Author Topic: Mast Cell Activation Syndrome  (Read 26963 times)

hurray

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Re: Mast Cell Activation Syndrome
« Reply #255 on: July 04, 2020, 06:49:39 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

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

Quote
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/
« Last Edit: July 04, 2020, 07:07:57 PM by hurray »

Vandemolen

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Re: Mast Cell Activation Syndrome
« Reply #256 on: July 06, 2020, 12:55:59 PM »

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.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

demografx

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Re: Mast Cell Activation Syndrome
« Reply #257 on: July 06, 2020, 07:01:47 PM »
Good luck, Van!
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

Vandemolen

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Re: Mast Cell Activation Syndrome
« Reply #258 on: July 07, 2020, 03:03:08 PM »
Thanks! There is delay because all the Dutch pharmacies do not have Nalcrom for at least two weeks. I do not know why.
POIS since 2000. Very bad since 2008. I knew that I have POIS since June 2010. Desensitization since March 2011. I stopped with desens in July 2016. I have 50% less POIS. And only 1 day of POIS. Purified CBD works for me, but I am allergic for CBD.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #259 on: July 22, 2020, 07:01:31 AM »
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   ↑
« Last Edit: July 31, 2020, 07:07:43 AM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #260 on: July 22, 2020, 08:42:37 AM »
This drug is for treatment of Fibromyalgia. I can't help but notice the similarities between Fibromyalgia symptoms and POIS. I wonder if we are suffering from a similar or even the same ailment.
Mast Cells, Neuroinflammation and Pain in Fibromyalgia Syndrome

"Increased levels of the pro-inflammatory chemokine IL-8 (CXCL8) have been reported in the serum and CSF in patients with FMS"

https://poiscenter.com/forums/index.php?topic=2545.msg32239#msg32239

It was quite a hot day when it was measured. Combine it with the previous post, it could drop due to orgasm only for the short term by rise in (nor)epi: Specificity of the neuroendocrine response to orgasm during sexual arousal in men.

Then there could be negative ejaculatory effects from MC activation due to interaction between urogenital MCs and potential triggers in seminal fluid doing other things.

Bluesbrother's TNF - alpha going down as well post-orgasm from 32.6 pg/ml to normal range (reference range <12.0 pg/ml).

Anti-inflammatory effect of β2-agonists: Inhibition of TNF-α release from human mast cells

Off-topic: #males vs #females in POIS regarding sex hormones and Th1/Th2 function. TESTOSTERONE AND ESTROGEN DIFFERENTLY EFFECT TH1 AND TH2 CYTOKINE RELEASE FOLLOWING TRAUMA-HAEMORRHAGE
« Last Edit: July 22, 2020, 05:53:57 PM by Muon »

Muon

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Re: Mast Cell Activation Syndrome
« Reply #261 on: July 22, 2020, 10:55:16 AM »
The difference in absorption between unformulated Quercetin and Quercetin Phytosome is huge:



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

https://www.thorne.com/products/dp/quercetin-phytosome

Muon

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Re: Mast Cell Activation Syndrome
« Reply #262 on: July 22, 2020, 07:06:00 PM »
Mallory:

"I am so glad to have found this... .trust me you are not the only woman with this problem!  I am 27 and have been experiencing the very same problem for the last few years.  During and immediately after orgasm, from intercourse or masturbation, I get  body and joint aches, neck stiffness, throbbing headache and nausea. This also happens when I perform oral sex on my husband, that does not result in an orgasm on my end.   It's the worst for several hours but the flu like symptoms will last for days. I have been gluten and dairy free for 4 years now, so it isn't allergies.  I have recently been diagnosed with fibromyalgia  and a tentative  MS dx, but still need a spinal tap.  Do you have any other illness, nerve pain, or odd symptoms..... do you get the same feeling with intense exercise?  I exercise frequently but get a similar headache only when I go running for some reason.. minus the flu symptoms though.  I have a normal body weight and BMI, and have normal blood pressure and blood work.  My doc has be taking 400 mg of riboflavin daily, which is apparently for migraines, although I never really get headaches at any other time"

Oral sex: Non-IgE mediated activation of mucosal mast cells?
Fibromyalgia: Often comorbid with MCAD
Multisystem symptoms and odd symptoms induced by triggers: Typical MCAD
Exercise: potential mast cell trigger

Many women have CFS on the TNS forum which is also often seen comorbid with MCAD.
« Last Edit: July 22, 2020, 07:25:48 PM by Muon »

drop247

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Re: Mast Cell Activation Syndrome
« Reply #263 on: July 23, 2020, 10:20:10 AM »
Muon do you take daily quercetin?

Muon

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Re: Mast Cell Activation Syndrome
« Reply #264 on: July 23, 2020, 01:10:06 PM »
Muon do you take daily quercetin?

