Mast Cell Activation Syndrome

[Muon]

Recognizable:

https://www.youtube.com/watch?v=7oVK7NwLM14

[swell]

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

[Clues]

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.

[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?

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]

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]

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]

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]

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

[Muon]

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]

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]

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]

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.

[Muon]

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]

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."

[Muon]

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

[hurray]

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

Interesting that she mentions fibromyalgia. A drug specifically designed to help fibromyaglia sufferers has helped me to get rid of my POIS.

https://poiscenter.com/forums/index.php?topic=3312.0

Drugs that deal with brain fog in fibromyalgia - milnacipran

We recommend milnacipran as the first-line medication for FMS patients who rate Fatigue and/or Fibrofog as the symptoms that are most limiting for them. This recommendation is based on our clinical experience and the fact that milnacipran is the only FDA approved FMS treatment shown to improve symptoms of fatigue and cognitive dysfunction in phase 3 clinical trials

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3004654/

[Vandemolen]

My excellent doctor found a POIS study using Cromolyn on Pubmed. He said it was only 4 patients and the drug helped only half of them. He prescribed Nalcrom to me to try for a month. I had to have the pharmacy order it because it's not commonly used in Canada. I'll have it in the next day or two to try out and I'll report back. It's very expensive too but luckily my insurance covered it. A 4 week supply was over $400.

My POIS doctor gave me Nalcrom for two months. I hope it will help.

[demografx]

Good luck, Van!

[Vandemolen]

Thanks! There is delay because all the Dutch pharmacies do not have Nalcrom for at least two weeks. I do not know why.

[Muon]

Interesting that she mentions fibromyalgia. A drug specifically designed to help fibromyaglia sufferers has helped me to get rid of my POIS.

Milnacipran increases bioavailability of norepinephrine in the brain which can inhibit mast cells.

The mast cell can be manipulated by giving them neurohormonal triggers (Ref). One may drive the MCs away from a stimulatory state towards a more calmer/inhibitory state by shifting the 'balance' of the parameters below, that is, increasing parameters with a downward arrow next to them and/or decrease parameters that have an upward arrow next to them.

↑ = Mast cell stimulation
↓ = Mast cell inhibition

Trigger   Effect

Circadian hormones

Melatonin   ↓

Growth factors

BDNF   ↑
Insulin‐like growth factor‐1   ↑
Neurotrophin‐3   ↑
NGF   ↑
PDGF   ↑
SCF   ↑

Metabolic hormones

Leptin   ↑

Neuropeptides

Adrenomedullin   ↑
CGRP   ↑
Hemokinin‐A   ↑
Neurotensin   ↑
PACAP   ↑
PTH   ↑
Somatostatin   ↓
SP   ↑

Neurotransmitters

Acetylcholine   ↑
Dopamine   ?
Epinephrine   ↓
GABA   ↓
Histamine   ↓
Norepinephrine   ↓
Serotonin   ?

Pheromones

Oxytocin   ?

Pain peptides

Enkephalins   ↑
β‐Endorphin   ↑

Sex hormones

Oestrogen   ↑
Gonadotrophins   ↑
Progesterone   ↓
Testosterone   ↓

Stress hormones

ACTH   ?
CRH   ↑
Cortisone   ↓
Urocortin   ↑

Vascular peptides

Endothelin   ↑
VEGF   ?
VIP   ↑