Author Topic: Mast Cell Activation Syndrome  (Read 54266 times)

Muon

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Re: Mast Cell Activation Syndrome
« Reply #200 on: May 12, 2020, 03:53:23 AM »
I wish you much strength aswinpras. Perhaps, in the meantime, your doctor could give you a lighter medicine to try which is readily available to win you some time until june. I'm sorry you have such a hard life.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #201 on: May 18, 2020, 12:42:05 PM »
Postorgasmic illness syndrome: potential new treatment options for a rare disorder

"The patient has a history of irritable bowel syndrome (IBS) well-controlled on loperamide."

IBS is often seen in MCAD patients. Also I found this regarding loperamide:
"Associated diarrhea can be treated with an oral histamine 2 receptor antagonist and loperamide. Ranitidine was administered to diminish the effects of her small-bowel mast cell burden, and loperamide, an opioid agonist, was administered to decrease the activity of the myenteric plexus, thereby slowing gastrointestinal transit." Ref

"He is otherwise in excellent health with an unremarkable physical examination."

That's what you will see in MCAD patients, they appear healthier than would be expected from their litanies of complaints.

"...and gastrointestinal symptoms beginning immediately after orgasm."

POIS could trigger activation of GI mast cells resulting in GI symptoms.

"A trial of antihistamine had good effect on his gastrointestinal symptoms"

Again, an indication that he could be dealing with mast cell activation in his GI tract.

"We also hypothesize that symptoms in this patient were related to sympathetic dysregulation, a new theory for potential pathogenesis of this disease."

I don't see many autonomic related symptoms in this patient. Other patients that do express relatively more autonomic symptoms could be explained by mast cell mediators interacting with autonomic nerve endings since mast cells abut neurons.

"...and alpha-blocker administration resulted in marked improvement of almost all symptoms."

α1-Adrenergic Receptor Blockade by Prazosin Synergistically Stabilizes Rat Peritoneal Mast Cells

"This study provided electrophysiological evidence for the first time that adrenaline dose-dependently inhibited the process of exocytosis, confirming its usefulness as a potent mast cell stabilizer. The pharmacological blockade of α1-adrenergic receptor by prazosin synergistically potentiated such mast cell-stabilizing property of adrenaline, which is primarily mediated by β2-adrenergic receptors."
« Last Edit: May 18, 2020, 01:07:16 PM by Muon »

demografx

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Re: Mast Cell Activation Syndrome
« Reply #202 on: May 19, 2020, 03:23:03 PM »
I assume you saw the old MCA reply by the researchers at the reddit forum?
« Last Edit: May 19, 2020, 03:38:10 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 #203 on: May 19, 2020, 03:53:45 PM »
I assume you saw the old MCA reply by the researchers at the reddit forum?

If you mean the reply below then yes.

Tyrone737:
"Do you happen to know if this study will be looking at mast cell activation as a potential element in POIS?"

POIS_Scientist:
"We cannot disclose the specifics of what we are collecting, as this could influence participant responses. This may sound strange given that this is a biomarker, but even the expectation of having a system measured can change that system. Of course, we absolutely tell you all the things that we will ask you to do prior to asking you to come in for the study itself...no surprises!...but some of the specifics about what we are testing we should not disclose to avoid reactivity. Thanks for your question."

Dumping some papers here which I will take a look at later:

Immunocompetence, mast cells and sexual behaviour

GnRH, brain mast cells and behavior

Brain mast cells link the immune system to anxiety-like behavior

demografx

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Re: Mast Cell Activation Syndrome
« Reply #204 on: May 19, 2020, 04:23:56 PM »
Yes, that’s it, good. Just wanted to make sure you saw it.
« Last Edit: May 19, 2020, 05:37:10 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 #205 on: May 22, 2020, 03:34:15 PM »
The Gene Food Podcast: Episode 15 - Featuring Dr. Theoharis Theoharides:

Mast Cells, Autism, and the Immune System with Dr. Theoharis Theoharides

Below are some snippets from the video link above.

https://youtu.be/37GtfXOP8dw?t=765

Dr. Theoharides:

"And then what happens is some of the molecules that we don't commonly discuss that are secreted from the mast cells act back on the mast cells. For instance, Corticotropin-releasing hormone is the main hormone released under stress from the hypothalamus in the brain. Yet, we published that human mast cells release more CRH than even the brain. And what happens is we also published that the mast cells have high affinity, very strong receptors for CRH. So if CRH is released after the mast cells have actually been activated, it will be released it will act back on the mast cells. So what happens is the mast cell grows even more receptors for CRH. So the mast cells now are much more susceptible to stress"

