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Allergy / Mast cell treatments

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

  1. natasa778

    natasa778 Senior Member

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    btw there was a small trial study on famotidine (h2 blocker) for kids with autism. They saw positive effects in reducing many ASD symptoms, but sadly the study was never followed up with a larger better controlled one...
    xchocoholic and taniaaust1 like this.
  2. xks201

    xks201 Senior Member

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    This really is the crux of the problem and without advanced genetic testing and serum testing of neurotransmitters, histamine, etc, we will not know if it is a genetic mutation causing malfunction of a specific system or what. Personally antihistamines knock me out at extremely small doses. I am almost unable to function the next day after taking even a fourth of a normal dose.
  3. alex3619

    alex3619 Senior Member

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    Hi, given that gamma delta T cells inhibit mast cells in the gut, and promote food allergy tolerance, two simple dietary factors that promote gamma delta T cells are worth doing - eat lots of fruit and vegetables. To counter the extra calories, cut back on grains and sugars (if you are eating them) and any fats that are not essential fats. The stone age diet is an example of this. Bye, Alex
    xchocoholic likes this.
  4. xks201

    xks201 Senior Member

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    good thinking. more sugars means more gut fermentation which is not what anyone needs.
  5. xchocoholic

    xchocoholic Senior Member

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    Thanks for adding to this thread. I'm no longer under the influence of the Vistaril coma but
    I'm not all here yet either. I live in central Fl and Isaac is stressing me out. I hardly slept last night.
    Granted I'd just woke up from my coma around 5 pm last night ... Lol .. I don't plan on taking Vistaril
    again anytime soon. Fwiw, I'd caution anyone who's sensitive to meds to avoid this one unless you want
    to sleep for a few days.

    I took 5 mg zyrtec yesterday and 5 mg this am
    and it didn't knock me out. I chose zyrtec because I read it was the most helpful with swelling.
    I bought zantac too and will start it as soon as I'm comfortable with the zyrtec. The pharmacist also said
    because of my swelling I need both h1 and 2. That's all I remember tho.

    I was trying to understand how steroids work in relation to allergies but couldn't grasp it. Does anyone
    know if we should be using these too ? I "think" I want to stay away from the nasal sprays since my
    nose diesn't run anymore. However my sinuses are blocked.

    Tc .. X
  6. xchocoholic

    xchocoholic Senior Member

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    Hi xks,

    Perhaps eliminating what foods or chemicals you know you're intolerant too would help too.
    Maybe histamine levels or inflamation levels need to be minimized first in some cases.

    I take 1/4 - 1/2 tsp of Target brand children's dye free benadryl as needed. Someone here started with
    a different children's med.

    For some reason, 5 mg of Walgreens zyrtec isn't knocking me out. Kow .. I'm guessing it's because my inflamation /
    cytokine levels are low now. I was a real mess 24/7 when I was eating gluten, casein, soy, chemicals and caffeine.

    I'm dying to see if I get shiners from dairy, phlegm from soy, etc after my mast cells are under
    control. I'm assuming gluten is out due to the fact that I overproduce IGA antibodies.

    Tc .. X
    taniaaust1 likes this.
  7. camas

    camas Senior Member

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    Except for fruits and vegetables high in histamine. I'm wondering if my consistent August crashes are because of my cherry, berry, and tomato binging.:)
    alex3619 likes this.
  8. camas

    camas Senior Member

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    So happy to hear that you are tolerating zyrtec so well! It took me forever to work up to an adult dose. I took 1/4 of a 75mg dose of zantac this morning and am feeling woozy and a bit high. I know zantac is preferred, but I'm thinking I may have to go with pepcid which I've had no problems with in the past.

    Hope Isaac is giving you a wide berth...
    xchocoholic likes this.
  9. xchocoholic

    xchocoholic Senior Member

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    Hi aileen,

    Thanks for all the great info. I followed it as best as I could and it looks like no one here reported
    a positive reaction to ketotifen. At least not yet.

    Hi jeffrez,

    Sorry to year you reacted so badly to ketotifen. Did you try other h1 and h2s ?

    I hate to say it but I wonder if eliminating certain foods and chemicals and eating nutrient rich foods will be needed first. This would
    allow most of our body's inflamatory actions to calm down and allow our bodies to heal as much as possible. I'm guessing here
    because I can't see how any amount of supplements or drugs could've undone the hyper state my body
    was in prior to changing my diet.

    Tc .. X
  10. xchocoholic

    xchocoholic Senior Member

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    Guess how I know that there's corn starch in Wal-zyr ? I was feeling energized about 10 minutes after
    taking 5 mg and was excited that my fatigue may have been allergy related. Then this morning I
    recognized this hyper feeling as my reaction to corn starch. Sure enough it's the first ingredient
    in Wal-zyr. Next is blue dye. Sadly, it's not clearing my head.

    It always surprises me when manufacters use common allergens in meds but using common allergens
    in allergy meds is wacky .. Lol ...

    I got a lot done so far today so I'm going to stick with this for now but keep an eye on it. This could affect
    my sleep. I need to catch up on chores, etc first tho. I dread looking for allergen free allergy meds.

    The sun's out here today finally. My heart goes out to the people in the gulf coast.

