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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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    Hi there.

    I'm back. I was in california visiting family and dog sitting for almost a month but I got home this am at 1. Lucky for me
    my neighbors thought I should be awake by 8 am. Lol.

    I haven't kept up with this thread and may not read it all for awhile. I appreciate the info tho so I'll go thru it later.

    The mast cell treatments I'm using,
    20 - 30 mg Wal-zyr during the day, nasal crom for nasal symptoms only (this just makes my nasal passges hurt if they're dry), tbsp liquid dye free benadryl and
    90 mg allegra at night are working really well. I haven't found an h2 I like yet or maybe my timing is just off.

    I'm still super sensitive to gluten, and of course it was everywhere, but taking my normal sleep supplements
    + klonopin allowed me to sleep. Digestive symptoms were minimal and kefir, candidase and glutenzyme helped those.
    A bit of coffee in the morning helps undo these. It's not a cycle I plan to
    stick with but it sure beats not sleeping for days like I used to. And I'm finally getting over my fear of
    travelling and eating out.

    I still feel the blood rushing into my upper body when I lay down (hypoperfusion from oi) but I'm not getting the urgent urge to lay
    down all the time like I was prior to the mast cell treatments. That's huge for me !

    I'm still getting petite mals throughout the day tho. Getting my blood glucose up helps sometimes but not always. Esp if I let it go too long.

    I maintained my Wahls like diet esp healthy meats and leafy greens. Eating something to bring my blood glucose
    back up is required every 30 minutes when active. Walking that 80 lb dog nearly killed me but I did it. Lol.

    I have to get busy here. I need to go get groceries, etc. but I wanted to let you know this is still working well. Kow.

    Best wishes. ... X
     
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  2. camas

    camas Senior Member

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    Yay, X! :balloons: Glad to hear you are doing so well. Thanks for filling us in on your protocol to tame those crazy mast cells. :alien:
     
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  3. xchocoholic

    xchocoholic Senior Member

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    Thanks camas. I'm thrilled that my vacation / dog sitting went as well as it did. Granted my idea of doing well
    just means I didn't crash, had fun and met my obligation of watching and walking the pooch.

    I was in a hilly section
    of Ca so that was even more challenging. I gained muscles in my legs but didn't make any progress whatsoever on the sob
    when going uphill. I "thought" I would. I have lung scarring tho so maybe that's why.

    I'll be trying to unwind for the next few days. Getting off caffeine is the first step. I started eating chocolate
    and drinking coffee for entertainment (vacation mode) and it didn't even dawn on me that's probably why I wasn't sleeping
    well after a couple of weeks.

    Btw for all you pelvic pain sufferers, chocolate was out for me prior to the full mast cell treatment I'm on now.
    All this time I thought it was from oxalates. Nope ... It was from Mast cells. I've been pain free for several weeks now. No swelling whatsoever either. Tada ! : ) yay ! : )

    Just to be clear, it wasn't just the mast cell protocal that helped me this time. But it has made a big difference in my
    ability to stay upright longer and reduced / or eliminated my pain and swelling. Woohoo ! Kow ..

    In order to keep up, I took extra pregnenolone (10mg), dhea (10 mg), mb12 and adb12 too twice a day. I found that nac cleared my head a bit so I started taking 500 mg twice a day.

    I don't plan on becoming a couch potato again but I'm not sure how to manage feeling better upright while
    having petite mals from oi. It's always something with us. Baby steps. Tc ... X
     
    camas likes this.
  4. xchocoholic

    xchocoholic Senior Member

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    I'm finally backing off most of the caffeine, supplements and meds I had to take to keep up for the last few weeks.
    Whew ... What a roller coaster ride that was.

    I was feeling like my body was revved up all the time yet I didn't have the cognitive ability to comprehend much.

    It feels good not to have to push myself when my body feels heavy or I feel like taking a nap. I know y'all
    know just what I mean too.

    It should be interesting to see just what the mast cell protocal alone is doing for me energywise. I "think" it's helping
    me with my pain and swelling. I've eaten chocolate everyday and been pain free. : ) .

    And I know my oi has improved
    because I keep realizing after the fact that I'm sitting up or standing more often. Fwiw tho, I hardly ever sat up if I could lay down. I just felt too weak all the time.

    It's funny to me that I only realize it afterwards. A "normal"
    person would have no idea what I'm talking about. I'm sure I keep getting a grin on my face and others are wondering what's up with me. ; )

    I still have hypoperfusion
    in my upper body tho. I can feel the blood going back into those organs when I lay down. They relax too so it's obvius what's happening. And my stomach still gurgles like crazy when I lay down. No pain. It just feels
    like a muscle or valve in my digestive tract has released so food can go thru.

