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Allergy / Mast cell treatments

Discussion in 'Mast Cell Disorders/Mastocytosis' started by xchocoholic, Aug 25, 2012.

  1. camas

    camas Senior Member

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    Hi SaraM,

    Good to hear that Zyrtec is helping you!

    My stomach blows up like a balloon when I react to something, and it doesn't have to be to something I've ingested. Cigarette smoke is just about the worst for me.

    I also have the coated tongue and nystatin has helped in the past. I don't feel well on other antifungals which, probably not coincidentally, are listed as mast cell degranulators. I see that a number of masto patients mention candidiasis and taking probiotics, but I've yet to find documentation for this connection.

    If my TMEP diagnosis is correct, which I believe it is, my skin is a bit of an anomaly (like 1 in 3 million). So don't go by that. :)
  2. camas

    camas Senior Member

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    I forgot to add that I seem to be responding well to Thorne Research Quercetone which is the water soluble quercetin studied by Dr. Theoharides that proved more effective than cromolyn. Here's the link to that study.

    I've taken quercetin in the past with no apparent benefit, probably because it wasn't being absorbed.

    Quercetone seems to have improved my mood, my energy, and constant feeling of being overheated. It's the first time in years my skin hasn't felt hot to the touch.

    In the study they used 2 grams daily. I'm only taking 1 gram or less because more makes me feel too energized to sleep. I'll let you all know if I see continued benefits from it, since I've only been on it for a short time.
  3. SaraM

    SaraM Senior Member

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    Hi Camas,
    I tried nystatin once or twice, but stopped it due to its bad taste. I have to give it a go again though . Zyrtec is also very good , but it makes me drowsy. Allegra is my next choice.Quercetin did nothing for me either, but I have to check the one by thorn research, and maybe neuroprotek. Thanks for the tip.

    Nanonug,
    Thanks much for the info.
    camas likes this.
  4. camas

    camas Senior Member

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    Yeah, nystatin is nasty tasting, no doubt.

    I found Zyrtec very sedating, too. I started with 1/2 of a child's dose and, many months later, am finally up to 15mg. I'm sticking with this dose for the time being since I've adjusted to it.
  5. xchocoholic

    xchocoholic Senior Member

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    Hi sara,

    Good to that you're a responder too. : )

    I used candidase, virastop, candida diet and a variety of candida killers like raw garlic cream of tartar,
    Pau d arco, olive leaf, etc. I was told that usng a variety works best.

    I'm just wondering if there is a candida connection for some people with a mc disorder. I had candida
    that showed up in my stool tests for years but it was gone on my last test. I didn't have any obvious
    symptoms years before my test came back normal so I'm not sure how to tell. I still have mast cell
    problems despite a good stool test.

    My stomach bloats from cooked fats or too much flax seed. Things like Sunbutter, pb, etc. I'm ok with sweets. Creon helps mine tho.

    I'm guessing that candida aka yeast trigger mast cells to release histamine via fermentation. I'm not sure
    how significant it is tho. Our digestive tracts are complicated and strive for self regulation. Which is why I'm hesitant
    to take h2's when my labs say all I need are digestive enzymes. I haven't seen any of the masto
    docs discussing stool tests.

    tc .. X
  6. xchocoholic

    xchocoholic Senior Member

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    Congrats camas. Great news. Hope it continues. I'm guessing the over heated feeling is from
    mast cells then. : )

    It would be great if this treatment could be used for hot flashes during menopause.

    Tc .. X
    camas likes this.
  7. camas

    camas Senior Member

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    Thanks, X.

    I've read other masto patients complaining about feeling chronically overheated, so I assume that's what's going on. Could be partly menopause related too, although I've never had the classic flashes. I'm just always hot! When my boyfriend first met me, he kept taking my temperature because he was sure I was running a fever. lol
  8. SaraM

    SaraM Senior Member

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    Hi X,
    I tried most of the candida stuff you mentioned and saw no improvement, but this is nothing compared with the daily pain I had. My stool test was normal too, only high level of streptococus . I am going to try the candida stuff again anyway.

    take care
  9. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

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    Quercitin and Nettles has been great for me. No meds. With Dysautonomia, you get REALLY HOT sometimes. It is so much better now.
    merylg likes this.
  10. nanonug

    nanonug Senior Member

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    I also had to stop Zyrtec due to the drowsiness. I use Allegra now.
  11. Adster

    Adster Senior Member

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    I've been taking a 1/4 zyrtec tab at bedtime for the last 3 weeks or so. I think it has improved my gut function and mood somewhat, and possibly also energy levels are slightly improved. It helps with sleep also. Side effects are dehydration, slight "detachment" feeling and dry eyes at times.
    camas likes this.
  12. nanonug

    nanonug Senior Member

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    You may want to also add an H2 blocker as I explained in a previous post.
  13. xchocoholic

    xchocoholic Senior Member

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    A small dose of antihistamines doesn't work for me or from what I've seen other's with mast cell
    problems. That's probably why years ago when the allergist recommended I take the normal dose
    I never noticed a difference. Well that an my diet was the "healthy" standard am diet garbage. Gag !

