was brilliant.
Bet me, I'd use some of that 100k myself.
I bet you 100k it's not MCAS.

OpiesDad

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Re: Mast Cells Activation Syndrome
« Reply #23 on: August 16, 2019, 09:25:50 PM »
I'd need to see your proof of funds, and we'd put both in escrow, but yeah I'd bet.  :)

aswinpras06

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Re: Mast Cells Activation Syndrome
« Reply #24 on: August 17, 2019, 02:51:18 AM »
Hi OpiesDad

Even I am 100% sure it is mast cell activation disorder.  Only drawback is it is very complex problem only a few specialists understand and each one of us require individualised treatment.  Current biologic therapies for mast cell are promising and may soon reach mainstream medicine.  Once they are approved we can get rid of this monster.

Nas

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Re: Mast Cells Activation Syndrome
« Reply #25 on: August 17, 2019, 03:50:57 AM »
I'd need to see your proof of funds, and we'd put both in escrow, but yeah I'd bet.  :)
I don't have that much. Honestly if I had this amount I'd spend it on research for POIS. So if you actually have this amount why not help with research funding?

OpiesDad

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Re: Mast Cells Activation Syndrome
« Reply #26 on: August 18, 2019, 10:39:11 PM »
Nas, I promise when we have another research oppty I'm pitching in $$$.  In any event, I am meeting with a well regarded immunologist in LA this week who has background in mast cell conditions.  Let's pray for all of us that he takes an interest in the case and has a novel approach.....

Nas

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Re: Mast Cells Activation Syndrome
« Reply #27 on: August 19, 2019, 08:25:11 AM »
Nas, I promise when we have another research oppty I'm pitching in $$$.  In any event, I am meeting with a well regarded immunologist in LA this week who has background in mast cell conditions.  Let's pray for all of us that he takes an interest in the case and has a novel approach.....
An advise from me would be to spend money studying your brain chemistry. Study your brain pathways and neurotransmitters during POIS. That's in my opinion money well spent. You will need to gain access to PT/MRI for that, which will showcase changes in brain chemistry during POIS. It serves the purpose of knowing the mechanism through which POIS causes us the brain symptoms. PT/MRI is expensive so if you have money you'd do us a great service if you undertook one.

demografx

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Re: Mast Cells Activation Syndrome
« Reply #28 on: August 20, 2019, 10:48:04 AM »

...when we have another research oppty I'm pitching in $$$. 


Hello OpiesDad,

Wonderful to hear.

T H A N K   Y O U!

Demo
(on behalf of the entire Forum
and for POISers everywhere!)



« Last Edit: August 21, 2019, 01:54:16 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

aswinpras06

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Re: Mast Cells Activation Syndrome
« Reply #29 on: September 03, 2019, 10:14:57 PM »
Hi Nas

You've always said any mast cell medicine never worked for you,  but only Corticosteroids such as dexamethasone. Do you know that 

Corticosteroids such as dexamethasone are effective inhibitors of mast cell activation and a proven treatment for mast cell-associated diseases . In fact, it is recently found that dexamethasone inhibits not only IgE- but also IL-33-mediated mast cell function.

https://www.frontiersin.org/articles/10.3389/fimmu.2018.00868/full

Nas

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Re: Mast Cells Activation Syndrome
« Reply #30 on: September 04, 2019, 06:37:12 AM »
Dexamethasone is not really a cure so I stopped taking it. It helps a bit since it has a bit of psychoactive properties but other than that it doesn't stop POIS.

Muon

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Re: Mast Cells Activation Syndrome
« Reply #31 on: September 15, 2019, 02:55:57 PM »
Interesting video, a short Lecture by Professor Theoharis C Theoharides:
 
https://www.youtube.com/watch?v=HNNPsZlDTEQ

Interview, Episode #58: Mast Cell Master with Dr. T.C. Theoharides, PhD, MD:

https://www.youtube.com/watch?v=6gfTFwJgIVQ
« Last Edit: September 15, 2019, 03:21:16 PM by Muon »

Muon

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Re: Mast Cells Activation Syndrome
« Reply #32 on: October 23, 2019, 10:09:21 AM »

b_jim

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Re: Mast Cells Activation Syndrome
« Reply #33 on: October 24, 2019, 02:05:55 PM »
In USA, ketamine spray is for sale now for depression. It might be a potential cure for Pois.
We already talk about ketamine effect on tryptophan.

It seems ketamine blocks mast cells inflammatory activity.
If Pois works like mast cells syndrome, I think using the spray could be interesting.
 
Taurine + Choline = Anti-Pois
Lyme disease "cured" in 2020.

