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Allergy / Mast cell treatments

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

  1. FunkOdyssey

    FunkOdyssey Senior Member

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    It's my impression that quercetin and particularly quercetin chalcone has the best evidence for inhibiting human mast cell activation at concentrations that are achievable in vivo, compared to all "mast-cell stabilizing drugs" and other flavanoids as well (including luteolin).

    The free full text study comparing quercetin / quercetin chalcone / cromolyn sodium is illuminating: http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3314669/. It's funny that Theoharides' name is on the study when it concludes that a patented water-soluble form of quercetin comes out on top (meaning he can't use it in his supplements, nor put it in olive kernel oil). It's only available from thorne in their quercetone product.
    Ocean and xchocoholic like this.
  2. camas

    camas Senior Member

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    I've been experimenting with both Quercetone and NeuroProtek. Did really well on the Quercetone for awhile and then began feeling quite agitated on even a quarter of a capsule (around 60mg). I'm not feeling that agitation on NeuroProtek even though they warn that this can be a side effect for the first few weeks. Each pill has 70mg of quercetin, and I'm taking 2 to 3 pills a day. Maybe it is just less effective or maybe it's something about the luteolin and rutin that are making it easier for me to tolerate?
    xchocoholic likes this.
  3. camas

    camas Senior Member

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    Have fun with your company! I know how it is. Our house would never get properly mucked out if we didn't have the occasional visitor. :redface:
  4. FunkOdyssey

    FunkOdyssey Senior Member

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    Quercetin is an adenosine antagonist, like caffeine, and I believe that is responsible for the stimulation, agitation, and insomnia that people see in the beginning. If that's correct, then you should develop tolerance if you continue with a given dose, same as caffeine. Quercetin is also a COMT inhibitor, and if that property comes into play at common doses in vivo, it would be another candidate for stimulation via increased norepinephrine.

    I've taken Luteolin in isolation and in my experience it has a calming influence. At high doses, I found it unpleasant actually, with a zombifying antipsychotic-like effect. So it would make sense that combining luteolin with quercetin would help counter that agitation you felt.

    I'm about to embark on a trial of quercetone myself. Standard quercetin has been helpful in the short-term to reduce GI symptoms (IBS-C) and food sensitivity symptoms. Gives alot of energy and improves cognition too.

    I reacted badly to neuroprotek, ketotifen, and rupatadine. All of them exacerbated my allergies greatly, which was a weird paradox. Neuroprotek was particularly strange since I have no problem with luteolin (peanut-sourced) or quercetin alone. Might be the olive kernel oil or the source of luteolin (chamomile).
  5. camas

    camas Senior Member

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    Makes you wonder if he added the luteolin to blunt the stimulating effect of the quercetin. I don't have a problem with COMT, but I've read that quercetin is also an MAO inhibitor, and I am MAO A R297R for what that's worth.

    Sorry to hear you are also struggling to find a drug or supplement you can tolerate. Seems to be a common theme. Odd about all those mast cell stabilizers aggravating your allergies. Although I did think that chamomile was an interesting choice given all the people with ragweed allergies.

    The Quercetone really helped my bloating, flushing, and feelings of being overheated. I sure hope you find it helpful. It's potent.
    FunkOdyssey likes this.
  6. xchocoholic

    xchocoholic Senior Member

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    Hi funkOdyssey,

    Thanks for the great info. Have you tried the normal otc allergy meds ? I just wonder if some of us
    are going to respond better to these. I'm finding that certain drugs work better than supplements for
    some of my symptoms. My sleep is much deeper on Klonopin than it was on the theanine, melatonin and 5 htp
    combo I was using.

    I don't know why drugs might work better tho. Other than their ingredients are
    better controlled. Maybe they're better designed to work with our bio chemistry too. Drug companies
    have put a great deal of research into this arena.

    Wow, look at me. Saying nice things about big pharma. Lol. Pigs will learn to fly next. Tc .. X
    camas likes this.
  7. FunkOdyssey

    FunkOdyssey Senior Member

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    I've tried allegra (fexofenadine) and zyrtec (cetirizine). I felt nothing out of the ordinary on allegra (almost could have been placebo), and felt moderately sedated on zyrtec. Neither of them helped any of my symptoms. However, at least they didn't make anything worse.
  8. FunkOdyssey

    FunkOdyssey Senior Member

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    I am allergic to ragweed! I didn't realize chamomile was closely related and have never tried chamomile on its own. I wonder if that's responsible.
  9. xchocoholic

    xchocoholic Senior Member

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    Hi funk,

    How much did you try ? I'm asking because it appears to take a lot of these meds to make
    a difference. Years ago, my dr had me on the rda of zyrtec but it didn't do anything for me except
    make me drowsy so I stopped taking it.