    Tc .. X
    taniaaust1, CJB and camas like this.
  11. nanonug

    nanonug Senior Member

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    This matches my own experience. My currently protocol (for Mast Cell Activation Syndrome) includes both fexofenadine and ranitidine. This combo works much better than either alone.
    xchocoholic likes this.
  12. camas

    camas Senior Member

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    I didn't feel well after a small dose of a zantac (ranitidine) yesterday, but tried a full dose of pepcid (famotidine) this morning because I have taken it in the past. Seem to be tolerating the combination of zytrec/pepcid/neuroprotek just fine, so I guess that will be my protocol for the time being.

    ETA: Also got a new two-pack of epi-pens. I had become lax about getting them refilled in a timely manner since I haven't shocked since 2001. Not too bright. Better to have them and not need them, than to be caught without.
    xchocoholic likes this.
  13. nanonug

    nanonug Senior Member

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    Seems like a good protocol to me.
    camas likes this.
  14. xchocoholic

    xchocoholic Senior Member

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    Hi nanonug,

    I'd love to read your mast cell thread but my brain just can't handle all that new info right now.
    Thanks for coming here and telling us your protocal. I haven't tried Allegra yet but it's on my list.

    Hi camas,

    Sorry to hear you had a bad reaction to zantac. I'm really nervous about taking a h2. It just hit me is it
    possible that your reaction was to a filler ?

    Are either one of you noticing an improvement ? Or are you still just happy not to be feeling crappy from the meds ?

    I noticed yesterday and today that I don't feel like I have orthostatic intolerance when I'm upright but when I lay down, a million cells thank me for it. I can tell that my hypoperfusion is just as bad
    because I feel the blood going back into my upper organs. As always, it feels like my lungs are the last to relax

    I have a question .. from what I've seen the dosages of allergy meds is much higher than normal for people
    on mast cell protocals. Is this a problem for people with kidney or liver problems ?

    Tx .. X
    nanonug likes this.
  15. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Maybe your system has learned to adjust smooth muscle contraction in the arteries necessary to keep your brain supplied, but that still doesn't mean that other regions aren't undersupplied with oxygen.

    Speaking of lungs, histamine of course constricts air passages - probably usually in an attempt to minimize incoming allergens. But in mast-cells-gone-wacky, no allergen is needed but the MCs will still misbehave. Along that line, I tried diphenhydramine today before a hilly walk, but was disappointed to have no benefit. In my past experiments, using oral ephedrine as a physiological antagonist, I did originally see benefit but then subsequently didn't. Things aren't simple, that's for sure.
    camas and xchocoholic like this.
  16. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Btw, with the GI tract being currently talked about in this thread, I'll mention that enterochromaffin-like cells also produce histamine in the stomach.How that might matter, I don't know.


    And I hope that everybody is aware of the potential for certain histamine blockers leading to gynecomastia aka the dreaded man boobs. Now that really would matter. :(
    xchocoholic likes this.
  17. xchocoholic

    xchocoholic Senior Member

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    Hi sherlock,

    I was thinking it could be the zyrtec and some other meds that affect my brain make me less
    stressed about my oi or unable to get po'd by it. I noticed this with pain meds before. I'm hoping the zyrtec stops
    making me groggy soon.

    Fwiw tho, I have petite mals most of
    the time when I'm upright now so either the blood is barely making it into my brain or my
    glucose / insulin is off. I remember reading that some Alzheimers patients benefitted from nasal
    insulin.

    Great info on histamine and our lungs. Thanks. I'll have to think about this.

    Three things that have helped me gain muscle strength or energy from
    time to time are p5p, adb12 and eating something sweet before exerting myself. I always eat fruit, etc
    when I'm doing chores or running errands. I can't function otherwise.

    Oh and apparently corn starch .. Lol .. Tc .. X
  18. camas

    camas Senior Member

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    X,

    Who knows why I didn't do well with the Zantac. I haven't noted a problem with fillers in the past, but I guess it's a possibility. So far I'm mostly happy to be able to tolerate an adult dose of the other two meds together. My skin is much less dry on the Neuroprotek -- like when I was taking flax seed oil. I believe that I'm also feeling a bit calmer.
  19. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, X. Then you might be interested to know that in the world of exercising, a new thing among trendy lo-carbers is waxy maize, which is a low GI carb and an expensive supplement. It's also low on the insulinogenic scale. I never followed that much about it for lack of interest, but I do know that an inexpensive alternative is corn starch.

    I'd guess that you are very right to be thinking of blood glucose is primary in your case. Do you know that whole wheat bread and white bread are about the same, both high? That white pasta is fairly low GI? Yogurt and dairy is low?
  20. nanonug

    nanonug Senior Member

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    This is a valid question, one for which I have no answer other than to recommend regular kidney function testing. I can tell you that I take 360mg of fexofenadine a day (H1 blocker, normal is 180mg) and 1350mg a day of ranitidine (H2 blocker, normal is 300mg). These dosages are the result of trial and error and work for me but there is obviously no guarantee that they work for anyone else. To that I add plenty of NeuroProtek (9 caps/day). I take all this stuff on an empty stomach one hour before each of the the three. The fexofenadine I only take before breakfast and dinner. Good luck!
    xchocoholic and camas like this.

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