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Allergy / Mast cell treatments

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

  1. Crux

    Crux Senior Member

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    Hi X;
    So, I'm wondering if the zinc amount is too high, and if there's enough copper. I've also read of seizures from copper deficiency.

    Copper is involved with metabolism of histamine.

    Chocolate is high in copper. ( I think that's why I desire it.) Okra is also high in copper, but it doesn't attract me so much. But a good mushroom sauce, ( mushrooms- good copper source), can make almost anything eatable.
  2. xchocoholic

    xchocoholic Senior Member

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    Hi crux,

    I appreciate the info, but you may have to track this down without me.

    I researched seizure info back in 2006 - 2008, tried the modified atkins diet, evco, eating every 2 - 3
    hours, etc but never found anything that works as well as avoiding gluten and caffeine, getting
    enough sleep, taking a Klonopin when I need it and now taking allergy meds throughout the day.
    I'm very happy to have these solutions for now.

    Fwiw, I've had petite mals since I was a child but never to the extreme I had with cfs. So this may be something that I just
    need to treat medically now.

    Tx .. X
  3. camas

    camas Senior Member

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    X,

    Great to hear that you are doing so well on the Zyrtec!

    I seem to be having difficulties with the H2 blocker side of the equation. Didn't feel at all well on Zantac, and Pepcid seems to be aggravating my tinnitus, paresthesia, and neuropathy. Driving me nuts. Suggestions welcome...
  4. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Thanks. I'm enjoying the energy, etc for now. I'll have to look further into the corn starch angle
    later once I get a few things done around here.

    With the reactions you listed from pepcid, my guess would be that you're reacting to a filler. If it were
    me, I'd be looking for gluten. This causes funky neuro symptoms for me. Have you tried a different brand ?

    I've only had 1 pepcid recently but I took it for stomach pain after eating waaaay too much pie Friday. It helped
    at first but not enough. I only had stomach pain tho. I "think" I needed a digestive enzyme instead. That's the first 1 h2 I've had in 7 years at least.

    I bought Walgreens pepcid, but I haven't started the h2s for allergies yet tho so I'm not sure what to look for.
    Did you check out the mast cell forum for info ?

    I took 1/2 of a brand name Allegra tablet at 2:30 pm today and it put me to sleep and dried out my sinuses
    so bad it hurts to breath. So much for Allegra. I don't have runny nose, watery eyes, etc so I don't need this one.

    So no Vistaril and no Allegra for me. Tc .. X
    camas likes this.
  5. xchocoholic

    xchocoholic Senior Member

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    I had another idea. Are you supporting your liver while you're trying this ? I ask because
    when I did my parasite cleanse about two months ago my first symptom for three days straight was vertigo. Taking Himalaya
    Liver care eliminated this is an hour easy.

    I'm not not well versed on liver treatments so I'm just using this and drinking warm lemon water on an
    empty stomach. The lemon water is hard on my teeth and causes sensitivity despite rinsing afterwards so I use this sparingly.

    Hth .. X
  6. camas

    camas Senior Member

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    X,

    Thanks for your suggestions. I'm okay with corn and gluten (surprising, I know!). I'm starting to think this might be a chemical reaction to the drug itself because I'm noticing some diaphragm paralysis which I get with bleach, cigarette smoke, etc. At least I can feel my fingers again which certainly helps with typing. lol

    I'll look on some masto sites and see what I can find. Supporting the liver is a good idea. I think I have a bottle of milk thistle in the back of my "medicinary" somewhere. Time to dig it out!

    ETA: Okay, did a little googling and see that "P450 production may be inhibited or substantially used up by H2 blockers." I know I have problems in this area, so looks like I better back off for now.
  7. xchocoholic

    xchocoholic Senior Member

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    Thanks for posting the info on p450. I wonder if that's a cfs thing ? Fwiw tho, I couldn't handle ANY drugs or supplements without feeling poisoned
    when I was eating gluten, dairy, soy, etc but after being off these for 1 - 2 years all of the sudden I could handle most.

    Gluten and dairy are known for doing insidious things to our bodies and not everyone can tell it's happening.
    Heck, I ate gluten successfully for 15 1/2 years after getting gluten ataxia without realizing what it was doing to my brain.

    It's late and I can't thnk anymore, but have you seen theglutenfile ? Do you know about the autism gfcf connection ?

    G nite .. X
  8. camas

    camas Senior Member

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    Yep, I've been tested for celiac, gluten sensitivity via saliva test as recently as last year, and even went gluten free for awhile (that was an expensive foray) all for naught. I am allergic to soy and avoid it as best I can -- not easy when it's in everything.

