Author Topic: Mast Cell Activation Syndrome  (Read 26951 times)

Muon

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Re: Mast Cell Activation Syndrome
« Reply #240 on: June 18, 2020, 12:34:30 PM »

swell

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Re: Mast Cell Activation Syndrome
« Reply #241 on: June 18, 2020, 01:50:59 PM »
Great info Muon, though wondering on a different topic, whether mast-cell inhibition might not be good for Covid - since we need Innate immune system well optimized?

Recognizable:

https://www.youtube.com/watch?v=7oVK7NwLM14
POIS Free, 1+ yrs despite daily o's.
Pois symptoms: Peripheral (Skin: Urticaria, dryness, pale skin), Nerve weakness, Muscle weakness + Mental (CNS: Brain Fog, Irritation, Isolation, Speech lethargy, Anxiety).
Other conditions: ASD, ADD, GAD.

Clues

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Re: Mast Cell Activation Syndrome
« Reply #242 on: June 19, 2020, 10:31:50 AM »
Thanks for that video Muon, might show that to family members if/when I get a diagnosis.

Btw, I got my skin biopsy taken today by a dermatologist. I was really pleasantly surprised how much he knew about mast cell issues. He said based on my skin lesions he suspects it's not Mastocytosis, but that we'll know more or less for sure after we get the results. If it's not Mastocytosis we'll look into MCAS.

Waiting time for my endochrinologist is long, and it's even longer for this specialised dermatologist. So diagnosis might take a while, but they seem pretty determined to get there.
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Muon

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Re: Mast Cell Activation Syndrome
« Reply #243 on: June 19, 2020, 05:27:13 PM »
though wondering on a different topic, whether mast-cell inhibition might not be good for Covid - since we need Innate immune system well optimized?

Covid-19 activates pulmonary mast cells. You want to inhibit mast cells. I would not be surprised when Covid-19 induces additonal POIS symptoms in POISers.

aswinpras06

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Re: Mast Cell Activation Syndrome
« Reply #244 on: June 19, 2020, 10:53:48 PM »
Very frustrating, my omalizumab therapy postponed due to covid.  My lung condition is getting more worse and I think omalizumab therapy will be of little help for me.  But if it works it will be great news for all other poisers.  Hope god gives me at least that privilege.

Iwillbeatthis

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Re: Mast Cell Activation Syndrome
« Reply #245 on: June 23, 2020, 03:55:48 PM »
https://youtu.be/9QbZp3WcC1Q?t=1884

I haven't watched any videos of this doctor until today but Dr T. Theoharides understands MCAS and autism perfectly, he would be the best suited person to study POIS, its a shame he declined Muons request. He hits the nail on the head about brain allergy mast cell issues and autistic symptoms and I resonate deeply with his words. It's also a shame I live in a country like UK, which is supposed to be a developed country, where I've heard Mast cell doctors have stopped seeing MCAS patients because they find it too complicated to diagnose. The patient has no power in the UK because everything is government owned so it's impossible to get any kind of treatment or make any progress with the GPs and so called specialists. The licensing here means that doctors aren't allowed to prescribe anything unless its licensed to give for a specific condition and they only prescribe based on evidence. But if they don't recognise MCAS or POIS then they are unable to prescribe anything.

I have a hunch that prostaglandin is the mediator thats causing my problems as asprin helps my symptoms from showers  and POIS and I also have interstitial cystitis

Muon

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Re: Mast Cell Activation Syndrome
« Reply #246 on: June 24, 2020, 03:20:51 PM »
Dr T. Theoharides understands MCAS and autism perfectly, he would be the best suited person to study POIS, its a shame he declined Muons request.

People can sign up and try their luck here:

https://poiscenter.com/forums/index.php?topic=3328.0

Muon

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Re: Mast Cell Activation Syndrome
« Reply #247 on: June 27, 2020, 04:38:45 AM »
Very frustrating, my omalizumab therapy postponed due to covid.  My lung condition is getting more worse and I think omalizumab therapy will be of little help for me.  But if it works it will be great news for all other poisers.  Hope god gives me at least that privilege.

