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ME/CFS is a mast cell disorder (hypothesis)

Gingergrrl

Senior Member
Messages
16,171
alison vickery

I personally do not think the alison vickery website has accurate info re: MCAS and some of her diet recommendations are things that are not low histamine and would have probably killed me if I'd eaten them back in 2015.

The best food/diet website I have ever found for MCAS is the "SIGHI" diet from Switzerland which has everything translated into English (and other languages). I no longer have any food restrictions but I followed the SIGHI diet religiously for about 1.5 yrs.

gingergrrl is one of the best sources of info on extreme mast cell problems... She sees Dr Kaufman (who's next on my list..), but there are other docs, too.

I actually also have an MCAS specialist and am happy to give his name by PM although he remains closed to new patients at present.

Not sure how much the above would help for serious MCAS (ie, emergency room visits w epinephrine shots, etc.)..

Luckily I only went to the ER once (when I was admitted to the hospital for a week by Dr. K) b/c I had reached the point of becoming allergic to all food but water back in 2015. I have an EpiPen but have never had to use it b/c back at that time, my rescue med, Atarax, worked so well for me. Without the Atarax, there were a few episodes that I think would have progressed to needing Epi.
 

jimells

Senior Member
Messages
2,009
Location
northern Maine
Here is the document nanonug linked to at the beginning of the thread:

Systemic Mast Cell Disease: An Update - L. Afrin, M.D.
 

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  • 2011_MSC_Medical_Lecture_Mast_Cells_Part3.pdf
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jimells

Senior Member
Messages
2,009
Location
northern Maine
Thanks - can you try uploading again? I'm getting an error message where index.pho can't be opened on these files.

All three files opened for me. Maybe they only work on Linux? The original file was 26 MB, so I had to split it up, then try to upload again, and again, and again, because although the upload limit is supposed to be 10 MB, the upload dies even when Linux reports the file size as 9.3 MB. Grrrrr.
 

ahmo

Senior Member
Messages
4,805
Location
Northcoast NSW, Australia
@redo I'm fortunate that my mast cell issues are relatively mild. I'm careful to eat non-histaminic. I take royal jelly daily for MC, and for flares take more, plus mangosteen. Rutin generally is enough for me if I have a histamine event. Also footbaths w/ Vit C + Ca, but I haven't needed that for several years. If you look for rutin, make sure it's a non-citrus form. good luck.
 

redo

Senior Member
Messages
874
Its not an alternative diagnosis, but there are not a lot of well qualified MCAS Drs out there. Perhaps if you say what country you are in, either @Gingergrrl or i could give you some names? I see a good Dr in the UK for MCAS, other are available. If i was in the US and could travel i would definitely feel it worthwhile to get an appointment with Dr Afrin.

His book, Never Bet Against Occam is also highly recommended to read.

Never bet against Occam. Great title.

Thank you for your helpful post, Justy. My health is such that I don't check the boards as often as I wish. I've just sent an email to my national MCAS foundation, to find out which doctors are available. Though I will most likely bring up the subject with my immunologist first. If not the the subject of MCAS, then at least which role antihistamines might play.

I've skin-read the Wikipedia article on MCAS treatment and see that famotidin is mentioned. I've been trying famotidin and it's helped my sleep. Even though it's a drug against heartburn and things like that. I am not sure whether the effect I've had of famotidin is an indication that I have MCAS.
 
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redo

Senior Member
Messages
874
I've always tested negative to allergies - which is crazy b/c I feel "allergic" all the time...Learning about MCAS and getting tested (positive) was a breakthrough...

However, I can't tolerate rx anti-histamines or mast cell inhibitors so I don't any much relief plus they make me wayyyy too tired (zyrtec and xyzal are okay, but not great..).. I'd like to go to Dr Kaufman (in Mountain View, CA) and discuss IVIG, (among other treatments), but until then this is my current inflammation / allergy stack:
  • Believe it or not, non-corn Vitamin C has been amazing ($16, #120 Ecological Formulas brand, which is derived from tapioca).. I take 3 grams at a time, as needed... supposedly it breaks down histamine
  • high dose DHA ($13, #60, Mega DHA by Nature's way is molecularly distilled, high dose and cheap)
  • Wobenzym ..($110, #800, but you can buy a bottle of #100 for $25 or just return to AMZN if it doesn't work) I can't believe it's not talked about more on this board... it's great at reducing cytokines, which is a core problem in CFS... I take ~15 pills per day... read the reviews on AMZN
  • Quercetin ~$20 .. the best mast cell inhibitor i've ever taken.. not perfect, but no side effects for me personally and very effective

PROBIOTICS FOR REDUCING HISTAMINE
  • B LONGUM / B INFANTIS
  • L PLANTARUM
  • L RHAMNOSUS

IMO, the most important thing that you do is address any gut issues... As far as I can see, the basic rationale for the paleo diet (stone-age diet), the specific carbohydrate diet (SCD), the GAPS diet and the FODMAP diet is essentially the same: these diets are all designed to stop partially digested carbohydrates reaching the colon, where they can feed bad bacteria. Lots of info on this site re gut issues, so I won't go into any specifics here..

