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Allergy / Mast cell treatments

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

  1. xchocoholic

    xchocoholic Senior Member

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    I don't know why zyrtec would prevent them either. I'm still getting these on zyrtec.

    My known triggers are gluten and caffeine and from what I understand these are neuro reactions to
    proteins.

    Hmmm, I read today that aspartame can cause seizures because it's an amino acid the body can't process without other
    amino acids. So maybe zyrtec is blocking some amino acid for you or providing your body access to
    more ?

    We'll have to think about this one. Tc .. X

    Ps mylan 5 mg chewable tablet montelukast contains aspartame which is Probably why it's triggering seizures for me.
    I feel bad for all those kids who're taking this and don't realize they're having little seizures. My allergist
    didn't know about this and he's been practicing for 30 - 40 years. : o
  2. camas

    camas Senior Member

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    Just a quick look at the literature shows that H1 blockers can actually lower the threshold for seizures. That's not good if you are already having problems with seizures. Not sure why I would be having the opposite reaction, but my body does tend to be contrary. :confused:
  3. suzanne

    suzanne Senior Member

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    Thanks camas- I have now followed your lead and found all these posts about mast cells!

    I have not had time to study all the preceding posts, but have skimmed through.

    I am having a terrible time with itching and rolling migraines. I trialled one capsule of neuroprotek but had bad headache and nausea for about 8 hours or so after I took it- I do not know if this was due to the leutolin or one of the other ingredients. It may be the quercitin as this has given me headaches before.

    I would love someone to tell me about a protocol of H1 and H2 blockers- I assume this is something like zyrtec and zantec taken together. Perhaps someone may help me with what a starting dose might be. When I have taken antihystamines before they have made no difference- maybe the combination is worth a try?

    I have also ordered the perilla oil, in desperation really. It just seemed a cheap and easy way to get luteolin into me? Is this likely to be helpful?

    I am seriously lost in a bad flarre of inflammatory symptoms and desperate to try something that sdoent make me feel worse.

    BTW, I saw a post somewhere on this site that said the mast cell problem is likely to stem from an angiotensin II issue. I did do well on an olmetec once ( which blocks this) , so maybe something in all this mast cell/ angio rector thing?

    Any help would be appreciated

    Suzanne
    camas likes this.
  4. suzanne

    suzanne Senior Member

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    Here is what I have done: About an hour ago I took 150mg zantac (12 hour action) and 10mg of zyrtec (24 hour action).

    I almost instantly felt unwell with nausea and headache- exactly the same reaction I got when I took the neuroprotek. It is a very bad feeling- not just possibly worse but significantly worse. I feel like I want to puke. I also have gotten increased itch symptoms which seems kinda odd?

    Is this possible? Any views on what might be happening here?

    I have emailed the Algonot people about my reaction to Neuroprotek and they said they are going to ask Dr Theo (sp?)

    I have no idea why I feel so bad, but perhaps I have jumped in too fast?
  5. xchocoholic

    xchocoholic Senior Member

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    Hi suzanne,

    With the exception of avoiding your known intolerances or chemicals such as dyes or aspartame, all any of us can do is experment with different meds and supplements to see how our bodies react. Different brands contain different fillers too.
    I feel better with Walgreens zyrtec because it contains corn starch.

    All chemicals that mast cells contain
    are subject to possible treatments. Histamines (h1, h2, etc), leukotrines, prostaglandins, etc.

    I probably would've felt like vomiting from taking 10 mg zyrtec and zantac at the same time too. Try taking these
    at different times and with food. Zyrtec can be split because it's not coated but I never looked at zantac. So far I've only
    used pepcid and it comes in blister packs.

    I'm still new too tho and haven't look at all the possible treatments. I chose zyrtec because it helps the most with swelling.

    Tc ... X
  6. suzanne

    suzanne Senior Member

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    Thanks X. I know that I am not alone in all this experimenting Grr.

    "I probably would've felt like vomiting from taking 10 mg zyrtec and zantac at the same time too" ....

    Really? It is now a few hours on and I am a little better but still affected. I wonder what I should do next? Should I stay with the zyrtec - take only 1/4 next time ( this has a 24 hour action) and then add the zantac every 12 hours- but again a lesser dose? I realsise it is experimental but I am trying to guage if this is worth sticking with and if others have had such a strong and weird reaction to the antihistamines. Odd you know as I do not remember having this type of reaction when I have taken these anti -h's seperately. Mmmm
  7. xchocoholic

    xchocoholic Senior Member

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    Sucks, doesn't it ? Yes on the vomitting. Sipping a little fresh lemon juice in room temp water should gets rid
    of the feeling.

    Fwiw, experimenting with mast cell treatments has been well worth it. I hadn't
    made any progress in my orthostatic intolerance for 20+ years until now.

    For the most part, I could only tolerate 5 mg of Zytec at one time in the beginning.
    Now I can take 10. The idea behind using drugs is to counter the chemicals over active mast cells are releasing. I haven't gotten into how to stop my crazy mast cells themselves yet.

    I've had both positive and negative reactions to pepcid so I'm still working on when to take these.

    Tc .. X
  8. camas

    camas Senior Member

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    I agree with X. Start with really small doses of maybe just one drug at a time so that you can see what you tolerate. I've tried every H1 and H2 and, out of all of them, can only tolerate Zyrtec. Actually I didn't even do well with brand name Zyrtec but am okay with a generic children's syrup from Kirkland.

    If you are on facebook you can also join Dr. Theo's fan page and ask questions about NeuroProtek and get pretty quick responses.