No, I do not take it, was thinking about pumping Luteolin into my system but may put that on hold. Had some hope doctors would prescribe me some mast cell stabilizers last year to save money, like cromolyn, but to no avail. Right now I'm thinking about saving the money for a spine MRI scan instead of spending it to supplements. Not entirely sure where to go from here. 

hurray

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Re: Mast Cell Activation Syndrome
« Reply #265 on: July 23, 2020, 02:37:26 PM »

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.


That's a good theory, and could be the correct one. Although it does lead me to wonder why milnacipran worked, but the various other NRIs I have tried did not? Theoretically they should all have increased the bioavailability of norepinephrine.


Muon

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Re: Mast Cell Activation Syndrome
« Reply #266 on: July 23, 2020, 03:03:01 PM »
That's a good theory, and could be the correct one. Although it does lead me to wonder why milnacipran worked, but the various other NRIs I have tried did not? Theoretically they should all have increased the bioavailability of norepinephrine.

That's the part I don't get. It must have additional properties then, like these:
Anti-inflammatory and anti-hyperalgesic effects of milnacipran in inflamed rats: involvement of myeloperoxidase activity, cytokines and oxidative/nitrosative stress

Now some of these cytokines are elevated during brain inflammation leading to brain fog. If other SNRIs don't work then it may have nothing to do with the reuptake of serotonin or norepi. You might just be suppressing pro-inflammatory cytokines inside your brain reducing inflammation and thus reversing brain fog. Some of these cytokines are elevated in Fibro:

Fibromyalgia and cytokines

If mast cells were the culprit then the other SNRI's should affect the AB2R as well unless this med acts on different receptors. With other words the source of cytokines might be something else. Perhaps microglia.

berlin1984

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Re: Mast Cell Activation Syndrome
« Reply #267 on: July 23, 2020, 04:11:25 PM »
That's a good theory, and could be the correct one. Although it does lead me to wonder why milnacipran worked, but the various other NRIs I have tried did not? Theoretically they should all have increased the bioavailability of norepinephrine.

My take:

...
HOWEVER, since I buy into the theory that POIS is virus-caused, maybe the main reason people on the forum have success with anti depressants is because of the effect on some viruses?
(Of course, certain effects on serotonine might also help with the general POIS associated feelings)
...
(Clic the date to expand to full post)
Please vote on: https://poiscenter.com/forums/index.php?topic=3386.0
(There's real science behind it, not Astrology..)

My Protocol

hurray

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Re: Mast Cell Activation Syndrome
« Reply #268 on: July 23, 2020, 06:45:42 PM »
That's a good theory, and could be the correct one. Although it does lead me to wonder why milnacipran worked, but the various other NRIs I have tried did not? Theoretically they should all have increased the bioavailability of norepinephrine.

My take:

...
HOWEVER, since I buy into the theory that POIS is virus-caused, maybe the main reason people on the forum have success with anti depressants is because of the effect on some viruses?
(Of course, certain effects on serotonine might also help with the general POIS associated feelings)
...
(Clic the date to expand to full post)

It's an interesting possibility. It doesn't feel quite right in my case - I have taken several different kinds of anti-depressants in the last 10 years (SSRIs and SNRIs). 1 of them consistently eliminates my brain fog, all the rest of them did absolutely nothing for my brain fog :)

Most of them did have the side-effect of making me feel more comfortable about my POIS, but that doesn't help when you're trying to hold down a job that involves talking to people :)

hurray

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Re: Mast Cell Activation Syndrome
« Reply #269 on: July 23, 2020, 07:15:49 PM »
That's a good theory, and could be the correct one. Although it does lead me to wonder why milnacipran worked, but the various other NRIs I have tried did not? Theoretically they should all have increased the bioavailability of norepinephrine.

That's the part I don't get. It must have additional properties then, like these:
Anti-inflammatory and anti-hyperalgesic effects of milnacipran in inflamed rats: involvement of myeloperoxidase activity, cytokines and oxidative/nitrosative stress

Now some of these cytokines are elevated during brain inflammation leading to brain fog. If other SNRIs don't work then it may have nothing to do with the reuptake of serotonin or norepi. You might just be suppressing pro-inflammatory cytokines inside your brain reducing inflammation and thus reversing brain fog. Some of these cytokines are elevated in Fibro:

Fibromyalgia and cytokines

If mast cells were the culprit then the other SNRI's should affect the AB2R as well unless this med acts on different receptors. With other words the source of cytokines might be something else. Perhaps microglia.

You give some good reasons as to why milnacipran could be considered to fit within the MCAS theory of POIS. A combination of theory and experimentation could be what we need to beat POIS  :)