Other sites w MCAS info for newbies:
  • the low histamine chef
  • selfhacked
  • alison vickery

gingergrrl is one of the best sources of info on extreme mast cell problems... She sees Dr Kaufman (who's next on my list..), but there are other docs, too. I'm listing the other info so you don't have to wait to see a doctor to experiment, especially if your MCAS is moderate.. Not sure how much the above would help for serious MCAS (ie, emergency room visits w epinephrine shots, etc.)..

Good luck

Thanks! Hmm. Have you tried Xolair before? I see there are patients on the internet who've posted that it's given them their lives back. In vitro it brings down the histamine release with 90 %. I am seriously thinking about trying it.
 

wastwater

Senior Member
Messages
1,271
Location
uk
I’ve just come across mcas in my rare group something I will look into
I did used to suffer with allergies a lot
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Never bet against Occam. Great title.

Thank you for your helpful post, Justy. My health is such that I don't check the boards as often as I wish. I've just sent an email to my national MCAS foundation, to find out which doctors are available. Though I will most likely bring up the subject with my immunologist first. If not the the subject of MCAS, then at least which role antihistamines might play.

I've skin-read the Wikipedia article on MCAS treatment and see that famotidin is mentioned. I've been trying famotidin and it's helped my sleep. Even though it's a drug against heartburn and things like that. I am not sure whether the effect I've had of famotidin is an indication that I have MCAS.
Good luck with finding a Dr. Let us know how you get on.

I havent updated my postings on MCAS in a while, but mine has, as Afrin suggests in his book, stepped up over time so that now i am having minor reactions a few times a week, own to a very limited diet and unable to tolerate all but my MCAS meds. Two severe reactions in the past year has lowered my functionality.
 

redo

Senior Member
Messages
874
Good luck with finding a Dr. Let us know how you get on.

I havent updated my postings on MCAS in a while, but mine has, as Afrin suggests in his book, stepped up over time so that now i am having minor reactions a few times a week, own to a very limited diet and unable to tolerate all but my MCAS meds. Two severe reactions in the past year has lowered my functionality.

Sorry to hear that. Could you let me know some of the background regarding the two severe reactions? This is probably unrelated, but I had a severe setback when trying ARVs (not regular side effects), I've also had a severe setback on roaccutane. Maybe it was my body reacting allergically to those drugs, who knows.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Sorry to hear that. Could you let me know some of the background regarding the two severe reactions? This is probably unrelated, but I had a severe setback when trying ARVs (not regular side effects), I've also had a severe setback on roaccutane. Maybe it was my body reacting allergically to those drugs, who knows.
The first severe reaction was when receiving IV antibiotics for suspected Lyme and co. I had a seizure/dystonic type storm immediately the drip started. I felt severe impending doom, flushed and then started jerking in my arms and legs, my mouth drooped downwards and i couldnt speak properly. This lasted nearly two hours. Nobody did anything.

After that it took me 5 days to be able to tolerate going in the car (10 hour drive home) and i couldn't stand up for months without being dizzy. I had a severe M.E relapse for about 6 months.

Then in July we attempted to drive to S of France, it may have been the vibrations of the road apparently this can set off mast cells), but i had a reaction to food on the way in a picnic area - i suddenly felt my heart racing, felt very dizzy/out of it and felt like something terrible was going to happen. i took extra antihistamines and drank 1 g of vitamin C immediately. I was then bedbound for the whole two weeks we were in France, and got better towards the end of the trip. I only ate 4 foods while there and am now up to 10.

I also had in the past adverse reactions to;
Prednisolone - suicidal ideation at only 5mg, borderline psychosis at this dose, inability to eat, severe fatigue.
Rifampin - suicidal ideation and psychosis
Valium - need tiny amounts for a big effect
Fexofenadine - depression and suicidal ideation

I had three months where i couldn't breathe properly and couldn't get out of bed once This was cured with Ketotifen, as were lifelong 'asthma' issues.

The food reaction in July of last year has taken me 5 months to get almost back to baseline from. And that is a whole year after the IV drug reaction until i feel my M.E is back to normal. I hope this makes sense?
 

Helen

Senior Member
Messages
2,243
@justy , did you have any gene test including the ones in the P450 systeme (sometimes called detox genes)? A 23andme test covers many of them? Maybe you already are aware of the following...

Here you can check the drugs you have reacted to, maybe caused by accumulation of the active substance. If you find them in the table it should be worth studing this more in depth to see if gene defects are causing you the severe problems. Sometimes an enzyme defect also causes too high levels of the enzyme, and then increases the metabolism.

As an example I got to know that I had the severe CYP3A4 enzyme defect. That enzyme metabolizes 50-60 % of all drugs and if you don´t have enough of the enzyme, the metabolism of e.g. cortisone is . I ended up at ER with an adrenal insufficiency as my adrenals had shut down there own cortisol production to almost zero. A much lower dose should have worked, but not the standard doses.

