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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. nanonug

    nanonug Senior Member

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    They all work together as part of one's immune system. All three are associated with allergies, for example. I am afraid, however, that your question is too broad to have an easy answer. You may want to look at Table 1 on the following document to see if it rings any bells. In my opinion, the more symptoms you are able to match from different categories, the stronger the case would be to get tested for mast cell disorders: "Polycythemia From Mast Cell Activation Syndrome: Lessons Learned."
     
  2. madietodd

    madietodd Senior Member

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    I did a little bit of research into MCAS, and it was discouraging. Please correct me if my impression is wrong, but it looked like
    (a) diagnosis is difficult and often impossible, and
    (b) there's no clear treatment protocol.

    Did I just go to the wrong websites?

    Madie
     
  3. nanonug

    nanonug Senior Member

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    MCAS is the subject of intense research but it is both testable and treatable. Where in the East Coast are you?

    Well, what websites did you go to? :)
     
  4. madietodd

    madietodd Senior Member

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    I'm in Annapolis. I have a brain like a sieve, so I have no idea where I went. I just did a google search, read some things, and got very confused.

    I am astonishingly easy to confuse.

    I have just lucked into a fabulous osteopathic doctor who asks great questions and is interested in running tests to figure out what's going on. So I thought of you...............
     
  5. nanonug

    nanonug Senior Member

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    Annapolis, MD, I presume. You have the NIH not too far away from you so you might consider that as a last resort, if necessary.

    Awesome! Maybe s/he would be open to reading this: MCAS Primer for Physicians? Serum tryptase, 24-hour urinary N-methylhistamine and 24-hour urinary Prostaglandin D2 are the three tests I suggest. You may also want to do 24-hour urinary 5-HIAA to rule out carcinoid syndrome. Quest Diagnostics offers all of these tests.

    Thank you for your thought! I am glad to be able to (try to) help.
     
    merylg likes this.
  6. madietodd

    madietodd Senior Member

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    I'm seeing him on Friday, and I'll ask if he's heard of it. Meanwhile, I'll try to learn the basics so I can sound intelligent (!) about why I'm interested in this possibility. Then I see him again 10 days later, and might spring the primer on him then.

    NIH is too far away - my driving radius is 20 minutes.

    What has shifted for you since you began treatment?
     
  7. nanonug

    nanonug Senior Member

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    I am still doing the basic treatment stuff, which mostly consists of H1/H2 blockers. These help a bit but given that mast cells have the potential to release hundreds of different mediators, H1/H2 blockers just don't go far enough. I am still waiting for my lab results. Once I have them, and if MCAS is confirmed, I will then also start stuff such as Singulair and GastroCrom. There are also tyrosine kinase inhibitors such as Gleevec that might be attempted as well.
     
    merylg likes this.
  8. madietodd

    madietodd Senior Member

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    One of my kids took Singulair for asthma years ago. It took 2 long weeks to figure out that her flat-out panic attacks were a little-known side effect.

    I hope you'll post your treatment - what you take and why and what happens. That's the only way I can understand all this medical stuff.
     
    merylg likes this.
  9. nanonug

    nanonug Senior Member

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    Side-effects are something one must always be on the lookout for. One thing I am starting to appreciate more and more is that "starting small" and slowly escalating as necessary is always a good idea.

    I will, yes.
     
    merylg likes this.
  10. Shell

    Shell Senior Member

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    I need to come back and read all this again. My brains are leaking out of my ears right now! There's a couple of things that stand out for me; the flushing and rash thing and the lymph swelling.
    I noticed on ME symptom lists it says lymph pain without swelling. Well that's true sometimes but I often have "bolt neck" and "plague armpits" with lymph swelling (not groin thankfully).

    I'm on Singleair too. So far so good. The asthma side of things and heart related breathing problems were getting out of control. Seretide is doing the job too.
     
    merylg and nanonug like this.
  11. Shell

    Shell Senior Member

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    OK. I'm getting my head around this a little. I note that mitochondrial dysfunction is talked about as part of the MAST cell problem. It seems that for both ME and fibro mito dysfunction has been flagged up over and over. It would also play a role in dysautonmic aspects of particularly FMS which is increasingly believed to be dysautonomia.
    It seems from the Youtube lectures that the root of all of these complicated dysfunctions is the MAST cell disorder.
    Am I reading this too simplistically - or has this research finally shone a light at the cause?
    Of course then the cause of the MAST cell dysfunction is needed - but a root to the system wide disorders and co-morbidities that go with this (he mentioned asthma in there I noticed).

