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Mast Cell Issuers new page on PoTs UK

Discussion in 'General ME/CFS Discussion' started by Complex CFSer, Oct 13, 2017.

  1. Complex CFSer

    Complex CFSer

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    http://www.potsuk.org/mcas

    I have so many of these symptoms it's untrue and have always had dermographia. Funnily enough I take long term hay fever tablets every day which would appear to have been helping the symtpoms without me knowing.

    (sorry for the typo in the header, edit doesn't allow correcting it!)
     
    justy, Learner1, Orla and 1 other person like this.
  2. ryan31337

    ryan31337 Senior Member

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    South East, England
    Hi @Complex CFSer,

    I know of one or two other active users that control their POTS symptoms much better with daily H1 blockers. I take cetirizine 10ml, twice a day.

    Ryan
     
    SamanthaJ likes this.
  3. Complex CFSer

    Complex CFSer

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    Hi ryan31337, is H1 blocker a beta blocker?
     
  4. ryan31337

    ryan31337 Senior Member

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    South East, England
    Hi,

    No, an antihistamine.

    Antihistamines block either H1 or H2 receptors. You can get both types over the counter, I.e. cetirizine and ranitidine respectfully.

    Ryan
     
  5. Complex CFSer

    Complex CFSer

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    Ah. Same as what I take then!
     
  6. ahmo

    ahmo Senior Member

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    Northcoast NSW, Australia
    I found the link to POTS/ MC a couple years ago. I consider myself having 'POTS-lite'. In fact, I'm not having symptoms now. I take royal jelly daily, twice if I'm having MC symptoms. Also mangosteen when I have symptoms. And rutin (non-citrus origin) does me for histamine reactions.
     
  7. Learner1

    Learner1 Professional Patient

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    There is a route to take a lot of drugs, but there are many natural substances that will work.
    • Increasing methylation with 5-MTHF, MB12, and cofactors
    • Helping NAT2 with lots of B5
    • Vitamin C
    • Curcumin
    • Quercetin, rutin, luteolin
    • Boswellia
    And then, there's Gleevec.
     
    Last edited: Nov 2, 2017
  8. Complex CFSer

    Complex CFSer

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    Do you mean all those are equivalent to anti-histamines Learner1?
     
  9. Learner1

    Learner1 Professional Patient

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    That's what my naturopathic doctors think.

    I'd had all kinds of allergy symptoms for years, was on fexofenadine, ketotifen, cromolyn, benadryl, asthma inhaler, etc.
    Then started naturopathic treatment 8 years ago. I did LDA, but other than that, after avoiding my food allergens, my allergy symptoms were 95% gone on the nutrient protocol my ND had me on.

    I was surprised recently after my ME/CFS doctor, who'd gone through my history, diagnosed me with MCAS. Histamine and tryptase have been normal for the past 3 years, but I had elevated prostaglandin D2 and Chromagranin A. My inflammation symptoms had flared after I started IVIG recently.

    I told my ND the bad news, puzzled over my lack of symptoms. He said, "That's part of why we've had you on so robust a methylation protocol and vitamin C. You're taking curcumin and boswellia for the flare, and we also need to bump up your B5 to about 6g per day as your NAT2 pathway can go faster to get rid of the histamine, etc. than methylation can."

    My ME/CFS doctor is dubious as I am about all the standard MCAS meds as most contain my allergens, corn and milk, and would be expensive to compound all of them.

    He's recommending we look at Gleevec, in the future, which Dr. Afrin and he have been having good results with. It costs an arm and a leg, though. He also has patients on folate, B12, and Neuroprotek, which contains quercetin, rutin, and luteolin.

    I'm not sure what the right answer is, but many of the natural things are mentioned in the attached.
     

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