    Cheney popularized the p450 pathway issues as far back as the 90's, and I believe he still writes about it. I came to know it was an issue for me through controversial means. There was a professor up at OHSU who theorized that people with chemical sensitivities were mildly porphyric. My doctor at the time thought this was interesting, and sent my samples to the Mayo clinic which did show I was excreting a small amount of porphorins. Then all hell broke loose and the professor lost his job over his theory, and my subsequent doctors said this was all nonsense. All I know is that the treatment for those who have 'real' porphyria attacks is glucose and lots of it. When I have a reaction to a chemical (as I finally figured out today when my diaphragm went weak) a tablespoon or two of straight sugar will stop these reactions -- sometimes immediately if I catch them early.

    It's been so long since I've taken any drug (aside from klonopin) that in my overzealousness to try this new regimen, I forgot to check the porphyria safe drug list. The good news is that Zyrtec (which I've had no problems with) and Ketotifen, should I want to try it, are safe in this respect. Well, enough of my ramblings.

    Good nite from the west coast!
    xchocoholic and merylg like this.
  9. xchocoholic

    xchocoholic Senior Member

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    I can't tell you how many times I've googled porphyria but can't remember any of it. Lol .. I'll look again tho.

    Good to hear Zyrtec and Klonopin are ok. I'll have to check my other drugs.

    That's so sad and so typical that your professor lost his job over his discovery. It's a good thing we have
    the internet to discuss these treatments.

    Tc .. X
    camas likes this.
  10. camas

    camas Senior Member

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    This may be another avenue to explore in calming mast cell stimulation. I found this on a facebook post from a talk Dr. Theorides gave to the Colorado Mastocytosis Society this year.

    Dr. Theo has been involved with research with 30Hz penetrating mast cells, and the mast cells were stimulated…he said our cells are not necessarily tolerant of the wavelengths from all the electrical components we are surrounded by. He has several clients who get itchy and flare around computers. He mentioned old use of grounding screens on computers, he thinks grounding is a good idea.

    For anyone who may have missed it, a couple of years ago we had a long discussion about grounding. Since it wasn't a terribly expensive one-shot deal, I bought an 'earthing sheet' and my boyfriend and I both felt it helped us sleep better, well that is until he accidentally cut through the grounding wire while doing some pruning outside the bedroom window. lol Time to fix that wire and put the sheet back in action.

    Here's a link to the earthing thread: http://forums.phoenixrising.me/index.php?threads/earthing-for-protection-from-emfs.5000/
  11. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Thanks for the info. The data on mast cells is overwhelming. I "think" I'm ok with emfs.

    It seems that most of the people I've read about on the web started out like I did trying to avoid
    trigger foods. And at some point we realize it's not going to work. At least not on it's own.
    I gave up chocolate again and will limit my coffee because I'm having breakthru pain. It's a tenth
    of what it was but I can't imagine that's a good sign.

    I noticed several people taking a lot of drugs for this. I've yet to add an h2 but I see it's highly recommended. I want to try it away from a meal today. That way maybe it won't interfer
    with my digestion.

    I'm trying to find info on steroids or other ways to stop my hyperactive immune system. I remember when
    my dd had an anaphylactic episode her docs would give her a short term dose of steroids. It calmed
    her immune system down.

    Have you tried steroids or anything else that suppresses the immune system ? I was thinking it might be necessary
    to start with this in order to get a handle on the problem.

    I was looking at natural steroids too. I started taking 10 mg dhea and 10 mg pregnenolone again about a week ago. So far it hasn't helped tho. I'll be increasing it today. My labs showed that I was low on these at one point. I'm still looking at other natural steroids.

    Tc .. X
  12. CJB

    CJB Senior Member

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    What kind of pie?:mad:
  13. xchocoholic

    xchocoholic Senior Member

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    Lol .. I love that's what you got out of all that. Heehee

    My son and I had lunch at a raw vegan gourmet restaurant and he got chocolate ganouche (sp?)
    and I got p-not butter (made with sun butter). I was in heaven.

    They gave us such big pieces it took me 24 hours to finish them off but I did it. Yay ! Or so I thought.

    I've been googling raw vegan recipes since we were there. I also had zuchini noodles instead of pasta with a truffle sauce.
    Yum ..