"And in fact, we publish papers where we measured CRH the stress hormone in the blood with patients to whom were given some decongestant State-Trait Anxiety Inventory, that within 34 questions are so gives you an idea how stressed individuals are. And CRH was very high in the blood and it was a very strong correlation with anxiety. So we know that. 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"

Reminds me of some members who had stress prior to their POIS like Animus and suddenly develop POIS.
« Last Edit: May 22, 2020, 04:02:15 PM by Muon »

Spartak

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Re: Mast Cell Activation Syndrome
« Reply #206 on: May 22, 2020, 06:38:31 PM »
Scientific part about Mast Cell is way above my understanding of medicine, but seems like a subject that should not be ignored in any of the future POIS studies.
no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #207 on: May 23, 2020, 01:48:48 PM »
I get a bit of "stuck feeling" and tightness in lower back too when stressed.

Yep me too. I think it correlates with some of my cognitive symptoms as well. E.g.: If I play a hectic videogame for a couple of hours, my lower back (probably psoas), hamstrings and glutes are all tight and aching, and my articulation and OCD get a bit worse.

"Computer-induced stress enhanced allergen specific responses with concomitant increase in plasma SP levels in patients with AD [182]. Similar findings with increased plasma levels of SP, VIP and NGF, along with a switch to a Th2 cytokine pattern, was reported in patients with AD playing video games [183]. " Mast cells and inflammation

Muon

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Re: Mast Cell Activation Syndrome
« Reply #208 on: May 24, 2020, 07:53:11 AM »
Postorgasmic Illness Syndrome (POIS) in a Chinese Man: No Proof for IgE-Mediated Allergy to Semen

Mast cell related problems are all over the place in this paper.

"A 61-year-old male visited our allergy department complaining of flu-like symptoms after ejaculation (including spontaneous ejaculations, masturbation, and intercourse) over 40 years. The symptoms began 60 minutes after ejaculation and were ranged from severe to moderate, mainly including extreme fatigue and exhaustion, feelings of extreme dryness-heat inside the body (particularly in the lower right back region), perspiration, muscle tension in the lower limbs, difficulty concentrating, general irritability, memory problems, foggy feeling in the head, nasal congestion, sneezing and running nose, sore throat, itching eyes, and photophobia."

The combination of these multisystem symptoms expose potential involvement of mast cell activation/release. Nothing mysterious about it when you consider MCAD.

"Waldinger et al. [5], 26 (58%) reported an atopic constitution, similar to other reported cases [4]."

Atopy points to mast cell problems.

"The relationship between POIS and mental disorders has not been defined."

Mast cells may bridge those two.

" Difference in the skin reactions to seminal fluid may be explained by the different grading systems and skin test procedures used."

Or due to different mast cell phenotypes and/or different (normal) mast cell reactivity.

"Human seminal plasma has a variety of inflammatory cytokines and chemokines including TGFβ1, CXCL8 (ex-IL-8), GRO (CXCL1/Th17), monocyte chemotactic protein 1 (MCP-1), IL-13, and IL-17 [11], some of which can activate basophils or mast cells; for example, Conti et al. [12] showed that MCP-1 has chemotactic activity for mast cells and plays a fundamental role in the release of histamine."

RED ALERT! They might be heading in the right direction here. Someone needs to give these guys a push in that direction. Also there are tons of potential triggers in seminal fluid which may activate mast cells like neuropeptides. If mast cell chemotactic activity is at work here you would expect mast cell infiltrates in the mucosal layer of the genitourinary system. The increased prevalence of POIS in men relative to women may be explained by the extra amount of potential mast cell triggers which reside in seminal fluid.

There are multiple POIS case reports where patients have rhinitis:
"Neurotrophins like NGF represent prime candidates in upper airway pathophysiology in allergic rhinitis" Ref
« Last Edit: May 24, 2020, 01:21:56 PM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #209 on: May 24, 2020, 02:22:44 PM »
Personally, I have an inflamed/painful mouth feeling one day(?) after O.

Independant of that I also have diagnosed peridontal disease without pain (and bleeding gums if I don't take care).