    I need 25 - 35 mg of zyrtec (wal-zyr actually) daily to feel the effects. I have angioedema
    so I actually felt a little better after taking the first 10 mg but the feeling faded after a few
    hours and I needed more. I typically only take 5 mg at a time but I'm findng that sometimes I need 10 to
    feel better.

    I tried taking 1/2 of a 180 mg of Allegra but noticed that it gave me a daily headache. I recently read
    that we're not supposed to split that one tho. I've yet to pick up the children's version.

    I only know about the trial and error method by reading what others are doing that's working for them.
    It seems most of those who're successful know to take more meds if they're feeling puny. I'm just getting the hang of that. Today is the first day I took 35 mg of Wal-zyr but I noticed my need to lay supine finally vanished after 30 mg. I have oi/pots thus the need to lay down.

    Tc ... X
  10. xchocoholic

    xchocoholic Senior Member

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    I can't use chamomile for this reason either. It makes my throat itch. Tc .. X
  11. xchocoholic

    xchocoholic Senior Member

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    I'm not sure what changed but I don't need to lay down anymore. : ) I feel good sitting up. I'm not
    sure how standing up will be tho.

    In the last 23 years, this has only happened when I first started taking these meds and now again starting yesterday afternoon.

    I'm not sure I'll ever find the trigger for my oi but I thought I'd give it a shot. A diet diary is how I found bacon and tomatoes trigger my fm pain. I may find a high histamine food that's triggering this.

    Possibilities include eating less raw lettuce, no more garlic, no avacodos, less chocolate, no scallops or other fish for the last 7 - 10 days?

    Added more asparagus (glutathione), two days straight of lamb broth, ?

    Other than that my diet is still wahls with teff pancakes. This includes lamb, pork, 3 + citrus daily, red leaf lettuce, cilantro, peas, salad dressing made from evoo, tahini, lemon, salt and honey.

    Supplements I'm still on include 2 megaflora probiotics, 2 blue bonnet probiitics, s boulardi, azo w probiotics. This is more probiotics than I've taken in a few weeks. I've noticed health benefits before from taking this many.

    Natural calm, b6, d best mag, glutenease, ?

    Supplements I stopped in the last 2 weeks include dhea, pregnenolone, biotin, adb12, etc ?

    Drugs incude Klonopin, wal-zyr, benadryl, loaratab as needed, ?

    I was home cleaning so dust isn't a trigger since I was covered in it.

    I left the ?s so I could add more if needed. Tc .. X
  12. camas

    camas Senior Member

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    That's great news, X! Hope it holds for you.
  13. xchocoholic

    xchocoholic Senior Member

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    Thanks camas. Treating for mast cells is proving to be complicated between identifying triggers
    and finding the right dosage of meds at the right time. All the while watching for unwanted side
    effects.

    I started a 4 day treatment of
    Orapred (steroid) yesterday in the hopes of getting my immune system down regulated. I'm just
    so tired of having throat swelling everyday. So far it appears to have calmed that symptom. And
    I didn't get my nightly rashes last nite. I'm eager to see what else it does. My allergist gave me this yesterday. : )

    While there, I also did a couple of breath tests including using an
    inhaler to see if it helped. I didn't feel any difference at all but they said my breathing improved so I was given
    an inhaler to use for accute sob. I had to take klonopin to stop my shaking about 30 minutes later so I won't
    be using it. I could've used a second Klonopin but toughed it out instead. So head's up to anyone with seizures.
    I have lung scarring so I don't expect inhalers to work for me anyways.

    I was told to use singulair again after telling my doc that I "think" it provoked pre-seizure jitteriness which required Klonopin too. My doc hadn't heard of this but after giving me the inhaler provoked breathing test, I'm not sure how many patients he sees who have seizures. So I may or may not try it. Homie don't play that game ... Lol.

    My tryptase came back low normal. I've been on bookoo allergy meds since Sept so wouldn't this
    affect that test ?

    He's not up on the mast cell protocal so I'll need to go elsewhere for that. I'm not sure where yet.