Send Quantum a message when it helps for POIS. Stumbled upon some alternatives for pulmonary mast cell activity:

"In the present study we have investigated an alternative approach for tryptase regulation. We show that the heparin antagonists Polybrene and protamine are potent inhibitors of both human lung tryptase and of recombinant mouse tryptase (mouse mast cell protease 6)."

Heparin Antagonists Are Potent Inhibitors of Mast Cell Tryptase

An Anti‐Siglec‐8 Antibody Depletes Sputum Eosinophils from Asthmatic Subjects and Inhibits Lung Mast Cells

"As reported by other studies, tryptase does not seem to parallel clinical response, although omalizumab reduces the potential reactivity of mast cells"

Timing of response and long term efficacy of Omalizumab in non-clonal Mast Cell Activation Syndrome: A case series

There are more papers where MCAS patients benefit from (low dose) omalizumab, here is one, response rate is quite high. It could be a potential option for POISers to try under supervision when everything else fails:

"The overall response rate was 78.2% with a very favorable safety profile."

Omalizumab Therapy for Mast Cell-Mediator Symptoms in Patients with ISM, CM, MMAS, and MCAS
« Last Edit: June 27, 2020, 04:44:27 AM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #248 on: June 27, 2020, 05:55:33 AM »
Short fragment about Covid-19:

Dr.Theoharides of Tufts University speaks to Yanna Darilis about his latest research on COVID19

This combination will be present in a new product called Viralprotek.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #249 on: June 28, 2020, 05:35:04 AM »
Also a 20 day antidepressant (visited a psychiatrist) course before that which I believe did no good and only worsened it, I was testing this as it works for many people here. To my horror, I got the most severe POIS symptoms. Severe headache, fatigue, blackouts. I don't have any body pains or any physical symptoms.
I've seen more people on this board with adverse reactions than people who benefit from antidepressants.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/table/Tab12/

hurray

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Re: Mast Cell Activation Syndrome
« Reply #250 on: June 28, 2020, 07:20:58 PM »
Also a 20 day antidepressant (visited a psychiatrist) course before that which I believe did no good and only worsened it, I was testing this as it works for many people here. To my horror, I got the most severe POIS symptoms. Severe headache, fatigue, blackouts. I don't have any body pains or any physical symptoms.
I've seen more people on this board with adverse reactions than people who benefit from antidepressants.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4903110/table/Tab12/


Your link only mentions SSRIs. There are several different kinds of antidepressants.

I've seen plenty of people on this board who benefit from antidepressants. Also, I thought SSRIs suppressed mast cell function?

https://www.jimmunol.org/content/200/1_Supplement/105.8
https://grantome.com/grant/NIH/R21-AI138494-01A1

demografx

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Re: Mast Cell Activation Syndrome
« Reply #251 on: June 28, 2020, 10:18:36 PM »

Your link only mentions SSRIs. There are several different kinds of antidepressants.


Correct.

I was on SNRI’s for a while.

Lexapro works for me today.
« Last Edit: June 28, 2020, 11:07:08 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 #252 on: July 02, 2020, 07:57:53 AM »
https://www.reddit.com/r/POIS/comments/hj9ddl/do_i_have_pois/

"The above are the main symptoms but other symptoms include: headache (which paracetamol does not improve), flushed face, sensitivity to heat/sweating and anxiety/worrying."

https://youtu.be/6gfTFwJgIVQ?t=1777

Antihistamines/NSAIDs:

https://www.reddit.com/r/POIS/comments/hjgzo0/treament_update/

https://www.reddit.com/r/POIS/comments/hj9135/antihistamines/

Muon

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Re: Mast Cell Activation Syndrome
« Reply #253 on: July 03, 2020, 02:59:19 PM »
https://www.reddit.com/r/POIS/comments/hkic2q/is_pois_caused_by_pathogens/

aquantiV:

"doesn't check out for me. My symptoms emerged when I was otherwise healthy. I was under a ton of social and school stress though at that time, so I wondered and sometimes still wonder if it is psychosomatic. But the evidence stacks against that too (thank god)"

Animus, did you experience any stress or were you in a stressful situation just prior to your development of POIS symptoms?