    So if my oi is from vasodialation I wonder how much of it is reversable after 23 years.

    How's everyone else doing ? X
     
  5. camas

    camas Senior Member

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    Hi X,

    Good to hear you are continuing to do well even off the caffeine! I also use it when there's something I just have to get through, but I know there will be hell to pay if I stay on too long. So I know exactly what you mean about being happy to follow your body's natural rhythms.

    Here's my latest: I tried a few drops of the doxepin one night and felt very woozy and my stomach swelled until I thought it would pop. It wore off after an hour or two whereas the drug is supposed to stay in your system much longer. So I suspect the reaction was to all of the crap they put in the syrup itself. I'll ask for it in a low dose pill form when I see my PCP next.

    I'm still waiting on the Intal inhaler. The Canadian pharmacy is trying to source it for me as they didn't have any on hand.

    I've settled on 15mg of Zyrtec for the time being and am taking just one pill of Neuroprotek a day since it makes my shins ache. It seems that most Masto patients are only taking a pill or two a day and finding that small amount helps. I'm going to experiment with adding more quercetin next.

    Nasalcrom just seems to make my sinuses burn, so I'm using it instead in my skin lotion, as some Masto patients do, to see if it will fade my spots.

    I had yet another crown replaced this week, and it's the first time I can remember only needing one shot of lidocaine. I usually clear the stuff so fast that I end up with multiple shots or just toughing out the drilling. Not sure what to attribute that to unless Zyrtec somehow slows the clearing? I actually had enough energy afterwards to get my hair cut, so felt rather accomplished!

    Here's what I take in the morning:
    NADH 10mg
    CoEnzyme Q10 100mg
    Neuroprotek 1 cap
    Magnesium and Vitamin C to bowel tolerance throughout the day

    and the evening:
    Zyrtec 15mg
    Klonopin .5mg
    Seriphos 1 cap
    Folapro 1 cap
    Perque B12 1 sublingual

    The last three are my holdover from trying the methylation protocol.
     
  6. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Apparently, it's not going to be easy for me to back off the caffeine or energy boosting supplements
    and klonopin merry go round.
    I've had that pre-seizure jittery feeling most of the day. I can't beleive how much the withdrawal is
    affecting me. I only used these for about 5 weeks total. I sure hope this passes quickly.

    I'm guessing it was the other ingredients in the doxepin too that upset your stomach since it went
    away so quickly.

    How are you finding out what most masto patients do ? I'm still not myself so I'm out of the loop on this.

    I hate dental work. That's interesting that you needed less Lidocaine. I have no idea if it's related to the zyrtec.
    I still needed quite a bit on my last crown last year so my healthy diet sure didn't help that. I'm a wreck at
    the dentist office tho. Valium would probably be a good idea for me.

    I'm taking a lot more supplements and meds than you are. We all seem to need different things.

    Are you taking digestive enzymes and probiotics ? Do you have leaky gut too ?

    It's taken me years to come up with
    certain supplements and meds that don't cause a negative reaction. Some I know I need because I feel better but others just because
    I've read that I need them or my labs indicated I was low (pregnenolone and dhea). And some I only feel bad if I try to give them up. Like fish oil. I can't feel it
    working but my joints gets stiff without it.

    I don't take many combined supplements because I need specific doses of most nutrients. Like b6. I really
    need 250 mg to make a difference in my pain. And I can't take b2 without getting urinary leakage so that's
    out. That was an important one to figure out. Lol. So no b combos for me.

    tc .. X
     
  7. camas

    camas Senior Member

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    Sorry to hear you are having caffeine withdrawls. I hope it eases for your soon.

    I take probiotics on occasion, but haven't tried enzymes in years. Probably should! For me, less is generally more since I tend react to so many things. I started to go off the methylation supplements, but found the Seriphos was helping my sleep and jittery feelings (it acts on cortisol) so decided to stay on those.

    I forgot to mention that I really like the Walgreen's ketotifen eyedrops. Not only do they help my itchy painful eyes, but they work well in my sensitive ears too. Not exactly an approved use, but what the hell...

    I've been following a couple of mastocytosis groups on facebook. They are mostly populated with those who have difficulties with shock, so it can get kind of stressful at times, but I've also picked up some tips. It's interesting to note that only around 17% of masto patients are 'shockers' the rest are 'leakers' and sound a lot like us.

    I like the cohesiveness of these groups and how hard the U.S. Mastocytosis Society works for it's members. They have a yearly conference for patients and invite all the mast cell experts who are very accessible. Must be nice!
     
