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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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    You can't conclude that you're lack of anaphylaxis is due to this treatment.

    My DD has had anaphylaxis for 8 years now and rarely reacts anymore. But when she does she knows to use her meds and look for the source.
  2. Dainty

    Dainty Senior Member

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    Well, duh. Of course you look for the source. :p

    When the source turns out to be compounded Benadryl, containing only the single active ingredient diphenhydramine, it can be tricky.

    And when the source can change from week to week, and develop in as little as 2 exposures, that also makes it hard.

    Anyone is welcome to read my original post in this thread, where I gave a brief overview of my extensive lifelong history of severe allergies. There were times I could not eat any foods at all and the only reason I can get out of my environment is with a sealed chemical cartridge respirator (a.k.a gas mask) that had to be boiled for weeks on end before it was tolerable (5 other mask materials were not tolerable).

    I can now eat about 15 foods regularly, and experiment trying other foods with a mild stomach ache as the worst I can expect. I can now crack the seal of my mask when in unsafe environments, and instead of an immediate massive reaction of my airways closing as when used to happen if the seal was even slightly loose, now there is no reaction. The massive rash that I used to get over large areas of my body that had me scratching myself until I bled is now limited to small areas of one part of my body while the fascia is shifting, and the itchyness does not grow to those horrible welts.

    You may conclude whatever you want to, but for those familiar with my medical history it's pretty obvious what's taken place.

    I'm not saying I have/had a Mast Cell Activation Disorder. I put up a summary of my experience with allergies, treatments, and reactions, and you said that I "fit the mastocytosis profile quite nicely". I understand that my improvement on this treatment is unsettling to your mindset of how this condition works, and will now respectfully withdraw from the discussion.
  3. xchocoholic

    xchocoholic Senior Member

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    :oops: Sorry Dainty,

    I didn't mean to yell at you. I just get so frustrated :devil: from the lack of progress in treating cfs or other medical problems that I lose my patience sometimes.

    My DD was 16 when she first starting having life threatening episodes of anaphylaxis. The first time involved a call to 911 and an ambulance ride to the hospital. Followed by a second ride to the hospital because it happened again that same day.

    We were pretty sure it was from peanuts and at first she complied with her doctor's orders to avoid these. But then as all 16 year olds will she started testing her limits. She even went as far as to eat Reeses peanut butter cups in front of me to prove that she could. :aghhh: .. My little angel :angel: was tormenting me ...

    It turned out that she could eat peanuts from time to time without having a severe reaction but then out of the blue she'd have anaphylaxis to her lesser alllergens. Now she has to be hypervigilant about avoiding peanuts. Cross contaminination is getting her everytime.

    I'm not sure where my anaphylaxis is coming from at this point either. Vinegar is my only known trigger. Since I have so many allergens, there's no way I can stop taking meds and expect to breath.

    tc ... X
  4. xchocoholic

    xchocoholic Senior Member

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    Hi Dainty,

    Sorry if I upset you. I'm glad to hear this is helping you so much.

    I'm one of those who only believes what is tangible as far as treatments go. Concluding that a treatment works because of your lack of response to allergens imho, isn't tangible. I'm sure that Dr. Afrin, etc could explain this but not me.

    My DD's response to her allergens taught me that you can't always tell how your body is going to react. Actually, in the book "Healing the 4 A's" that doctor talked about this too. He had a patient die because she thought she'd be ok if she ate from a Chinese restaurant.

    I had a chiropractor tell me once that his treatments would change as soon as I stood up from the table and yet he continues to tell his patients that he's helping them. His treatments never helped me but because it was all I had available I kept going.

    tc ... x
  5. camas

    camas Senior Member

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    I like this idea. We have company coming tomorrow, so I may be awol for about a week, but will check in as soon as I have the energy.
  6. xchocoholic

    xchocoholic Senior Member

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    Hi,

    I've been busy all week too. And it's not over yet. So I'm not sure when I can get that new thread started. I want to give is some thought as far as format. We have this thread tho.

    My update for now is that I'm taking less than the 25 - 30 mg of Wal-Zyr a day I was but still taking 10 - 15 a day. And I'm using Children's chewables or liquid.

    For the last 12 years I've used the children's chewables successfully when my throat tickled but never consistenly. I only use 1/2 at a time and let it dissolve in the back of my mouth.

    I noticed 12 years ago that I was getting too sleepy from adult doses so I switched to this. For me, I need to let these dissolve slowly in my mouth to work. Since the dose is so low I repeat as necessary but typically 1/2 of one tablet works.