Edit: sorry, maybe OT but I think this is often forgotten when we talk about adverse reactions to drugs.
 
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redo

Senior Member
Messages
874
The first severe reaction was when receiving IV antibiotics for suspected Lyme and co. I had a seizure/dystonic type storm immediately the drip started. I felt severe impending doom, flushed and then started jerking in my arms and legs, my mouth drooped downwards and i couldnt speak properly. This lasted nearly two hours. Nobody did anything.

After that it took me 5 days to be able to tolerate going in the car (10 hour drive home) and i couldn't stand up for months without being dizzy. I had a severe M.E relapse for about 6 months.

Can you remember which antibiotics this were? I got worse following two types of antibiotics used against lyme. But it wasn't an immediate thing. But it lasted for a decade or so.

Then in July we attempted to drive to S of France, it may have been the vibrations of the road apparently this can set off mast cells), but i had a reaction to food on the way in a picnic area - i suddenly felt my heart racing, felt very dizzy/out of it and felt like something terrible was going to happen.

I get worse from car travelling as well, though I haven't made sense of it. It's only since January this year I've been reading about mast cells, and I see that histamine is released when we experience motion sickness. Perhaps overactive mast cells release way too much histamine from just a little motion.

I had three months where i couldn't breathe properly

How was this with you? I had many months were I could not fill my lungs properly. They filled about 3/4 up, and this was accompanied with an eerie uncertainty feeling I've never ever had before. All of this came immediately after using a methylation protocol recommended on these boards. I don't know why I reacted as I did, and thankfully that's reversed now. But I do see that methylation and mast cell responses are linked.
http://science.sciencemag.org/content/355/6327/809.1
 

rel8ted

Senior Member
Messages
451
Location
Usa
From what I've heard, urticaria pigmentosa is one of the main markers. This means light brown lesions on the skin. How many people with ME have them? I do now, but I didn't get them for something like the first ten years of having ME.
I have developed them in the ast 10 years, but ill since 1993.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Perhaps overactive mast cells release way too much histamine from just a little motion.

This is what i have been told, yes.

Can you remember which antibiotics this were?

Ceftriaxone. But it was Doxycycline two years before that that kicked off my mast cells big time with intense itching 24 hrs a day that went on for months and months. I still get breakthrough itching now, but lots of antihistamines just about controls it.

How was this with you? I had many months were I could not fill my lungs properly. They filled about 3/4 up, and this was accompanied with an eerie uncertainty feeling

Yes, i had the sensation that there wasn't enough air going in, that i couldn't take big enough breaths - this preceded the Doxycycline incident and we didn't realise this was a mast cell issue until i got onto a decent dose of ketotifen, breathing problems cleared up completely and now just get issues with colds or viruses as the extra inflammation is no good for my lungs.

At the time i had the breathing issues my peak flow was low ish - around 240, but oxygen sats normal, no wheeze and spriometry all normal.
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
@justy , did you have any gene test including the ones in the P450 systeme (sometimes called detox genes)? A 23andme test covers many of them? Maybe you already are aware of the following...

Here you can check the drugs you have reacted to, maybe caused by accumulation of the active substance. If you find them in the table it should be worth studing this more in depth to see if gene defects are causing you the severe problems. Sometimes an enzyme defect also causes too high levels of the enzyme, and then increases the metabolism.

As an example I got to know that I had the severe CYP3A4 enzyme defect. That enzyme metabolizes 50-60 % of all drugs and if you don´t have enough of the enzyme, the metabolism of e.g. cortisone is . I ended up at ER with an adrenal insufficiency as my adrenals had shut down there own cortisol production to almost zero. A much lower dose should have worked, but not the standard doses.

Edit: sorry, maybe OT but I think this is often forgotten when we talk about adverse reactions to drugs.
I havent done gene testing, no. Interesting idea though.

My mast cell Dr thinks i may have a leaky blood brain barrier as i react very strongly to any sedating drugs - i take a 1/4 of a 2mg valium tablet for travelling and it works, also ketotifen knocked me out at a 1/4 of one tab. Steroids arre a big problem for me as i get borderline steroid psychosis at only 5 mg of prednisolone - crazy!
 

ebethc

Senior Member
Messages
1,901
My mast cell Dr thinks i may have a leaky blood brain barrier as i react very strongly to any sedating drugs - i take a 1/4 of a 2mg valium tablet for travelling and it works, also ketotifen knocked me out at a 1/4 of one tab. Steroids arre a big problem for me as i get borderline steroid psychosis at only 5 mg of prednisolone - crazy!

Interesting... I respond strongly to any sedating drugs... how do you strengthen the blood brain barrier? I have mast cell issues - high tryptase, etc - and can't tolerate ketotifen at all... I have to rely on quercetin and vitamin c. I can't tolerate prednisone, but a lot of ppl can't so I don't know if that means anything