  8. xchocoholic

    xchocoholic Senior Member

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    I can't eat without taking digestive enzymes. I either need about 1/2 cup of fresh papaya at each meal
    or a strong supplement. I've tried most digestive supplements on the market. Creon is my new best freind. Lol.

    If you're not needing them to digest your food I wouldn't bother.

    I checked out the seriphos a little. I liked what it said it would do but I don't understand why the ingredients
    would do that. That part was over my head.

    My itchy painful eyes are typically from an allergy contact for me. If I don't change my pillow cases
    frequently or use too much laundry soap on these, my eyes hurt. Not washing my hair often enough
    makes this worse too.

    My eyes are dry per my optomotrist tests
    but I don't know why. I have the meds but never remember to use them.

    I'm not sure what a shocker vs leaker is yet. Does that have something to do with anaphylaxis ? My dd gets anaphylxus
    but is "healthy" otherwise.

    I haven't caught up from my trip yet. I'm tracking down the meds
    I need to refill still. I had to go see my doc. Then my ins co decides I need to get my creon by mail now.
    So I need a 90 day script faxed to them. And my Klonopin, which I need for seizures, can only be found 20 mintes away today.

    I'll be so happy when I get caught up and can stop running everywhere. Tc .. X
     
  9. camas

    camas Senior Member

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    It's pretty clear by looking at me, that I'm digesting my food. Oh the joys of middle age. lol

    I don't know why the Seriphos works either. It was recommended by Rick Vank in his protocol some time back, so I've just stuck with it.

    I believe the difference behind the shockers and the leakers is that those whose mast cells tend to degranulate en masse will go into shock, while others have mast cells that leak on a continual basis leaving them feeling generally crummy. It is also possible to be both a shocker and a leaker, but it seems that most tend to fall into one camp or the other. Sometimes low level shock is also mistaken for other things such as anxiety. I'm sorry to hear your daughter experiences anaphylaxis. It's scary as hell.

    I was planning on going in yesterday to have my blood drawn for a tryptase test, among other things. I'm really not expecting much from that test, but thought I'd go off my Zyrtec for a day to help its chances. I was so weak, I couldn't make it in. After taking my usual dose, I felt stronger. I've never associated histamine with muscle weakness. Guess this is something to look into.
     
  10. xchocoholic

    xchocoholic Senior Member

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    At this rate, they'll have to pry Wal-zyr, etc from my cold dead hands to get me off of these allergy meds. Lol.

    Have you had your tryptase tested before ? I may actually have that in my labs. Didn't I read that it needs to be done a certain way tho ? Doesn't it clear quickly so it's hard to catch ?

    I told my
    Doc was I was doing the other day and she said she was up on the terminology but not aware of
    the mast cell protocal. We covered 3 meds and discussed my jammed thumb in 15 minutes so I'm not sure she'll remember to look at this. Do you know of a quick guide for medical professionals ?

    I can't believe how much better I feel. I'm stronger too but I thought it was the adb12. And it
    could still be in my system. I took it everyday for about 5 weeks then got off it a few days ago.
    But I felt stronger before on adb12 so apparently I need it.

    The first few times my dd had anaphylaxis we were scared but now we've got it down. Most of the
    time she just needs Benadryl. Thanks for explaining the difference. It sounds like I'm a leaker but sometimes my throat feels like it's closing up and I need Benadryl.

    I didn't realize Rich V recommended seriphos. I sure do miss him. He was just so level headed and informative.

    I forgot to ask. How's your thinking going ? I'm not all here mentally a lot of the time. I was out running
    errands today and noticed that I had my polo shirt on inside out. Roflmao.

    Tc .. X
     
  11. camas

    camas Senior Member

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    I've never had a tryptase test. Yeah, from what I've read they say it's better to do all these tests when you are in the midst of a reaction, but I'd just as soon not!

    Here's Dr. Afrin's MCAS Physician's Primer that was updated in August. A lot of it went over my head, but I appreciated his conversational style, and that he called them "these damned cells." Indeed.

    Do you and your daughter both carry epi-pens? I did for years thinking I'd probably never need to use them, but when I did it was critical.

    I've read conflicting things on mast cells and B12, but I'm sticking with mine, too. Rich was a truly decent person. So sad that's he's gone.

    I haven't had significant issues with brain fog for years, but I do believe the Zyrtec helps some. At least my spelling seems to be slightly better. :)
     
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  12. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    I tried your link to dr afrin's info but my android said it failed. Here's the name of the file.

    People.musc.edu

    I'll try this again and I can google it if that doesn't work on my laptop later.

    I don't carry an epi pen but my dd does. My swelling just started this past year or so and
    so far it's been something Benadryl could control. I use liquid or dissolvable Benadryl for a
    quicker response. I should probably see an allergist but I just haven't yet.