Guts

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Re: Mast Cells Activation Syndrome
« Reply #34 on: October 24, 2019, 05:19:46 PM »
I tried different NMDA recepter antagonist ( i think it was cant remember if its agonist or not )
Basically all kinds of ketamine analogues, I'm not that impressed, still had massive amounts of brainfog and itching.
It only helped depression, anxiety and neuropathy and probably gut function. It surely got rid of severe nerve pain in the spine

I would defo go for the ketamine nosespray, but i don't think its a cure especially at lower dosages

Muon

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Re: Mast Cells Activation Syndrome
« Reply #35 on: October 24, 2019, 06:23:29 PM »
There is communication between the Vagus nerve and intestinal mucosal mast cells. I wonder if there is communication between the same nerve and mucosal mast cells of the genitourinary system.

Muon

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Re: Mast Cells Activation Syndrome
« Reply #36 on: November 05, 2019, 12:34:24 PM »
I did send the following email to http://brain-gate.org :

Hello,

Would Dr. Theoharides be interested in investigating mast cell involvement in Post Orgasmic Illness Syndrome?
I'm a POIS patient myself and have a suspicion mast cell activation might play a role in this disease.

I'm thinking about setting up a crowdfunding project for this. Patients can be recruited from the poiscenter forum: https://poiscenter.com/forums/index.php

Paper: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5001999/

All Papers:
https://poiscenter.com/forums/index.php?topic=3127.0

Video:
https://www.youtube.com/watch?v=KrgZIkAEGW0

Patients also have all kinds of other sensitivites like food and environmental ones, some of these can actually trigger the same symptoms as POIS. There is also some overlap with autistic like symtpoms, avoiding eye contact etc.

Perhaps Dr. Theoharides could investigate this and report his findings in a paper. Study could be funded by community crowdfunding.

Best Wishes,
Muon

And received an answer from Dr. Theoharides himself:

''This is a very interesting topic.

See my somewhat related publications attached.

Unfortunately, I am presently trying to find funds to continue my mast cell research and cannot divert the focus.

Please keep me posted.

TCT.
''

The full articles he attached to his email:
 
- Genitourinary mast cells and survival
- Intimate Contact Could Be Dangerous for Your Health
- Neuroendocrinology of mast cells: Challenges and controversies
« Last Edit: March 01, 2020, 02:38:59 PM by Muon »

Hopeoneday

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Re: Mast Cells Activation Syndrome
« Reply #37 on: November 05, 2019, 01:50:30 PM »
Muon, nice moves.
Dr-pois.

demografx

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Re: Mast Cells Activation Syndrome
« Reply #38 on: November 05, 2019, 04:40:16 PM »
Muon, as you suggested, sent post to NORD researchers.
« Last Edit: November 05, 2019, 06:06:37 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 Cells Activation Syndrome
« Reply #39 on: November 08, 2019, 06:32:03 PM »
Apparently testosterone exerts an inhibitory effect on mast cells, thus TRT could act as a mast cell stabilizer. See table 1 in 'The neuroendocrinology of mast cells'
Didn't we have a few poisers who were using Progesterone with succes? Take a look at the table again, it's capable of exerting an inhibitory effect on mast cells as well.

Ok now, go to the supplementary data etable1: https://www.smoa.jsexmed.org/article/S2050-1161(18)30019-9/fulltext

Look at the hormone balance. Estradiol is high which is a mast cell stimulant at the same time Testosterone is low which is an inhibitor.

The net effect favors mast cell stimulation according to table 1 and figure 1 in 'The neuroendocrinology of mast cells'.

You might generalize this by every other imbalance in the body like dysbiosis(TLR) and other immune parameters which favors mast cell stimulation. Some people tend to be more sensitive to stimuli than other people. These people have less locks to unlock before getting triggered. Now these imbalances already unlock a few locks, the stronger the imbalance, the more locks will open up thus increasing the tendency for mast cells to react on stimuli and making you more sensitive.

Mast cells support autocrine actions. They can grow receptors on themselves by their own actions. Some imbalance in the body might grow receptors on genitourinary mast cells which let them act on molecules in seminal fluid.

The long lasting POIS reaction (days to weeks) could be explained by the autocrine actions which keeps positive feedback loops or self perpetuating loops intact.

Now to think of it this might explain my short lived dampening of arousal/precum exposure symptoms by strong orgasm before hell breaks loose after ejaculation as time goes by. Each hormone might have a different concentration vs time curves, the inhibitory ones might have the upper hand at the start of orgasm interfering with genitourinary mast cell activation by ejaculation. My POIS is heavier when orgasm is weak. There is a competition going on between orgasm and ejaculation while orgasm itself could be a double edged sword.

It could all lead to the same cell type but there could be hundreds of ways.
« Last Edit: November 08, 2019, 07:20:11 PM by Muon »