    I have a request in to my allergist to change my singulair from 10 mg to 4 or 5 mg children's chewable to avoid gluten and lactose. My doc thought it might help me get away from taking so much zyrtec. I've never taken singulair.

    This month, I switched to all natural laundry soap, dish soap (7th Generation), bath soap (Black African) and shampoo and "think" I feel better from doing this too. The 365 shampoo I was using made my scalp itch. And I'm trying to get rid of as much clutter as possible. This is where all my time went this month.

    I suspect the next few months / year will be spent modifying meds and lifestyle to accomodate my mast cell / allergy problems.

    tc ... X
    camas likes this.
  7. camas

    camas Senior Member

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    I'm checking back in, too. Had the nicest time with my boyfriend's little sis. A bit worn out from all the excitement as we rarely have company, but sure was a nice break from normal day-to-day stuff.

    I've added Vitamin K to my regimen. Mast cells use calcium to activate and degranulate and Vitamin K pulls calcium out of your blood and into your bones where it can cause less of a problem. Or so I read on a masto facebook group. I figure it won't hurt anyway.

    Speaking of bones, I've been back on NeuroProtek for the last week. Most masto patients are only taking a few pills a day. I initially went overboard with 8, but the pain in my shins and left thigh was so bad that I stopped. Even at just one pill a day, I'm still having some bone pain. I haven't received an answer on why this might be, so will have to ask again. Other than that, I'm having no side effects.

    I see by the scale this morning that I gained back a pound and half during my week of fun. So I'm back to counting calories. I want to lose a good 20 lbs since I read that mast cells like to live in adipose tissue, and I sure have plenty of that!
    xchocoholic likes this.
  8. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Good to hear you had a good visit. Like you, I enjoy company but it wears me out. Half way thru the visit
    I'm ready to take a break. Lol.

    I didn't realize that mast cells use calcium to activate an degranulate. It makes sense that they'd be using
    something up tho with all that activity. Good luck with the vitamn k. That's one I've never tried.

    I never found a calcium supplement I could use that didn't make my body feel stiff. I'm great with magnesium tho.

    Pain.. Hmmm .. I've been having more of that lately too. I stopped Allegra because it was causing headaches.
    And I backed off taking 10 mg mylan montelukast, singulair, yesterday because it was giving me headaches too.
    I just started children's chewable mylan montelukast last week so the connection was obvious. I had 5 mg yesterday and no headache today.

    I get internal pain (pelvic and bladder) from angiedema / swelling but I'm not sure where my joint / connective tissue pain is coming from now. I tried taking tylenol but only loratab fixes the problem. I wonder what's up here.
    The word prostaglandins keeps popping into my head but then my brain just goes blank. I know these are
    related to mast cells tho. Could this be a good sign ? Does it go away after awhile ?

    Good luck with your weight loss. I'm kinda working on this too. Avocados, nuts and seeds really put
    weight on me but I need the nutrients. Tc ... X
  9. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, Camas, just thinking out loud: Since high histamine might cause osteoporosis, and "Habitual flavonoid intakes are positively associated with bone mineral density in women"
    http://www.ncbi.nlm.nih.gov/pubmed?term="Habitual flavonoid intakes are positively associated with bone mineral density in women"

    then maybe the flavonoids in Neuroprotek are causing the bones to get denser, maybe very quickly in your particular case, which would be very good except that there's also the pain of the growing. Normally, pain means STOP! but in this case it might be worth putting up with it, at 1 pill every day or QOD. But it's worth checking up on that before proceeding, of course :)
    camas likes this.
  10. Sherlock

    Sherlock bicarb for exercise recovery and taming candida

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    Hi, X, that sounds like a sure signal to not take calcium --- especially since magnesium opposes calcium and your system seems to like more magnesium. You're not taking big doses of vitamin D, are you? Vit D has been pushed as the cure-all for everything on the planet, which is not true --- and more people are showing up with problems from too much vit D.

    Calcium rushing into muscle cells causes them to contract. Too much calcium can cause other problems, the worst of which might be calcification in arteries.
    xchocoholic likes this.
  11. xchocoholic

    xchocoholic Senior Member

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    Thanks sherlock,

    I don't take vit D because I couldn't buy into the belief that we should get this hormone from a pill. I try to get outside in the sun everyday. I've found that I really do feel better if I do this. Tc ... X
  12. xchocoholic

    xchocoholic Senior Member

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    I didn't realize the components of neuroprotek were flavonoids.

