Author Topic: Mast Cell Activation Syndrome  (Read 26962 times)

Vandemolen

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Re: Mast Cell Activation Syndrome
« Reply #105 on: February 16, 2020, 10:09:12 PM »
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.
In The Netherlands you need a prescription for Cromolyn. Nalcrom is the oral version for food allergies. And Lomudal for inhalation or spray. Nalcrom was one the medicines I had on a list to suggest to my POIS doctor. Back then I got another medicine to try but that did not work. There is also a POIS paper of a researcher who used it with succes at a POIS patient.
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.

Mushnikk

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Re: Mast Cell Activation Syndrome
« Reply #106 on: February 17, 2020, 02:11:57 AM »

1) You can measure MC mediators (there are more than 200) in poisers and compare it to healthy controls.

2) Get a group of poisers to go through a list of potential stabilizers one by one and draw concusions from that.

3) One paper mentioned that electron microscopy can be used to monitor mast cell activity in biopsies.

If you look at the entire forum closely you will start to see MCAD all over the place, at least, that's my experience. The different cases are probably due to different mediator profiles and location of activity.

Those would all be interesting ways to gather new evidence. However, I was thinking more in terms of evidence that we currently have.

There is a treasure trove of information on this forum and the NSF forum. If we had some case studies of people who had been successfully helped by mast cell stabilizers, those case studies would strongly support the MCAS/POIS hypothesis, particularly in the eyes of medical professionals.

I also benefit from mast cell stabilizer (CBD oil, curcumin), I will cromolyn and quercetin soon.

Muon

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Re: Mast Cell Activation Syndrome
« Reply #107 on: February 17, 2020, 09:11:11 AM »
Another research option:

"Single cell laser microcapture and qRT-PCR should be used to identify mast cell phenotype variability and mediator synthesis/release in situ." Ref

drop247

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Re: Mast Cell Activation Syndrome
« Reply #108 on: February 17, 2020, 11:03:50 AM »
In The Netherlands you need a prescription for Cromolyn. Nalcrom is the oral version for food allergies. And Lomudal for inhalation or spray. Nalcrom was one the medicines I had on a list to suggest to my POIS doctor. Back then I got another medicine to try but that did not work. There is also a POIS paper of a researcher who used it with succes at a POIS patient.

Can you please link the paper? If I show my doctor I think I can get a prescription.

Vandemolen

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Re: Mast Cell Activation Syndrome
« Reply #109 on: February 17, 2020, 07:11:39 PM »
I am sorry Drop. It is not a paper, but a topic from a member who has got results. I was confused by another paper, I think about TRT.

https://poiscenter.com/forums/index.php?board=7.0
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.

Quantum

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Re: Mast Cell Activation Syndrome
« Reply #110 on: February 17, 2020, 08:21:59 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?

Yes, very interesting.   If we had the quantity of these flavonoids per gram of fenugreek, we could see if we get a significant amount from from a normal dose of fenugreek.

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

Nas

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Re: Mast Cell Activation Syndrome
« Reply #111 on: February 18, 2020, 02:52:35 PM »
Only eye drops are available in Turkey unfortunately, I wonder is the eye drop solution able to circulate in the blood? or does it only affect the eye? 

Nas

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Re: Mast Cell Activation Syndrome
« Reply #112 on: February 18, 2020, 03:00:36 PM »
Also another question is: If mast cell activation does not include degranulation then how do mast cell stabilizers help?

Mushnikk

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Re: Mast Cell Activation Syndrome
« Reply #113 on: February 18, 2020, 03:01:38 PM »
Only eye drops are available in Turkey unfortunately, I wonder is the eye drop solution able to circulate in the blood? or does it only affect the eye?

This apparently varies widely by country. Here in Germany I can get cromolyn in oral form over the counter without an prescription. Perhaps you have a relative or friend who travels that get buy for you at some point?

Edit: oral form
« Last Edit: February 18, 2020, 04:03:19 PM by Mushnikk »

Nas

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Re: Mast Cell Activation Syndrome
« Reply #114 on: February 18, 2020, 03:06:12 PM »
Only eye drops are available in Turkey unfortunately, I wonder is the eye drop solution able to circulate in the blood? or does it only affect the eye?

This apparently varies widely by country. Here in Germany I can get cromolyn over the counter without an prescription. Perhaps you have a relative or friend who travels that get buy for you at some point?
You can get it in what form? is the oral form also over the counter?

hurray

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Re: Mast Cell Activation Syndrome
« Reply #115 on: February 18, 2020, 03:14:15 PM »

Yes, very interesting.   If we had the quantity of these flavonoids per gram of fenugreek, we could see if we get a significant amount from from a normal dose of fenugreek.

I could only find a percentage figure for quercetin:

Quote
Dried fenugreek seed samples were found to contain diosgenin in the range of 0.113–0.135% (w/w) and quercetin in the range of 0.009–0.012% (w/w).
https://www.hindawi.com/journals/isrn/2014/583047/

If my calculations are correct,  0.001% of 1 gram is 0.0001 grams, or 0.1mg. Not a lot!

It just goes to show, it's very easy to draw conclusions based on incomplete evidence. Over the years, I have come up with various "scientific" explanations as to why fenugreek works for me. And I am no nearer to understanding why 10 years later! I'm just glad that it does.



drop247

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Re: Mast Cell Activation Syndrome
« Reply #116 on: February 18, 2020, 03:23:26 PM »
Fenugreek is a 5-alpha reductase inhibitor. It could be doing something to your hormones that benefits you. Personally I'm afraid of it due to a bad experience with finasteride.

drop247

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Re: Mast Cell Activation Syndrome
« Reply #117 on: February 18, 2020, 03:27:13 PM »
I am sorry Drop. It is not a paper, but a topic from a member who has got results. I was confused by another paper, I think about TRT.

https://poiscenter.com/forums/index.php?board=7.0

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.

hurray

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Re: Mast Cell Activation Syndrome
« Reply #118 on: February 18, 2020, 03:33:41 PM »
Fenugreek is a 5-alpha reductase inhibitor. It could be doing something to your hormones that benefits you. Personally I'm afraid of it due to a bad experience with finasteride.

Excellent information, thank you drop247  :)

Coincidentally, I took finasteride for a few months (not for POIS). Unfortunately, it had no effect on my POIS symptoms  :( I did feel run down for months even after stopping, and I wouldn't recommend that anybody tries finasteride.

I've taken fenugreek for more than 10 years, and fortunately I still have a full head of hair and an active sex drive  ;D

hurray

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Re: Mast Cell Activation Syndrome
« Reply #119 on: February 18, 2020, 03:41:37 PM »
I am sorry Drop. It is not a paper, but a topic from a member who has got results. I was confused by another paper, I think about TRT.

https://poiscenter.com/forums/index.php?board=7.0

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.

Good news drop247, a lot of us have struggled to find a doctor who even believes that POIS is a real thing! I wish I was joking.

I will be interested to hear your reports  :)