1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
ME/CFS and Beating the Clock
For Jody Smith, the ticking of a clock was enough at one time to chase her back to her bed. But with the passage of time, she has been able to reclaim her living room ...
Discuss the article on the Forums.

Allergy / Mast cell treatments

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

  1. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    Yep. I'm much better at pacing then I used to be, but when I get any energy I have a hard time not using it all!

    Systemic mastocytosis can cause osteoporosis. That's why I'd like to get a scan if this test comes back positive. I see that the drugs used for osteoporosis can cause bone pain, so total conjecture on my part is that NeuroProtek is stabilizing the mast cells in my marrow allowing room for more new bone growth. How's that for a positive spin? :)

    I don't know if I'll pursue further tests. I'm not too keen on the idea of stomach, bowel, or, particularly, a bone marrow biopsy (yikes) to prove that it is systemic. Guess I'll cross that bridge when, and if, I come to it.
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,506
    Likes:
    1,121
    Florida
    Hi camas,

    I hope you're negative fir mastocytosis. Fwiw, I know you've been tested but osteoporosis is common with celiacs too.

    I'm having a Paget's flare so I'll be back. Before I forgot tho I wanted to share that Walitin
    has lactose monohydrate. My Paget's flares from lactose so I figured this out the hard way. (my specialty)
    One would
    think if Paget's was related to mast cells, the antihistamine would stop the reaction. Nope .. So maybe
    there's lactoferrin in this pill too ?

    The upside is that at least I know this. I'll watch my meds and supplements closer.

    G nite .. X
  3. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    So sorry to hear you are having a flare from the Walitin. I'd never heard of Paget's. It sure would make it easier if there was some connection to mast cell issues so that you would know you are just treating one thing. That's why I wouldn't mind testing positive for mastocytosis because it fits my symptoms so well, and I could jettison the diagnoses of ME/CFS, FM, IC, and OI that I've been given over the last 30 years and for the first time have some real focus for my treatment.
  4. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,506
    Likes:
    1,121
    Florida
    I'd never heard of Paget's either until about 4 years ago when I noticed that my headaches weren't
    just headaches and that my skull was actually growing. It grows in spurts and it forms lumps and/or ridges where it grows. I have a visible ridge on my forehead now. According to
    my eye doctor, it's probably affecting the vision in my right eye now.

    I was really upset at first but now that I've had it for awhile I don't think it grows unless I eat dairy / lactoferrin. I'm not sure if all lactose has lactoferrin. I googed lactoferrin paget's and found the connection. I'd already noticed that my flares were connected to dairy tho. Dairy probiotics esp
    Kefir are the worst.

    They talk about peole with cfs having headaches but no one mentions this could be why. Duh ! I just thought
    it was a cfs symptom. BUT, I took diamox for brain swelling for the first few years of my cfs and I think it helped.

    My cat scan last year confirmed Paget's.

    I sure hope this mast cell treatment stops it or at least slows it down. The flares are extremely painful and can
    cause hearing loss too. I had to take Loratab last night and it's still sore today.

    Great point about getting officially diagnosed. It might help others if the dots were connected.

    Tc .. X
  5. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    380
    Virginia, USA
    Tea contains benzoic acid, a known mast cell degranulator. And chocolate/cocoa is high in histidine, precursor to histamine. Chocolate may also contribute to mast cell degranulation. In my case, I must say that NeuroProtek has done nothing for my stomach, it's effects being felt almost exclusively in the brain fog/fatigue realms.
    xchocoholic likes this.
  6. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    I'm so sorry, X. That sounds really miserable. That was good detective work on your part figuring out what was triggering it. I sure hope mast cell treatment will also help you.
    xchocoholic likes this.
  7. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    Thanks, nanonug, for more detail on why these appear on high histamine food lists. Are you having any side effects from NeuroProtek? Care to conjecture on why I might suddenly be having bone pain?
  8. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    380
    Virginia, USA
    I don't think that I am, no.

    The answer to your question is, I have no idea. However, how do you know it's bone pain?
  9. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    Good question. It's an aching inside my shins. There's no pain to the touch on the outside. Feels like the aching I had after a couple of breaks (hand and jaw) when I was young.
  10. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,506
    Likes:
    1,121
    Florida
    Hi camas,

    Are you taking a good chelated mineral ? I get pain when I forget to take these. I've used Enzymatica
    and Solgar. Both are gf.

    I'm doing really well still but I'm working out the kinks of being upright and active more. I need to eat more food and
    meat in particular. And I need to treat my exercise induced petite mals with food then if needed Klonopin.
    So far I'm needing 1/2 - 1 .125 mg Klonopin throughout the day for seizures.

    It feels great to be out tho. So fsr, I'm not getting much pem either. Kow. I guess dr peckerman was right about
    hypoperfusion leading to pem.

    So it looks like allergies lead to vasodialation. Vasodialation leads to hypoperfusion. Hypoperfusion leads to orthostatic intolerance (in my case pots, petite mals, sob ) and triggers pem.

