The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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Does this sound like MCAD?

Discussion in 'Mast Cell Disorders/Mastocytosis' started by leanguy, Mar 26, 2014.

  1. leanguy


    I am male, 39 and have been trying to get some kind of diagnosis for the past 10 years for unexplained symptoms. I obviously have some kind of histamine disorder. Does this sound like MCAD? I have no rashes or unusual pigmentation. NasalCrom helps with sinus symptoms so I am planning a trial run of ketotifen.

    - Insomnia (severe)
    - Fatigue
    - Burning mouth, gums, eyes and sinuses
    - Sinus congestion and irritation (worse in the early AM, especially during weather changes)
    - Acid reflux (taking famotidine)
    - Random nausea
    - Trouble swallowing
    - Frequent headache
    - Sensitive to meds and supplements (B vitamins provoke anxiety)
    - Poor exercise tolerance (had to give up weight lifting; makes me wired and tired)

    12/09 Histamine, Plasma 1.95 ng/mL <1.00 ALERT
    06/12 Tryptase 7.0 ug/L 2.2-13.2 NORMAL
    07/13 Histamine, Whole Blood 151 ng/mL 12-127 HIGH
    Celiac & IGE food allergies: NORMAL
    IGG food allergies: dairy,wheat,egg (not sure if meaningful)
    Lyme: one western blot came back IGM positive (false positive?)

    Thanks for any replies or advice.
  2. camas

    camas Senior Member

    It could be MCAS based on your symptoms (I have all of those, too) and blood tests. I'm attaching Dr. Afrin's paper Presentation, Diagnosis, and Management of Mast Cell Activation Syndrome for you. It's kind of long, but there are tables at the end that summarize everything.

    It's usually a matter of trial and error trying to find the right combination of meds that help. Dr. Afrin recommends first trying a cocktail of an H1 blocker, an H2 blocker, a benzo (they act as mast cell stabilizers) and aspirin if tolerated because mast cells also release prostaglandins. That's what I'm doing now (zytrec, pepcid, klonopin, but no aspirin because it makes me flush). I find that low doses of zytrec throughout the day work better than just one big dose. I couldn't tolerate ketotifen, but a lot of folks swear by it.

    I think what has helped me the most, though, is avoiding high histamine foods. I'm following the diet in my signature. And of course it's important to avoid anything you know is a trigger for you - perfume, cigarette smoke, pollen, mold, etc. Heat, cold, exercise, and vibration are other examples of triggers for some people.

    For insomnia some folks use one of the older sedating antihistamines like Doxepin or Atarax. Most try to reserve Benadryl for use in any bad reactions - throat swelling, asthma, anaphylaxis.

    I've had some luck using Seriphos at bedtime to help stop the middle of the night wakings. It helps calm the adrenal glands. I had a doctor tell me once that the 3:00 wakings occur because that's the time the liver starts doing its heavy housecleaning and kicks up all kinds of stuff that wake up your brain. I now wonder if the stuff it kicks up are things that trigger the mast cells which then release histamine, in turn, kicking in the adrenal glands and cortisol waking you up. (Just my theory.)

    There are also other supplements like Histame and Antronex that can help your body process the excess histamine. I didn't have much luck with either of those, but everyone is different and you might find them helpful.

    Okay, enough of my rambling. Hope this is of some help.

    Attached Files:

  3. leanguy


    camas, thanks much for the detailed response. I will read through your links!
    camas likes this.

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