    I seem to need 25 - 30mg wal-zyr during the day. I take 10 to start then add 5 as needed or at least
    every few hours.

    I'm also taking 90 - 180 mg allegra at nite. I'm playing with the dose to determine if it makes a difference. Allegra makes me sleepy so I want to avoid that.

    I still seem to need benadryl for throat, mouth and tongue swelling but I'm playing with what works best for swelling too.
    Taking 10 mg of Wal-zyr seemed to help the other day.

    Fwiw, I forgot my Wal-zyr this am, went for a long walk with multiple breaks and didn't feel weak at all. : )
    My brain checked out from low blood sugar tho. Eating is solving this but it's not always convenient.

    Tc .. X
  14. xchocoholic

    xchocoholic Senior Member

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    I've been chronically cold for the last 23 years, but I have hashi's. I was warmer during my hot flashes during
    peri menopause but otherwise I was cold. I hate it when it's cold out because I can't seem to keep my
    body temp up. I need hand warmers (hot hands, etc), electric blankets, etc. Cold showers or ocean
    temps actually hurt.

    Sara,

    Did you try all these at the same time ? Enzymedica gives instructions somewhere on
    how to use both virastop and candidase at the same time throughout the day to really kill these off.
    But you need strong yeast killers too. I used charcoal for the dye off symtoms.

    What's your diet like now ? Candida loves carbs. I've seen some say that they love oxalates too but
    I can't back that up myself. It may be on the yahoo tryinglowoxalate board tho.

    Tc .. X
  15. xchocoholic

    xchocoholic Senior Member

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    Hi nano,

    I keep seeing h2's recommended but since they also stop acid production, I can't bring
    myself to take these. I'm feeling so much better on just the h1's too.

    I could be missing it but I'm not seeing these specialist recommend diets other than the low histamine diet either.
    And the lh diet allows wheat and dairy. Really ? Most of the integrative docs or llmds
    I read about now are recommending a paleo diet because they understand that gluten and dairy cause
    inflamation.

    I'd feel better if the specialists recommending these were familiar with stool tests and the paleo diet. I'm waiting
    for integrative / functional doctors to take a look at this before taking h2's.

    Tc .. X
  16. nanonug

    nanonug Senior Member

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    I appreciate what you are saying. How about taking them after a meal? This way your stomach would still produce (hopefully) enough acid for digestion.
  17. xchocoholic

    xchocoholic Senior Member

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    Thanks nano but I'm not sure that's a good idea for me. I have gastroparesis so my food stays in my stomach longer
    than it should.

    I'm not sure these specialists are right about needing these either. If they're still recommending gluten and
    dairy, no wonder their patients need h2's.

    Tc .. X
  18. nanonug

    nanonug Senior Member

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    I don't recall if you have provided this info before but have you been tested for H. pylori infection?

    The H1/H2 blocker combo is simply to prevent mast cell activation due histamine. This nasty (in excess!) substance is not only released by mast cells but it also activates them to release further mediators!
  19. xchocoholic

    xchocoholic Senior Member

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    I caught and was treated for h pylori 9/2011 - 1/2012. My stool tests say we killed it off.
    And my previous tests prove I didn't have it before this. My symptoms were typical h pylori
    (inc pain in gut particularily in the middle of the night) but with an huge increase in my oi/pots.

    I was dx with gastroparesis about 10 years ago. The paleo diet has helped this but I can still
    feel my stomach muscle relax and allow food to pass when I lay down. It gurgles like crazy.

    I'm assuming it's part of the nerve damage I got from eating gluten. My hypothesis is that
    if gluten can damage purkinje cells in the brain, then it can happen to purkinje cells anywhere.
    I have a left bundle branch block (ticker problem) and recovered from gluten ataxia. This may have been proven in the last 5 years and I missed it too.

    I've read that the h2's are necessary to stop the mast cells from releasing histamines in the gut
    but if these specialists aren't aware of all the problems from foods like gluten and dairy,
    I find it hard to trust their judgement on the necessity of h2's. Who doesn't need h2's, antacids, etc etc when
    eating those foods ?

    That's just my opinion tho. I passed the diy acid test and I don't get gerd unless I over eat so I think I'm good .. I reserve the right to change my mind.. Lol.

    Tc .. X
  20. camas

    camas Senior Member

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    Fell off the wagon last night by getting into the Halloween candy and eating a full sized chocolate bar. Got an immediate pressure headache probably as much from all the soy as the chocolate. Popped two Quercetone and, lo and behold, my headache was gone in half an hour, and I have no ill effects today. I will try to behave myself for the next couple of days and hope that we get lots of trick-or-treaters so that there will be no candy left in the house. It's just nice to know that the Quercetone might be used in instances where I didn't intentionally poison myself. lol

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