Hi Muon,
Great question... thank you for asking. Short answer: YES.  Lots of stress at the time when I developed POIS.
I was stressed out with life in New York City, and wanting to leave.  Also intense physical stress I think. What really triggered it for me, was when I took some herbal "male enhancement pills". They were designed to give more powerful erections, and more volume ejaculations. They also caused my testicles to grow twice their size, seriously.  They had a very bad effect on me for some reason.

So, as to your question, I don't know if you mean physical or mental stress. But at the time, I certainly had both.

Dr. Theoharides:

" Therefore, any type of stress by definition is likely to stimulate the mast cells directly or make them more responsive either to new triggers or whatever triggers a patient might have had to begin with."

"We published a paper a long time ago that stress meaning CRH we add CRH to human mast cells they become much more responsive to Mercury, for instance, okay. And this is an area that just not being discussed, that the mast cells must have some threshold that is being reset. Because I have so many patients who basically say, "Something happened, and all of a sudden I'm allergic or I respond to everything"
Ref

https://www.reddit.com/r/POIS/comments/gau9qf/did_you_exprience_any_changes_n_life_when_you/

POISFIGHTER:

"I'll say this. When I had surgery in May 2019 due to abdominal abscess and appendicitis, I was given loads of antibiotics and they checked my blood count and realised that by red blood cell count was very low. I was treated with Trihemic for a few weeks. During the time in the hospital, I also refrained from ejaculation, probably for about 3 weeks. When I left the hospital, I was able to ejaculate for 3-4 times per week with just slight body weakness after ejaculation. No other POIS symptoms were present. My POIS returned 8 months after."

I lost count how many times I encountered people on these boards having a history of some kind of anemia:

Common abnormalities in routine hematologic and serum chemistry tests found in the study population.

Squiggyzz

"I was exposed to mold since I used to live in section 8 housing. Had an allergy panel done last year and somehow I'm allergic to damn near everything. Like a bunch of trees, grass, corn, wheat, dogs, cats, dust mites, and etc. Surprisingly, no allergies to mold which also surprised the doctor. Also I wasn't allergic to all those things before, so something happened.

I was on antibiotics for awhile, but this was after I had pois symptoms already. Was on it long term because I had very bad acne when I was younger. Additionally I was getting frequent infections too, so was prescribed for those reasons as well.

I also have a history of asthma, bronchitis, and mild allergies (now my allergies are bad) . I remember going to the doctor as a kid and getting weekly shots. I still don't know what it was to this day. I do remember my mom telling me it was allergy shots. But wtf is allergy shots back in the early 90s? When I think back, I think these shots might have been what triggered it because I took them before I ever got pois.
"

Mast cells can activate the immune system leading to a hyperactive immune system which is unable to act optimally to infections. Below is another one:

https://www.reddit.com/r/POIS/comments/f8iuf4/severe_illness_following_ejaculation/

Timur_1332:

"Hi Guys, wonder if any of you have every observed this sequence of events.
Youre in a new place, or situation, lots of stressors.
You have been exposed to some infections but have no symptoms because of strong immunity.
You ejaculate.
You add a final stressor such as an intense gym work out.
BAM you come down with 2 degree fever and full symptoms of the infection you were exposed to.
"

meatball4u:

"Never had that happen to me. But stress is part of how I developed POIS."
« Last Edit: July 03, 2020, 04:33:55 PM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #254 on: July 04, 2020, 05:07:35 PM »
ajs

"I'm a woman and I have pois so I personally know it has nothing to do with allergy to seamen....I have been reading since the beginning and I remember that girlwind was very irritated by the moderater and I agree his ego and wanting to be right all the time was annoying and I really wish she did not leave...my pois turned into chronic fatigue and fibromyalgia and I could not digest anything and went to get food tested and my back welted up to everything but my blood work showed no allergies to food...I do know that my pois started after getting shingles....all the testing I've done and the only thing they have found were very high levels of antibodies to three different viruses."

Conditions Often Comorbid With Mast Cell Diseases