Author Topic: Mast Cell Activation Syndrome  (Read 25783 times)

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 »

Hopeoneday

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Re: Mast Cell Activation Syndrome
« Reply #80 on: February 15, 2020, 03:34:54 AM »
I did posted this link before , but here again:
https://en.wikipedia.org/wiki/Mast_cell_activation_syndrome#Treatment

Common symptoms include:[4][8]

   
1.        Dermatological
        flushing
        hives
        easy bruising
        either a reddish or a pale complexion
        itchiness
        burning feeling
        dermatographism
2.    Cardiovascular
        lightheadedness, dizziness, presyncope, syncope, arrhythmia, tachycardia
3.    Gastrointestinal
        diarrhea and/or constipation, cramping, intestinal discomfort
        nausea, vomiting
        swallowing difficulty, throat tightness
4.    Genitourinary
        interstitial cystitis; burning in the bladder and urinary tract
5.    Psychiatric & Neurological
        brain fog, short term memory dysfunction, difficulty with recalling words
        headaches, migraines
        co-morbid psychiatric and behavioral symptoms as a result of mast cell mediators being released in the brain (i.e.: anxiety, depression, mood swings, etc.)
5.   Respiratory
        congestion, coughing, wheezing
        Nonallergic rhinitis with eosinophilia syndrome (NARES) [9]
        Obstructive Sleep Apnea
6.   Vision/Eyes
        ocular discomfort, conjunctivitis
        redness
7.    Constitutional
        general fatigue and malaise
        food, drug, and chemical allergies or intolerances (especially fragrances)
        Cold and Heat Intolerance
7.    Musculoskeletal
        osteoporosis and osteopenia are possible symptoms of mast cell activation disorders

I fit in 1. all (except flushing, hives easy ,bruising), 2.(all except syncope) 3.(all except vomiting), 4.(all except interstitial cystitis wich is unkown) 5.  all( except eosinophilia syndrome-unknown) 6. all (except unknown food and durg alergies)
7.unknown

This all fit in pois complete.

I like to call my pois reaction anaphylaxis wich meaning:
Anaphylaxis If too many mediators are spilt into a patient's system, they may also experience anaphylaxis, which primarily includes: difficulty breathing, itchy hives, flushing or pale skin, feeling of warmth, weak and rapid pulse, nausea, vomiting, diarrhea, dizziness and fainting.

So diagnosis are wery dificult beacause of non specific symptomes and diagnostic cryteria :
MCAS is often difficult to identify due to the heterogeneity of symptoms and the "lack of flagrant acute presentation."[8] The condition can also be difficult to diagnose, especially since many of the numerous symptoms are non-specific in nature. Mast cell activation was assigned an ICD 10 code (D89.40, along with subtype codes D89.41-43 and D89.49) in October 2016.
Dr-pois.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #81 on: February 15, 2020, 08:51:36 AM »
Yes, POIS is probably a symptom of a variant of MCAD (Mast Cell Activation Disease) and in our case HOD defined by genetic mutations. Your mother probably got MCAS as well and I bet we both share a genetic mutation. POIS is in my opinion not a new disease entity. It's a set of MCAD symptoms triggered by any changes sexual activity makes inside the body that potentially activates mast cells improperly is in my mind POIS. Could be hormone changes, urethral mast cell sperm contact etc.

You will see people including researchers still going in depth with symptoms, the answer is right in front of them. The symptoms individually are massive distractions. Good luck talking to a doctor about this. There are many things I can try but they will need a prescription and thus the help of doctors but they won't even listen. I have made an appointment in april with a former colleague of Waldinger and that's basically a last ditch-effort to make someone understand the disease, if that is not working I will call it a day.

It's probably trial and error in finding mast cell stabilizers at this point, at least for our cases. I don't see much point discussing it any further though.

hurray

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Re: Mast Cell Activation Syndrome
« Reply #82 on: February 15, 2020, 12:12:10 PM »
Yes, POIS is probably a symptom of a variant of MCAD (Mast Cell Activation Disease) and in our case HOD defined by genetic mutations. Your mother probably got MCAS as well and I bet we both share a genetic mutation. POIS is in my opinion not a new disease entity. It's a set of MCAD symptoms triggered by any changes sexual activity makes inside the body that potentially activates mast cells improperly is in my mind POIS. Could be hormone changes, urethral mast cell sperm contact etc.

You will see people including researchers still going in depth with symptoms, the answer is right in front of them. The symptoms individually are massive distractions. Good luck talking to a doctor about this. There are many things I can try but they will need a prescription and thus the help of doctors but they won't even listen. I have made an appointment in april with a former colleague of Waldinger and that's basically a last ditch-effort to make someone understand the disease, if that is not working I will call it a day.

It's probably trial and error in finding mast cell stabilizers at this point, at least for our cases. I don't see much point discussing it any further though.

Which mast cell stabilizer would you consider to be most likely to work in counteracting POIS?