Table 1: Oral/oropharyngeal---> pain and dental decay. Ref

https://youtu.be/lrKqlv6VK_w?t=3388

If pain is burning:

Neuropeptides in Saliva of Subjects With Burning Mouth Syndrome: A Pilot Study

"NGF peptide and tryptase activity were shown to be significantly and persistently higher in saliva of BMS subjects, with respect to control values."
« Last Edit: May 24, 2020, 02:29:48 PM by Muon »

Clues

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Re: Mast Cell Activation Syndrome
« Reply #210 on: May 25, 2020, 05:25:48 AM »
"Computer-induced stress enhanced allergen specific responses with concomitant increase in plasma SP levels in patients with AD [182]. Similar findings with increased plasma levels of SP, VIP and NGF, along with a switch to a Th2 cytokine pattern, was reported in patients with AD playing video games [183]. " Mast cells and inflammation

Wow, that's very interesting! I do have itchy rashes here and there that may be atopic dermatitis. I'm waiting for a biopsy of these, should be interesting.

A bit saddening to know as I love video games, and it's a good way to stay in touch with remote friends during the pandemic. But ultimately always good to know more. Thanks Muon. :)

Clues

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Re: Mast Cell Activation Syndrome
« Reply #211 on: May 25, 2020, 07:16:42 AM »
Found this study which compares the effectiveness of Quercetin and Cromolyn Sodium in blocking mast cell cytokine release:

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/

Quercetin sounds really promising for symptom management, any thoughts on this Muon?

Muon

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Re: Mast Cell Activation Syndrome
« Reply #212 on: May 25, 2020, 09:39:53 AM »
Some members are using Quercetin. I've haven't read that paper but I have read some comments about it in other papers. But they think Cromolyn can calm down nerve fibers as well and could have additional indirect ways of inhibiting the mast cells in humans. As far as mast cell inhibitory properties go it's like this, starting with the best one:

Tetramethoxyluteolin >> Luteolin > Quercetin > Cromolyn

The problem with the first one is that it doesn't get absorbed by the body. They haven't found a way yet. The author of that paper helped making supplements. Scroll down to the algonot link: https://poiscenter.com/forums/index.php?topic=3236.msg33462#msg33462

Tetramethoxyluteolin is only being used in the Gentlederm product for skin problems. That one might also be useful to Dermatologists when other products fail. The other products are liposomal formulations. Similar products on the internet don't state the purity of the active ingredients and they are full of fillers.

A new one is coming up: "A new dietary supplement to be available soon combines luteolin, quercetin, and eriodictyol (ViralProtek, proprietary formulation, patent pending) to achieve the maximal benefit of these flavonoids." Ref

Hmm didn't know the hydroxyl groups at the structure with the two carbon rings made the difference (at the end of the paper you posted).



Quercetin:


Eriodictyol:


There is also a problem with getting sufficient Luteolin into the brain.



More properties of flavonoids:

The Role of Quercetin, Flavonols and Flavones in Modulating Inflammatory Cell Function

Flavonoids Inhibit COX-1 and COX-2 Enzymes and Cytokine/Chemokine Production in Human Whole Blood

"IFN- is an important cytokine that has been implicated in the pathogenesis of a variety of autoimmune and chronic inflammatory conditions systemic lupus erythematosus, type I diabetes mellitus, adjuvant-induced arthritis [1]. All the selected flavonoids were effective inhibitors of the IFN- production, percentages higher than 60 %, for 25 μM. Luteolin 4e was the best one inhibiting the production almost completely (Fig. 4). Once more, the presence of OH groups in A ring appeared as an important feature to the activity as flavonoid 1d was once more the less active."

"In accordance with the literature, in this work, luteolin 4e was the most active flavonoid in the inhibition of almost all cytokines, IL-6, IFN- , and TNF-α, which makes this flavonoid a promise in the modulation of the inflammatory process."
« Last Edit: May 25, 2020, 01:46:49 PM by Muon »

Clues

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Re: Mast Cell Activation Syndrome
« Reply #213 on: May 26, 2020, 01:28:12 AM »
Some members are using Quercetin. I've haven't read that paper but I have read some comments about it in other papers. But they think Cromolyn can calm down nerve fibers as well and could have additional indirect ways of inhibiting the mast cells in humans. As far as mast cell inhibitory properties go it's like this, starting with the best one:

Tetramethoxyluteolin >> Luteolin > Quercetin > Cromolyn

That is super helpful Muon, thank you yet again for your advice and citations!

