International ME/CFS and FM Awareness Day Is On May 12, 2018
Thomas Hennessy, Jr., selected May 12th to be our international awareness day back in 1992. He knew that May 12th had also been the birthday of Florence Nightingale. She was the English army nurse who helped to found the Red Cross as well as the first school of nursing in the world.
Discuss the article on the Forums.

Looking for help regarding MCAS

Discussion in 'Mast Cell Disorders/Mastocytosis' started by nryanh94, Jun 30, 2018.

  1. nryanh94

    nryanh94

    Messages:
    72
    Likes:
    61
    Hi everyone,


    I recently had an appointment with Dr. Susan Levine in NYC and after reviewing my blood work in addition to active EBV and HHV6 she suspects that I have MCAS. Can anyone give me a quick run down of what MCAS is/ what are some options to treat it, I believe she is putting me on Cromolyn, and LDN but any other recommendations would be helpful.

    Also has anyone seen improvement in their overall condition by treating this, from my understanding their is a subset of patient who develop MCAS as well but Dr. Levine seemed to say it wasn’t that common.


    Thank you for any replies
     
  2. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,646
    Likes:
    4,567
    Pacific Northwest
    My ME/CFS specialist has many patients with MCAS. He tested me for the KIT mutation, but concluded mine is autoimmune as it is with most of his patients.

    My histamine and tryptase weren't high, but Chromagranin A and prostaglandin D2 have been more useful markers to watch. I also have autoimmune POTS, do you?

    Lawrence Aftlrin is the guru of MCAS. I've attached a couple of docs to give you more info.

    The strategy we are using is in the case study I've attached. I'm getting 1.5g/kg IVIG every 4 weeks to try to blast the autoimmunity, along with ketotifen, cromolyn, Zantac, quercetin and curcumin on a regular basis.

    Avoiding foods that set me off has helped, too. I react violently to corn products though it never popped up on a standard allergy test, so watching for it in meds and supplemrnts has been critical.

    My naturopath has helped by optimizing my methylation with folate, MB12, etc. and adding in pantethine (B5) to promote Acetyl CoA.

    Treating MCAS is important - it can really make a mess if out of control.
     

    Attached Files:

    ebethc likes this.
  3. nryanh94

    nryanh94

    Messages:
    72
    Likes:
    61
    Hi Learner,


    Thank you so much for the reply. I thankfully do not have POTS,and don’t believe I have auto immunity though I’m unsure of that. I still have to discuss my further bloodwork with Dr. Levine. I do have high Histamine levels which is what lead her to believe I could have MCAS

    I also had elevated immunoglobulin E
     
  4. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,646
    Likes:
    4,567
    Pacific Northwest
    That sounds like allergies. So does high histamine.

    Have you been tested for environmental allergies or food allergies? The more you can figure out your triggers and reduce reactivity and inflammation, the better off you'll be.
     
  5. nryanh94

    nryanh94

    Messages:
    72
    Likes:
    61
    I’ve been tested for a few things/ never for food allergies.

    I’m allergic to pollen, different trees, mold, cockroaches dust mites, dogs, cats, horses. We have a dog in our house that I could never consider getting rid of with how much she means to us, add in she is my wife’s emotional support dog (I like to think she does the same for me). I have an air purifier in home to take care of that.


    I wonder if something like Xolair would help me since I have such IgE levels
     
  6. Learner1

    Learner1 Forum Support Assistant

    Messages:
    2,646
    Likes:
    4,567
    Pacific Northwest
    Removing as many triggers is best, particularly if you have a serious illness. The drugs should come in only after you've done as much as you can.

    I found my seasonal allergies greatly improved after I learned I was celiac, allergic to milk, eggs, and corn, and fixed nutrient deficiencies due to gut malabsorption.

    A lot of people have food allergies and don't realize it. Cyrex Labs has some good tests. The Food Intolerance Bible by Anthony Hayne is a good resource, too.
     
  7. kangaSue

    kangaSue Senior Member

    Messages:
    1,006
    Likes:
    1,155
    Brisbane, Australia
    Depending on what sort of symptoms you are getting, be aware that there is a mast cell condition restricted to just the GI tract that most GI's aren't even aware of and has been seen to occur in some cases of IBS. It's called Mastocytic Enterocolitis (or Allergic Mastocytic Gastroenteritis and Colitis) and can involve having a lot of food sensitivities.
    https://rarediseases.info.nih.gov/diseases/10176/mastocytic-enterocolitis
    https://www.ncbi.nlm.nih.gov/pubmed/16519565
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3346686/
     
    Learner1 and Thinktank like this.
  8. ebethc

    ebethc Senior Member

    Messages:
    1,458
    Likes:
    1,092
    @nryanh94 .. fyi, corn is in everything... I finally figured out that i had to take non-corn vitamin c (most vitamin c is derived from corn..)... the one I take is from tapioca (ecological formulas, on amazon)... vitamin c helps break down histamine... vitamin c is on the afrin drug list

    also, culturelle (l rhamnosus) is helpful for inflammation, and blocks H4 receptors

    quercetin is a good mast cell inhibitor (ketotifen makes me go to sleep, even in small doses)
     
    Learner1 likes this.
  9. Thinktank

    Thinktank Senior Member

    Messages:
    1,402
    Likes:
    1,615
    Europe
    To complicate it even further, environmental allergies may cause cross-reaction with food products. For example, if you are allergic to birch pollen then you may also react allergic to certain foods like apples.
     
    Sherlock and Learner1 like this.
  10. ahmo

    ahmo Senior Member

    Messages:
    4,438
    Likes:
    6,792
    Northcoast NSW, Australia
    Sherlock likes this.
  11. Sherlock

    Sherlock Boswellia for lungs and MC stabllizing

    Messages:
    1,278
    Likes:
    759
    Boswellia, USA
    Here is Theoharides saying that for some of his patients with Mastocytosis for whom nothing else worked (not flavonoids nor cromolyn), Xolair helps. To my mind, Theo has the most knowledge of all (he is published in the NEJM), though he is not the most polished speaker. At around 1:37:30 :


     

See more popular forum discussions.

Share This Page