    Sorry about your nausea. Hope it passes soon.
  9. suzanne

    suzanne Senior Member

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    Many thanks guys.
    Based on your responses I am going to try and stick with this for awhile and see if I can figure out something to make me feel better. I will try the lower doses and one at a time approach.
    BTW , I emailed Dr Blanco in Spain. He suggested I get tested for
    alpha-1-antitrypsin deficiency and celiac disease
    I have had celiac tests come back negative before ( wheat intolerance showed in poo sample, but not celiac). Perhaps worth while to have the AAT test?

    cheers
    Suzanne
  10. camas

    camas Senior Member

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    It seems that a number of masto patients do better when they avoid gluten even if they don't test positive for celiac or gluten intolerance. I went off gluten for awhile and didn't really see a difference, but wonder if I gave it enough time. May have to try again.

    I haven't heard of alpha-1-antitrypsin deficiency. Will have to look that up!
  11. suzanne

    suzanne Senior Member

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    There is a bit of research available on the internet that links the deficiency in alpha-1-antitrypsin to Fibromyalgia/ CFS and autism? It is worth a read. Do a search with alpha-1-antitrypsin and Dr Blanco and it will come up.

    Dr Blanco recommends that we all get tested for the deficiency as the treatment given to people with this deficiency (normally for lung disease such as emphysema) seems to have some benefit to people with FMS.

    On a further note about my experiment with H1 and H2 products. I took zantac last night- took 150 mg again but by itself.

    I woke at 4 am and could not move my head due to stiffness and soreness of my neck . I noticed it was sore after my first dose of zyrtec and zantac but wow, it is impossible to move my head at all today. Could this be a reaction to the zantac? Anyone else had anything like this happen in the beginning and should I just try and persist? Is it likely that the does is too high- I am just at a loss as to why an antihistamine would do this?

    Any thoughts would be really appreciated. To give you an idea about how bad my neck was- I could not turn over in bed- ended up getting up at 4.30 am and searching for some voltaren to rub on it.

  12. camas

    camas Senior Member

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    Thanks for the info on alpha-1-antitrypsin.

    It looks like muscle pain is a known side effect of Zantac. Maybe you could start with just 1/4 of a dose and see how you do?
  13. soulfeast

    soulfeast Senior Member

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    Interesting from Dr Theo's research on atarax:

    A PILOT, OPEN LABEL, CLINICAL TRIAL USING HYDROXYZINE IN MULTIPLE SCLEROSIS

    http://www.mastcellmaster.com/documents/IJIP-MS-hydroxyzine.pdf
    camas likes this.
  14. camas

    camas Senior Member

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    Thanks, soulfeast. I believe he recommends it because it over other H1s because it penetrates the blood brain barrier? Interestingly enough, the difference an H1 has made in me has mostly been neurological improvement.
  15. soulfeast

    soulfeast Senior Member

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    I think zyrtek for some crosses BBB a bit? And Atarax does like Benadryl but MD said not as harsh as Benadryl.
  16. camas

    camas Senior Member

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    Oh, looks like Zyrtec does cross a bit. Probably why it is somewhat sedating even though it's not supposed to be!
    soulfeast and merylg like this.
  17. Adster

    Adster Senior Member

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    I've just stopped my 2.5mg nightly dose of Zytec as it was causing too much brain fog and depression.
    merylg likes this.
  18. xchocoholic

    xchocoholic Senior Member

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    Hi Adster,

    Just 2.5 mg ? Did you have specific symptoms that you thought might respond to allergy meds ?

    I'm trying to stick with 20 mg zyrtec (Walzyr tablets) daily but I have mild to severe mostly internal swelling / angioedema 24/7 without the meds. I was on Benadryl as needed for severe swelling, esp mouth and throat, but feel better taking something all the time.

    I feel better if I take 5 mg at a time throughout the day. So far, I have less brain fog from zyrtec if I start the day with 10 mg after breakfast then wait until the afternoon to take more.

    As long as I'm here, I've been playing with a variety nsaids for pain and swelling instead of counting on the H1s. And it's working better. I'm on Aleve and Advil and taking these with meals to try to avoid NSAID digestive damage. The 4 days of orapred didn't do anything for this. Avoiding triggers helps but I'm not sure what all they are. tc ... x
  19. Adster

    Adster Senior Member

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    Hi xchocoholic. Yep, a very low dose I know. I'm very sensitive with most meds. I suspect I have high histamine at times, and respond poorly to insect bites and high histamine foods, so I thought I'd give it a try longer term. It certainly helped my sleep and gut function, but the negative effects were too great.

    The NSAIDs stuff you mentioned is interesting. I've got a back injury that won't settle down due to, I suspect, chronic inflammation. Currently cold water immersion is helping but it's taxing on the energy. I might need to try NSAIDs but am concerned about gut damage. Cheers.
  20. xchocoholic

    xchocoholic Senior Member

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    Hi Adster,

    Which zyrtec were you taking ? I'm on Wal-zyr because brand name made me feel drowsy.
    I'm usually over sensitive to meds too but in this case
    the amount of med required to counter antihistamines or other chemicals is dependent on the extent of the problem.

    Trying to find the right med for each person is a royal pita.

    Was it children's ?
    I've noticed children's advil and motrin make me drowsy too but the adult dose doesn't. I haven't tried children's zyrtec
    more than once so I can't remember what it did. Of course children's liq benadryl makes me drowsy but
    I'm taking it at night so it's ok. Too much benadryl dries out my whole brain. Lol

    I'm enjoying the pain and swelling relief from the nsaids. I'm taking adult Aleve (brand name) with breakfast and dinner.
    And adult Advil (brand name) as needed in between. I'm too tired right now to remember exactly why nsaids work
    on pain and swelling but it's on the web.

    And I don't know if this is true but I heard from a freind not to lay down after taking these too because
    they might settle into a part of the digestive tract and cause damage in that spot.

    I'll look for more natural ways someday but I needed the relief from the swelling.

    Tc .. X

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