Part of the reason I was excited about Quercetin is that I can obtain it myself at a reasonable cost with no prescription etc. Whereas Cromolyn will be a hurdle I think.

Excited to learn about Luteolin as well. The only supplement I found that ships to Norway was Swanson Luteolin Complex. It's 50 mg Luteolin and 50 mg Rutin per serving. The Rutin is supposed to help the bioavailability of the Lutelin according to the manufacturer. Any thoughts on this?

Also I saw you can get Quercetin Phytosome now, which ostensibly has much better bioavailability.

Nas

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Re: Mast Cell Activation Syndrome
« Reply #214 on: May 26, 2020, 02:26:44 AM »
Some members are using Quercetin. I've haven't read that paper but I have read some comments about it in other papers. But they think Cromolyn can calm down nerve fibers as well and could have additional indirect ways of inhibiting the mast cells in humans.
The problem with Chromolyn, just like with Tetramethoxyluteolin, that it can not be absorbed in the blood stream, regardless of actually passing through the Blood-Brain barrier and reaching the nerves.
I've tried Quercetine and luteolin, both, multiple times and they didn't even make a dent. You'd think they'd at least have x percent effect but not at all. If Mast Cells are indeed involved, there must be a therapeutic proof and until now I haven't had success with any.

berlin1984

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Re: Mast Cell Activation Syndrome
« Reply #215 on: May 26, 2020, 04:21:17 AM »

Clues

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Re: Mast Cell Activation Syndrome
« Reply #216 on: May 26, 2020, 04:24:30 AM »
I've tried Quercetine and luteolin, both, multiple times and they didn't even make a dent. You'd think they'd at least have x percent effect but not at all. If Mast Cells are indeed involved, there must be a therapeutic proof and until now I haven't had success with any.

OK. Even though I'm about 80% certain I've got some sort of mast-cell-related disorder/disease, it might not be the same one you have, and I've heard reports from others seeing improvement with flavonoids, so I'll continue experimenting.

Did you try Cromolyn as well btw?

There seem to be (supplement) forms of quercentin that claim to improve absorbtion..

Yep, that's the one I mentioned as well berlin1984. Sounds promising, has anyone tried it?

Nas

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Re: Mast Cell Activation Syndrome
« Reply #217 on: May 26, 2020, 04:45:09 AM »
Did you try Cromolyn as well btw?
I haven't but I mostly suffer from brain symptoms so they're not gonna help even if I tried.

Clues

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Re: Mast Cell Activation Syndrome
« Reply #218 on: May 26, 2020, 06:27:21 AM »
I haven't but I mostly suffer from brain symptoms so they're not gonna help even if I tried.

OK, what do you base that on though? Not saying you're wrong, just curious. FYI there was someone on the forum, can't remember which thread, who said his brain fog was massively reduced by Cromolyn.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #219 on: May 26, 2020, 08:01:11 AM »
The only supplement I found that ships to Norway was Swanson Luteolin Complex. It's 50 mg Luteolin and 50 mg Rutin per serving. The Rutin is supposed to help the bioavailability of the Lutelin according to the manufacturer. Any thoughts on this?

Also I saw you can get Quercetin Phytosome now, which ostensibly has much better bioavailability.

It's actually the quercetin that helps with the bioavailability of Luteolin. Rutin is Quercetin bound to sugar. It will be cleaved in the gut by certain microbes. I remembered that it keeps enzymes/microbes busy metabolizing Rutin/Que while most of the Luteolin can slip passed them.

Quercetin:

Rutin:


1)The Swanson product doesn't seem to state in what form the luteolin comes along.
2)It doesn't state the purity of the active ingredients
3)It isn't hypo-allergenic
4)It's relatively cheap because they use peanut shells as source.

Neuroprotek gives more product information but is quite expensive. I didn't know about the phytosome formulation, thanks for sharing.

These flavonoids are meant for long term use by the way.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6418071/
Thanks

Very nice reference, I like the way they compare different flavanols.  Quercetin AND Luteolin (specially) has a nice effect on me, whereas Fisetin (also cited in this research) somehow has an oppositely negative effect on me.  I get induced into temporary POIS for about 24 hrs after taking one dosage only.  Anyone else has this effect from Fisetin?

The Role of Quercetin, Flavonols and Flavones in Modulating Inflammatory Cell Function
I have never tried Fisetin. It could also be a bad reaction to the fillers.
« Last Edit: May 26, 2020, 08:05:32 AM by Muon »