    I'm with you on getting tested while it's going on.
    I'd want to be in a controlled setting to get my allergy responses provoked and tested. Do they do that ?
    On my last skin prick test at my allergist's office few years ago, I over reacted and felt horrible but was allowed
    to drive myself
    home. In fact, I got a HUGE welt on my back about 30 - 60 minutes after I left the office from dust but when I called the doc's office
    they didn't ask to see me again. At that time dust was my biggest allergen.

    I didn't notice any problems from taking mb12 and adb12 in the last few weeks. I'm guessing problems with b12
    or any supplement or drug or food just depends
    on each person's genes, gut microbia, other nutrients, etc.

    My brain fog got a lot better just from eliminating gluten, sugar, etc a few years ago but I'm still not all here. I'm
    told it could be my age. I'm 57. I'm fighting this idea tho and trying supplements like fish oil, coq10 and nac.
    I have citicoline on hand to try next. Nac helps clear my head but I'm not sure it's enough.

    It's a functional problem (slowing down, not thinking things thru and forgetting things) and may be linked to my klonopin or theanine. Theanine and Klonopin are known for slowing down brain function. I was using Theanine for myoclonus but just switched back to klonopin after being off it for 6 years. Klonopin controls my myoclonus
    and helps my insomnia better so I may not be able to stop taking this. I'm playing with taking daytime
    anecdotes at this point.

    Sorry for the book. I'm a wee bit too energized lately. Lol. Tc .. X
     
  13. nanonug

    nanonug Senior Member

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  14. camas

    camas Senior Member

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    Here's the full link. I hope this works for you:

    http://people.musc.edu/~afrinl/MCAS_Primer/MCAS Primer for Physicians - August 2012.docx

    They say if you are prone to any kind of throat swelling, that you really need to have an epi-pen on hand. (Nag, nag, nag :) )

    Your doctor can leave a standing order for these tests so that you can have them run when you have your next bad reaction. I do my best to avoid reactions and, when I do have them, I'm usually so weak that I can't imagine trying to get in to get tested.

    It's hard to imagine that you'd have any kind of cognitive decline as young as 57! (I say that as a 53-year-old. :) ) I've been using NADH for years because it's the one thing I can count on to help my brain fog. I tried switching to NAD for a while and it just didn't cut it. I haven't had any luck cutting gluten or sugar. Although I do try to keep sugar and sweets out of the house since I have NO discipline. lol
     
  15. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    I finally saw Dr. Afrin's info on mast cells. I had to use my laptop. These wouldn't come up on my android. I didn't understand it but it looks like interesting info for my doctor. I'm not sure I want to go through all the testing. And my doc may have enough of my lab results already to diagnose this anyways. I've had a ton of testing. I'll just need to bring this up next time I see her. Hopefully by then I'll know what I'm talking about too.

    Thanks for the tip on NADH. I googled it and was surprised to see it was related to B3. I'll have to try this. I had a good reaction to ADB12 (muscle strength) and P5P (energy) so I might respond to this too.

    Eliminating gluten, dairy, corn, soy, sugar and most chemicals was huge for me as far as brain fog but not enough. Before the elimination diet, I was always in a daze and buzzing and that's gone. I had ataxia and have seizures tho so realistically, I'm not sure how much brain function I can expect. Certain supps are helping so I've not given up yet. Right now, 500 mg Jarrow NAC is clearing my head for a little while after I take it so I'm taking it twice a day.

    I hear you on the epi pen but I've done so well with Benadryl that at this point that it's a hard habit to break.

    tc ... x
     
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  16. lansbergen

    lansbergen Senior Member

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  17. lansbergen

    lansbergen Senior Member

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  18. lansbergen

    lansbergen Senior Member

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  19. lansbergen

    lansbergen Senior Member

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  20. xchocoholic

    xchocoholic Senior Member

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    Interesting research. Thanks. I'd love to be evaluated and treated if possible for these immune system problems. But what about finding and treating the root causes ? How's that going ?

    I've treated for parasites in the last
    year but I'm not sure we got them all. We nailed h pylori tho. I have a mercury problem. Plus the reprocussions of having a
    leaky gut for years. And as a card carrying celiac, I don't stand a chance of keeping my intestinal villi healthy.

    I feel so much better just stopping my mast cells from going crazy that I'm not sure it's worth trying to eradicate
    any more parasites or detox mercury. I'll always treat these in a moderate holistic way but stronger treatments
    can cause other problems that I'm not sure my body could deal with. Or if a strong treatment would even work.

    Tc ... X
     
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