Author Topic: Mast Cell Activation Syndrome  (Read 80759 times)

Hopeoneday

  • Hero Member
  • *****
  • Posts: 857
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

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
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

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
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

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
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

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
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

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
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

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
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

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
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

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
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 »

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Mast Cell Activation Syndrome
« Reply #90 on: February 15, 2020, 07:05:11 PM »
hurray, I couldn’t find it

Regards!

Thanks Demo :)


Many thanks, hurray, for your many contributions here over the years!
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

Quantum

  • Administrator
  • Hero Member
  • *****
  • Posts: 1634
Re: Mast Cell Activation Syndrome
« Reply #91 on: February 15, 2020, 09:08:29 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!


Hi Hurray,

For a list af natural mast cell stabilizers, see https://poiscenter.com/forums/index.php?topic=2372.msg19856#msg19856 .

At least 4 of them are part of the pre-pack that controls my POIS symptoms   (quercetin, green tea, curcumin, milk thistle, and L-theanine)

You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Mast Cell Activation Syndrome
« Reply #92 on: February 16, 2020, 12:49:56 PM »
What is the next step? Validate/invalidate the MCAS/POIS hypothesis via scientific testing? Do we have enough evidence to submit this for serious research?
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

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
Re: Mast Cell Activation Syndrome
« Reply #93 on: February 16, 2020, 05:26:11 PM »
What is the next step? Validate/invalidate the MCAS/POIS hypothesis via scientific testing? Do we have enough evidence to submit this for serious research?
I have no idea.

Well well well what do we have here, it seems mast cells express cannabinoid receptors:

Medical Cannabis & Mast Cell Activation Syndrome

Cannabinomimetic Control of Mast Cell Mediator Release: New Perspective in Chronic Inflammation

Anti-inflammatory potential of CB1-mediated cAMP elevation in mast cells

Mast cells express a peripheral cannabinoid receptor with differential sensitivity to anandamide and palmitoylethanolamide.

Differential Roles of CB1 and CB2 Cannabinoid Receptors in Mast Cells

Cannabinoid receptor 1 controls human mucosal-type mast cell degranulation and maturation in situ

I have tried a commercial CBD oil in 2019 for a short period of time but developed mucosal reactions in my throat from it and stopped for that reason while I felt a bit better systemically. This probably has to do with different types of mast cells and their ratio of CB1/CB2 receptor triggering or with the purity of content.
« Last Edit: February 16, 2020, 05:50:28 PM by Muon »

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 6091
  • All of us working together to defeat POIS!
Re: Mast Cell Activation Syndrome
« Reply #94 on: February 16, 2020, 05:29:17 PM »
What is the next step? Validate/invalidate the MCAS/POIS hypothesis via scientific testing? Do we have enough evidence to submit this for serious research?
I have no idea.
Anyone else? 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

Quantum

  • Administrator
  • Hero Member
  • *****
  • Posts: 1634
Re: Mast Cell Activation Syndrome
« Reply #95 on: February 16, 2020, 07:09:14 PM »
What is the next step? Validate/invalidate the MCAS/POIS hypothesis via scientific testing? Do we have enough evidence to submit this for serious research?
I have no idea.
Anyone else? Thoughts?

Obviously, for me, the next step in POIS research as a whole will depend on what is found by the upcoming NORD POIS study  :)
You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

hurray

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
Re: Mast Cell Activation Syndrome
« Reply #96 on: February 16, 2020, 07:19:21 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.

Good information, thanks. Have you tried Cromolyn nasal spray? It's available over the counter, although it may not be as effective as the oral version.

hurray

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
Re: Mast Cell Activation Syndrome
« Reply #97 on: February 16, 2020, 07:51:16 PM »

Hi Hurray,

For a list af natural mast cell stabilizers, see https://poiscenter.com/forums/index.php?topic=2372.msg19856#msg19856 .

At least 4 of them are part of the pre-pack that controls my POIS symptoms   (quercetin, green tea, curcumin, milk thistle, and L-theanine)

That's an excellent summary, thank you.

Fenugreek has been the main thing that has given me relief from POIS for several years now. I just did a little research, and I was surprised to find out that fenugreek seeds contain luteolin, quercetin and apigenin (3 of the stabilizers that you mention in your list):

Quote
Five flavonoid compounds were isolated from fenugreek seeds and identified as vitexin, tricin, naringenin, quercetin and tricin-7-O-beta-D-glucopyranoside.
https://www.ncbi.nlm.nih.gov/pubmed/11599360

Quote
A systematic study of the obtained MS spectra and the observed fragmentation showed that most of the identified compounds were acylated and non-acylated flavonoids with apigenin, luteolin and kaempferol as aglycons.
https://www.ncbi.nlm.nih.gov/pubmed/25393509

An interesting coincidence, or perhaps something else?
« Last Edit: February 16, 2020, 08:08:29 PM by hurray »

Muon

  • Hero Member
  • *****
  • Posts: 2632
    • MCAD Thread
Re: Mast Cell Activation Syndrome
« Reply #98 on: February 16, 2020, 07:57:00 PM »
No I didn't know the nasal spray was over the counter stuff.

My elevated CXCL8 (IL-8) could be a mast cell mediator. This paper also proposes a diagnostic algorithm for mast cell mediator disease. The principle is that you measure mast cell mediator profiles, could be unique from person to person:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7003574/figure/F1/

The shift in Th1/Th2 in my case could be caused by MC mediators interacting with Th cells.

The abnormalities of immunoglobulins seen in poisers could be caused by MC mediators affecting B-cells driving Igs up or down.

There is a high density of mast cells within the interface of the body and environment. This is also the first line of defense against infection. Mediators might alter local immune homeostasis in mucosal layers making you susceptible to local infection by opportunistic pathogens. You won't see systemic infections in poisers.

They could spill mediators in endocrine organs leading to abnormal hormone levels. Or the other way around an abnormal hormone balance leading to a lower threshold trigger level of mast cells. I'm curious whether mast cell stabilizers could bring hormone levels back to normal.

They might interact with oral taste receptors leading to a 'metallic' like taste.
« Last Edit: February 17, 2020, 09:15:45 AM by Muon »

hurray

  • Lab1
  • Sr. Member
  • **
  • Posts: 369
Re: Mast Cell Activation Syndrome
« Reply #99 on: February 16, 2020, 08:03:38 PM »
What is the next step? Validate/invalidate the MCAS/POIS hypothesis via scientific testing? Do we have enough evidence to submit this for serious research?

That's a very good question, Demo. I'd be interested to know how many members of this forum have had positive outcomes as a result of using mast cell stabilizers or similar.

What evidence do we have?  :)