    Tc .. X

    Ps. I have to take Wal-zyr throughout the day. I'm using 25 - 30 mg a day plus 1 tbsp Benadryl at night.
  11. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    Hi X,

    So glad to hear you are continuing to do well on the zyrtec and benadryl! I'm using 10mg of zyrtec at night and if I get itchy at all during the day, take a little bit more. I'm such a wimp. lol

    No, I'm not taking a chelated mineral supplement -- just lots of magnesium. My bone pain went away completely when I stopped the NeuroProtek. Not sure what to make of that. I actually feel better off of it -- less logy. I'm thinking of trying a bottle of the low phenol version to see if I tolerate it better.

    My skin biopsy results finally came back today and they are inconclusive. Story of my life. Will see the dermatologist on Monday to discuss them. He was so positive I had tmep. I did read after the fact that you aren't supposed to use epinephrine along with the lidocaine in either skin or bone biopsies because it can cause the mast cells to degranulate before they get to the lab. He did mention that the shots had epinephrine, so maybe I can talk him into a second biopsy without it. I'm sure he'll just love me telling him how to do his job. lol
  12. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,506
    Likes:
    1,121
    Florida
    Hi camas,

    Why aren't you taking more Zyrtec ? I figured out that I needed it throughout the day by
    watching my reaction to it when I was feeling weak and like I needed to lay down. Are you
    feelin this way during the day. I was to the point in my protocal where oi (pots, sob and petite mals) and pem were the
    only symptoms keeping me couchbound. I stopped feeling crappy 24/7 several years ago.

    If it just makes you uncomfortable taking more, you could try taking more children's. Reading the
    stories on that mast cell forum helped me get more comfortable with taking more too.

    I'm not as interested in getting a proper diagnosis as you are but I'm having a great time right now.
    Tc ... X
  13. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    It's not supposed to be sedating, but that's the effect zyrtec has on me. So I've had to take it slow. Over many months I've worked up from 1/4 to 1 teaspoon (10mg) at night, and can get away with another 1/4 of a teaspoon during the day if I get itchy. If it's helped my weakness, OI, shortness of breath, or fatigue, it's done so gradually and I just haven't noticed. Mostly I've noticed that I'm just less allergic, itchy, and have less edema in the morning.

    I'm doing surprisingly well without tea and chocolate (finally stuck with it). My stomach isn't hurting and, oddly enough, I don't seem to be missing the caffeine.
  14. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    I've been experimenting with the children's generic zyrtec too and I get the same sleepiness, camas. And not sure if it helped anything or not.
    camas likes this.
  15. nanonug

    nanonug Senior Member

    Messages:
    1,248
    Likes:
    380
    Virginia, USA
    Zyrtec is the most sedating of the non-sedating. I cannot take it for this very reason. I now take Allegra (fexofenadine), 180mg twice a day.
    camas likes this.
  16. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,506
    Likes:
    1,121
    Florida
    Camas,

    Can you determine what you're reacting to ? The Wahls diet should help. I'm totally
    hooked on raw foods now. Most cooked veggies or fruits are tasteless and do nothing for my energy.

    I'm taking Walgreens zyretec which has corn starch in it so that's probably why it's not making me sleepy.
    I know hfcs super energizes me. And someone on this thread said that corn starch is being used as an energy
    enhancer.

    Have y'all tried that one ? The name brand zyrtec makes me tired too.

    180 mg Allegra knocked me out and 90 mg made me drowsy. I'm trying to take 45 mg when I remember it.

    Tc ...x
  17. CJB

    CJB Senior Member

    Messages:
    743
    Likes:
    387
    Oregon
    Well, now I don't know what to think. Yesterday I was sleepy all day after taking the zyrtec children's in the morning, but about 9pm (roughly 12 hrs after taking it), I felt amazingly well. We went to the grocery store at 10pm.:eek: UNHEARD of. Sorry to yell, but seriously, this is unheard of. Unfortunately, normal sleep meds didn't work and I didn't sleep well, but I feel okay this morning anyway.

    Last night at the grocery store I picked up children's allegra, some pepcid and some zantac and I'm sitting here trying to figure out what to take. I'll let you know..........:nerd:
    xchocoholic and camas like this.
  18. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    That's great news, CJ. Please let us know how your experimenting goes.

    X, I usually judge my food allergies by what makes by throat swell or makes me flushed and itchy. I noticed that all of my known allergies were on the high histamine list, so thought I'd slowly start eliminating other high histamine foods. Will be easier now that berry and cherry season is coming to a close... The best I've ever felt was when I was doing an UltraClear fast years ago, but one has to eat real food eventually.
    CJB likes this.
  19. liquid sky

    liquid sky Senior Member

    Messages:
    344
    Likes:
    151
    Could someone point me to a good list of high histamine foods? I've seen a couple and they seemed to contradict one another?
  20. camas

    camas Senior Member

    Messages:
    698
    Likes:
    195
    Oregon
    I don't know how accurate it is, but this is the list I'm using: http://www.chronichives.com/pages/lowhistamine.htm
    liquid sky and merylg like this.

See more popular forum discussions.

Share This Page