    Tc ... X
    taniaaust1 and CJB like this.
  14. CJB

    CJB Senior Member

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    :rofl:

    Vicarious thrills are better than no thrills at all!!
    xchocoholic likes this.
  15. camas

    camas Senior Member

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    Hi X,

    Around 10 years ago I was put on steroids after I had two episodes of anaphylaxis a week apart. It turned into a three month nightmare where I felt the steroids were making me sicker as I was becoming reactive to everything, but when I attempted the typical taper to get off them, my throat would swell and I'd start choking. Neither the doctor nor hospital knew what to do with me, so I stayed locked in the guestroom with my hepafilter going full blast giving myself nearly daily shots of epinephrine since even antihistamines contributed to the reaction. My late husband made me batch after batch of chicken soup because it was the only food that didn't increase the swelling. I was finally able to slowly, slowly taper off the steroids and recovered quickly as soon as I was off. I don't know if I was reacting to the steroids themselves, or if knocking down my immune system was giving some pathogen free reign and contributing to the swelling. I lost 40lbs during this ordeal, and felt fortunate to have made it out alive. I won't be doing steroids again...
  16. xchocoholic

    xchocoholic Senior Member

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    I'm sorry to hear you went thru that. But thanks for sharing your story. Thank goodness your hubby helped you.

    I never even considered
    that pathogens would take over. imho, that's a good warning for all pwcs. Seeing as how I was just
    treating for parasites and may need to re-treat soon for their off spring I probably shouldn't try this either.

    Does treating cfs ever get easy ? Tc .. X
    camas likes this.
  17. camas

    camas Senior Member

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    Some day, hopefully.
    xchocoholic likes this.
  18. xchocoholic

    xchocoholic Senior Member

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    I'm backing off the coffee and homemade flax muffin for breakfast today. Evidently I'm one of those people who
    can't resist cheating on a diet if given the opportunity. Lol .. I blame my mother. Hahaha

    Coffee keeps my adrenals racing for a good 24 hours after drinking it. : ( The upside is that I know this.

    The flax muffin was too sweet for me to be eating in the morning. It contained egg whites too tho and I produce
    antibodies to these. Bummer ...

    The most interesting part of taking Wal-zyr is how it stops my muscle fatigue and gives me energy. I haven't
    trued just taking corn starch yet.

    I'd heard
    Allergies could make us tired but so far I'm not feeling better from taking allergy meds that made me sleepy. I seem to be
    overly responsive to those. Vistaril literally knocked me out for 3 - 4 days. Benadryl, allegra and possibly name brand zyrtec so far make me tired and don't
    give me energy. I was told to keep trying these tho since this reaction may stop and the mast cell protocal involves taking
    a variety of antihistamines. I've only tried 1/2 a pepcid per day and I'm taking it on an empty stomach
    so I avoid not having acid for digestion.

    I have to
    take Wal-zyr throughout the day tho and 5 mg taken every couple of hours works better than 10. Taking 10 seems to he too
    much at one time. And taking too much total is drying out my head and giving me a slight headache.

    I was trying Nasalcrom but it really dries out my nose too much. I may try putting a little on a q-tip
    and inserting that in my nose so I'm not getting as much.

    I also realized yesterday that I was forgetting to take my Solgar b6 250 mg and Doctor's best magnesium for
    Pelvic pain. In fact, I'd stopped most my supplements after a couple of days on this so I'm back on some.

    It's a real pita being a pwc and trying to remember all this.

    Tc .. X
  19. camas

    camas Senior Member

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    X,

    Good to hear you are continuing to do well on the zyrtec. I hope you tolerate the h2 blocker, too.

    My stomach is doing much better. I'm not sure if it's because I've given up tea and cut back on chocolate (failed at going cold turkey, ha) or if it's a downwind effect of the NeuroProtek.

    I am having an intriguing new symptom though - bone pain that started in my shins and worked up to my thigh bones and is bad enough to make falling asleep difficult. Strange because NeuroProtek is supposed so stop bone pain, not cause it. I went off the NeuroProtek for a couple of days and the pain eased, then took just a couple of pills last night and it's back, so I can only surmise it's the culprit. Anyone else having this issue with NP?

    I'm still waiting on my overdue skin biopsy results to see if I have TMEP mastocytosis. If the results are positive, as the dermatologist suspected, I'll be seeing my doc and asking for a bone scan, among other things.
  20. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Sure sounds like the NP was causing your pain. I hate that we have to use the trial and error method for
    testing everything but I sure haven't seen anyway around it. I read that dr afrin says we may never find our triggers.

    It really gets confusing when we consider that we don't always feel or see a reaction. It sure looks like something in my life is causing vasodialation since Wal-zyr eliminates it but I have no idea what or how many things.


    Hope you get your results back soon. What will the bone scan tell you ?

    I'm not sure if I'm going to pursue an official diagnosis. I have too many already. Lol. I called and
    left a msg with my doc tho. So if she thinks I should I will. Nothing painful tho. Been there done that.

    Fwiw, I skipped the coffee and muffin today and didn't feel jittery. Duh. I knew it would make me
    feel jittery but I just have to "do myself in" sometimes. (sound familiar ?) Lol.

    Tc .. X

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