    http://lpi.oregonstate.edu/infocenter/phytochemicals/flavonoids/

    Flavonoids are a large family of compounds synthesized by plants that have a common chemical structure (1). The basic structure of a flavonoid is shown in figure 1. Flavonoids may be further divided into subclasses (see table 1). Over the past decade, scientists have become increasingly interested in the potential for various dietary flavonoids to explain some of the health benefits associated with fruit- and vegetable-rich diets. This article reviews the scientific evidence for the hypothesis that dietary flavonoids promote health and prevent disease in humans. For more detailed information on the health effects of isoflavones, a subclass of flavonoids with estrogenic activity, see the separate article on Soy Isoflavones. For more information on the health benefits of foods that are rich in flavonoids, see the separate articles on Fruits and Vegetables, Legumes, and Tea.
  13. camas

    camas Senior Member

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    Thanks for your thoughts, Sherlock. I put the question to Dr. Theo through his facebook fan page, and he hasn't heard of anyone else having this side effect from NeuroProtek. He thought it could be from increased activity translating as pain, but did recommend Calcical or a supplement with vitamin D and calcium. My thinking was along the line of yours since I've read that women taking drugs like Fosamax experience pain as their bones rebuild.

    Since I'm not having any other side effects, he recommended continuing the NeuroProtek and checking in again in a few weeks if I'm still having pain. How nice to have a response directly from the mast cell master!

    Since osteoporosis does go hand in hand with mast cell issues, I'm having a bone density scan this week to see where things stand.
  14. camas

    camas Senior Member

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    Hi X,

    It's a juggling act finding the right combination meds, isn't it? Sorry to hear about your pelvic pain. I have IC, so can empathize. Yes, prostaglandins are one of the things mast cells spill. Can you tolerate aspirin? While NSAIDs can lead to mast cell degranulation, doctors will sometimes still cautiously use aspirin in the treatment of mast cell disease to inhibit prostaglandin synthesis.

    Not a great deal to report on my end. I'm taking a break from testing things and just sticking with Zyrtec and NeuroProtek for now. The NeuroProtek (just 2-3 pills a day) is having a calming effect. I feel so relaxed and have been sleeping like a log. Now if only I could have some energy, too. But I'll take any improvement I can get.

    My vitamin D levels came back and are still terribly low despite using a vitamin D light three times a week. I can't tolerate the D3s -- they all make my immune system feel too hyped -- so I'm having to use the light for a longer period of time every day now. Sure hope that works. Wish we could have some of your Florida sunshine sent to Oregon. :)
    xchocoholic likes this.
  15. Ocean

    Ocean Senior Member

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    Do you have a link for the type of light you're using?
  16. xchocoholic

    xchocoholic Senior Member

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    Good to hear neuroprotek calms you. I wonder why. Are you eating the foods that contain flavanoids ?
    Neuroprotek contains so few considering how many there are.

    I never believed in taking vitamin / hormone D. I don't beleive the recommended levels are correct either.
    Because it's a hormone made inside our bodies, it's going to fluctuate.

    I found an article yesterday that supports what I've been thinking. The studies backing this according to the
    authors is full of holes. Just like most studies that back health protocals. I'll post it later.

    Meanwhile, I'm sure getting outside for an hour or two each day as long as you don't get burned is good for us.
    I'm pretty sure that the article covers this too.

    Tc .. X
  17. xchocoholic

    xchocoholic Senior Member

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    camas likes this.
  18. camas

    camas Senior Member

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    This is what my doctor recommended, although I don't know that I can endorse it since it's really expensive and hasn't done much for my levels.
    Ocean likes this.
  19. camas

    camas Senior Member

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    I have no idea why it calms me, although I believe the formula was originally developed for autism. I think most fruits and vegetables contain flavanoids don't they? Here's the data sheet on NeuroProtek, and I think there's a video on youtube, too. Dr. Theo uses the proceeds from the sales to fund further studies.

    Thanks for the info on Vitamin D. I'll go read it now!
  20. xchocoholic

    xchocoholic Senior Member

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    Hi camas,

    Here's my flavanoid link from above. The table in this article indicates that there are a lot of flavanoids. I keep
    hearing that using a variety of nutrient sources is the best way to go. I have no idea why dr t chose
    the ones he did.

    I have company arriving tomorrow so I've been trying to do some cleaning and resting in between. It's more like resting
    and cleaning in between. Lol... I'm really embarrassed that my apt is so dirty but I'll get over it.

    I had pre-seizure activity this afternoon and took Klonopin. For me it means my hypoglycemic feeling didn't resolve
    from eating something to bring my sugar levels up. I just feel more and more jittery. Klonopin always
    corrects it. It could be from singulair so I'm coming off of it slowly. I had 5 mg last nite and the nite before.
    I lowered it from 10 to 5 due to nonstop headaches. Fwiw, it could be from coming off singulair too.

    Tc ... X

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