    Tc .. X
  14. camas

    camas Senior Member

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    I haven't had any luck with inhalers either. All they do is make me shaky. I have an herbal remedy (minor blue dragon) that seems to help, although my peak flow meter shows little change after I use it. I'm always in the yellow zone which makes me wonder about COPD. I have read that some with masto have COPD from high prostagladin levels. So I'm thinking that just stabilizing my mast cells is the way to go. I would try using aspirin if I could tolerate it, but it kills my stomach and gives me the big D.

    They say the best way to test tryptase is when you are in the midst of a bad reaction. Some people with systemic mastocytosis as opposed to MCAS will even show elevated tryptase when they are not having a reaction. Some say to go off meds for the test, and others say it's not necessary. It's very confusing!

    Not much to report here. Had my old bones x-rayed to see how they are holding up. I'm just sticking with the Klonpin, Zyrtec, and NeuroProtek for now. Thank you Dr. Theo. He did the preclinical work that led to the development of Zyrtec and, of course, also created NeuroProtek. Although apparently he actually recommends an old drug Atarax over Zyrtec for mast cell issues?

    Other than fewer allergy like symptoms (itching, flushing, burning, bloating) the main improvement I've noted is neurological -- almost no paresthesia which used to be constant and extremely annoying, no pressure headaches, and only one 'crushing attack' (am I the only one who has these?) since starting the Zyrtec months ago. Extra Zyrtec brought me right out of it. No improvement in energy, but no big crashes either which I typically get in the fall.

    I sure wish there was a magic bullet for mast cell issues -- that it wasn't all so damned complicated, as you've noted -- but I am happy to see even these small improvements.
    xchocoholic likes this.
  15. xchocoholic

    xchocoholic Senior Member

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    I lost my post ... :mad:

    What's a 'crushing attack' ? I have attacks that feel like hypoglycemia but don't respond to food. They respond to total rest (supine and quiet) for an hour at least and / or klonopin.

    Now that I know they respond to Klonopin, I'm thinking that they're a type of seizure. I only learned this recently.

    Small rant ... It really ticks me off when I think of all the years I wasted feeling like crap 24/7 and not knowing what was really going on because I had that Moronic CFS diagnosis. It took taking charge of my health and finding a good doc to figure out this was some kind of seizure.
    No wonder I can't trust doctors ..

    Atarax / vistaril knocked me out for 3 days. I keep hearing good things about it tho. I may try a minimal dose to see.

    http://www.drugs.com/atarax.html

    tc ... x
  16. camas

    camas Senior Member

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    A 'crushing attack' is the name I've given to these odd spells I get. I feel tremendous pressure all over my body from both the outside in and the inside out. I can move and breath, but it's difficult. It's almost like being paralyzed and, while not painful, is really uncomfortable. They are bad enough that they will wake me up out of sleep. When they pass I'm left exhausted. The only thing that's helped in the past have been Klonopin and a homeopathic remedy my doctor came up with, but I haven't really had them since I began taking Zyrtec. So they must be related to histamine?

    Thanks for telling me about your experience with Atarax. I wonder if it could be used with Klonopin or if that would be way too much sedation?

    I agree completely with your rant. I've been lucky to have a couple of good doctors who really did try to help, but the vast majority have been ignorant, neglectful, or downright abusive. I have no doubt that because I was young and female when I first fell ill that my first episodes of anaphylaxis were dismissed as panic attacks, and the rest of my symptoms as being all in my head. The Canadian Mastocytosis Society has this great paper that addresses this: Thousand Faces of Mastocytosis, Mistaken Medical Diagnoses, Patient Suffering and Gender Implications
    xchocoholic likes this.
  17. xrayspex

    xrayspex Senior Member

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    u.s.a.
    xchocoholic, how did you figure out it was a type of seizure?
  18. xchocoholic

    xchocoholic Senior Member

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    Hi x,

    Actually, I'd forgotten that my current integrative doctor saw me having one and decided it was a seizure. It responds almost imediately
    to klonopin .125 mg sublinguals too. tc and avoid doctors. X
  19. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    If you're interested, in my very first post on this thread I spell out how vistaril affected me.

    Sounds like you're having seizures too. That's how mine feel. Brain goes gaga too. I can speak
    but have no control over my answers. G nite .. X
    camas likes this.
  20. camas

    camas Senior Member

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    Could be because I have had other seizure-like episodes where my body just freezes for a few moments and I can't move, talk, etc. My doctor did say that those sounded like seizures. Don't know why he didn't make the connection with the crushing attacks which go on much longer. Now I understand why Klonopin would work, but it's odd that Zytrec has prevented them!
    xchocoholic likes this.

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