International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
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ME/CFS is a mast cell disorder (hypothesis)

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nanonug, Jul 12, 2012.

  1. Gingergrrl

    Gingergrrl Senior Member

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    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.

    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.

    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.
     
  2. ebethc

    ebethc Senior Member

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    thanks for the suggestion
     
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  3. IThinkImTurningJapanese

    IThinkImTurningJapanese Moderator

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    That is very helpful, :thumbsup:

    Swiss Interest Group Histamine Intolerance (SIGHI)
     
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  4. jimells

    jimells Senior Member

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    Here is the document nanonug linked to at the beginning of the thread:

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

    Attached Files:

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  5. Learner1

    Learner1 Forum Support Assistant

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    Thanks - can you try uploading again? I'm getting an error message where index.pho can't be opened on these files.
     
  6. jimells

    jimells Senior Member

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    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.
     
  7. Learner1

    Learner1 Forum Support Assistant

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    That could be. Ill try from my iPad or Windows, I guess, as Android can't read them.

    Thanks for your persistence!
     
  8. ahmo

    ahmo Senior Member

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    @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.
     
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  9. redo

    redo Senior Member

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    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.
     
    Last edited: Jan 22, 2018
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  10. redo

    redo Senior Member

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    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.
     
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  11. wastwater

    wastwater Senior Member

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    I’ve just come across mcas in my rare group something I will look into
    I did used to suffer with allergies a lot
     
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  12. justy

    justy Donate Advocate Demonstrate

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    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.
     
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  13. redo

    redo Senior Member

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    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.
     
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  14. justy

    justy Donate Advocate Demonstrate

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    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?
     
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  15. Helen

    Helen Senior Member

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    @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.
     
    Last edited: Jan 31, 2018
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  16. redo

    redo Senior Member

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    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.

    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.

    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
     
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  17. rel8ted

    rel8ted

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    I have developed them in the ast 10 years, but ill since 1993.
     
  18. justy

    justy Donate Advocate Demonstrate

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    This is what i have been told, yes.

    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.

    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.
     
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  19. justy

    justy Donate Advocate Demonstrate

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    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!
     
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  20. ebethc

    ebethc Senior Member

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    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
     

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