I have a fairly sympathetic doctor who may be willing to write a prescription for me after talking through all the issues, but I want to be able to point her in the right direction.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #83 on: February 15, 2020, 12:46:50 PM »
Which mast cell stabilizer would you consider to be most likely to work in counteracting POIS?

I have a fairly sympathetic doctor who may be willing to write a prescription for me after talking through all the issues, but I want to be able to point her in the right direction.

There isn't any that is more likely to work than others yet, it varies from person to person. One stabilzer that blocks the entire mast cell is methoxy-luteolin but that one is being poorly absorbed by the body.

These patients are getting through an entire scheme of options by trial and error until you hit the right one. Some meds need to be taken weeks to months before you start seeing any effect. And sometimes multiple ones have a minor effect and a stack is being created.

Here is an example of that which you could show to your doctor, click on download: https://www.tandfonline.com/doi/suppl/10.3109/07853890.2016.1161231?scroll=top

Quantum posted another one here that goes more into flavonoids:
https://bpspubs.onlinelibrary.wiley.com/doi/full/10.1111/bph.12138

The more important papers about MCAS itself are on page 4 of this thread. Some papers in literature give similar therapeutical option schemes/algorithms. Also other triggers need to be avoided or minimized.

If I had to make a top 3 of papers in descending order that I would recommend to a doctor then it would be like this:

1) Often seen, rarely recognized: mast cell activation disease - a guide to diagnosis and therapeutic options

2) Characterization of Mast Cell Activation Syndrome

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

The first paper also proposes the following diagnostic criteria, table 2:

1) Major criteria 1 + Major critera 2

Or 2) Major criteria 2 + at least one minor criterion
« Last Edit: February 16, 2020, 07:29:14 PM by Muon »

hurray

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Re: Mast Cell Activation Syndrome
« Reply #84 on: February 15, 2020, 05:18:41 PM »
Thank you, there are a number of interesting candidates for a mast cell stabilizer in your links.

Quote
One stabilzer that blocks the entire mast cell is methoxy-luteolin but that one is being poorly absorbed by the body.

Which pharmaceutical company manufactures methoxy-luteolin? Or is it available in supplement form?

I need to be able to give my doctor an option that is somewhat easy to obtain.


Muon

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Re: Mast Cell Activation Syndrome
« Reply #85 on: February 15, 2020, 05:52:11 PM »
Which pharmaceutical company manufactures methoxy-luteolin? Or is it available in supplement form?
I need to be able to give my doctor an option that is somewhat easy to obtain.

I think methoxy-luteolin is not available yet, it is used in research. I don't want to promote products here but there is a company that makes flavonoid based supplements with high purity. Easy to obtain but expensive though: https://algonot.com/neuroprotek/

Your doctor should be able to obtain most of the meds listed in the word file.

demografx

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Re: Mast Cell Activation Syndrome
« Reply #86 on: February 15, 2020, 06:08:13 PM »
hurray, I couldn’t find it

Regards!
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

hurray

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Re: Mast Cell Activation Syndrome
« Reply #87 on: February 15, 2020, 06:12:14 PM »
Which pharmaceutical company manufactures methoxy-luteolin? Or is it available in supplement form?
I need to be able to give my doctor an option that is somewhat easy to obtain.

I think methoxy-luteolin is not available yet, it is used in research. I don't want to promote products here but there is a company that makes flavonoid based supplements with high purity. Easy to obtain but expensive though: https://algonot.com/neuroprotek/

Your doctor should be able to obtain most of the meds listed in the word file.

That supplement looks like a good possibility. Have you tried any mast cell stabilizers yourself? If so, how effective were they?

Perhaps mast cell stabilizers could end up helping us to overcome our POIS symptoms!

hurray

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Re: Mast Cell Activation Syndrome
« Reply #88 on: February 15, 2020, 06:23:58 PM »
hurray, I couldn’t find it

Regards!

Thanks Demo :)

I too was struggling to find it, apart from a possibility from an expensive company selling research chemicals. I'm interested in finding some options that are either supplements or generally available medicines, Muon has already given one good example.

https://poiscenter.com/forums/index.php?topic=3216.msg33034#msg33034

itsmel's successful reports of using Cromolyn Sodium sound like one promising possibility.
« Last Edit: February 15, 2020, 06:29:18 PM by hurray »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #89 on: February 15, 2020, 06:51:32 PM »
I'm wanting to try cromolyn for the last 5 years but I need a prescription. Anti-histamines have a minor effect on my POIS symptoms. Also they have used I believe it was a steroid injection in my leg in the past with good results but short lived. I'm unable to retrieve what they have used. The neuroprotek has to be built up towards 3 times a day 2 capsules I believe, have to look it up I'm not sure, but that's pretty expensive. You will have to pump your system full of it, keeping the concentration constant for the entire day, and observe what it does in the long run. It's not a matter of taking a capsule prior to your O. No I haven't tried any flavonoids. Oh and I have tried montelukast but that did nothing.
« Last Edit: February 15, 2020, 07:34:09 PM by Muon »