    My dh said he has recently come across research that shows increasing asthma problems associated with the menstrual cycle. I was interveiwed during one of my pregnancies (third I think - she's about to turn 19) about my sudden onset of serious asthma problems. I'd been admitted needing oxygen and IV steroids.
    Once she was born I went back to my normal asthma, which was practically non-existant.
    But the researcher who interveiwed me said she was studying the role of pregnancy with asthma. I was also interviewed by someone researching migraine and pregnancy as back then I was going through a bad patch migraine wise too.

    Nine years later when I'm pregant again the whole shabang kicks off.

    Anyway, I notice that prostoglandin is mentioned in lots of research as having something to do with all this.

    All very interesting and would explain why so many more women (pre-menopause) are sick.

    But then I wonder about the pituatary - which would bring all the men into the picture - and how mast cells work there.
    Do Mast Cells have anything to do with hormone balance - glands?
    Sorry if I'm completely off the wall on this. But I'm trying to tie in a lot of threads.
     
  12. nanonug

    nanonug Senior Member

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    Mast Cells have receptors for several hormones. For example:
    If you do a search on Pubmed for "mast cells hormones" you will find a ton more abstracts on the subject.
     
    Shell likes this.
  13. Junto

    Junto

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    Hi, I could be mistaken, but I believe that you can purchase cromolyn sodium at your local CVS/Right Aid.
    Junto
     
  14. Junto

    Junto

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    Howdy, I've been following this thread. Did you get your test results?

    I'm very interested in this potential mechanism theory, I've had TERRRIBLE allergies since I was 6 or so. My rhinitis has been so bad for so long(terrible sinus pressure and pain, stuffy nose, flue-like sickness, brain fog) that I developed a form of immune exaustion. I've also had shingles outbreaks 1-2 per year since the age of 8.

    Anyway, just interested to get your status update, hope your feeling 100%.

    Junto
     
  15. camas

    camas Senior Member

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    Hi Junto, Not sure what has become of nanonug. Hope he's okay.

    I think he was probably talking about prescription gastrocrom which you take orally before eating rather than nasalcrom.
     
    xchocoholic likes this.
  16. alex3619

    alex3619 Senior Member

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  17. RustyJ

    RustyJ Contaminated Cell Line 'RustyJ'

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    I've been on 4mg Ketotifen plus H2 blockers and antihistamines, basically the Mast Cell disorder protocol for about 4 weeks. I have noticed some significant changes. I have put on 10kg in that time, basically 1/6th my body weight. I was underweight. I resumed light weights and situps three weeks ago and have been able to reach my previous best (after months) within a matter of weeks and have now gone beyond - this may be due to increased muscle mass or energy.

    I don't feel less fatigued in general, but my state of mind is a little better - I feel less agitated. The grittiness in my eyes, which has plagued me for 18mths suddenly has gone. I don't think my OI is any better. However 10% improvements in fatigue and OI may be hard to pick up. I think PEM is less also.

    These are the greatest physical physical improvements I have gotten from any treatment.
     
    camas likes this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    It has been mentioned in articles i have read awhile ago that the tricyclic antidepressant doxepin is one of the strongest antihistamines. I have heard of some people greatly improving with doxepine and one women with cfs/me went into remmission with doxepine use. It is quite sedating and many have thought that it calms the system down so it can recovery and greatly helps sleep but i wonder if its antihistamine actions help modulate the immune system in some people, maybe through its actions on mast cells. I havent google doxepin and mast cells but i think i will now??
     
  19. adreno

    adreno 3% neanderthal

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    Yes, doxepin is a mast cell inhibitor. I believe all the tricyclics are.
     
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    I thought doxepin had alot stronger antihistamine properties then other tricyclics and possibly modulate the immune system in other ways??
     

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