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Case Study: Successful treatment of POTS and MCAS using LDN, IVIG and antibiotic treatment (1/11/18)

Discussion in 'Other Health News and Research' started by Jesse2233, Jan 16, 2018.

  1. Jesse2233

    Jesse2233 Senior Member

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    http://casereports.bmj.com/content/2018/bcr-2017-221405.full
     
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  2. ljimbo423

    ljimbo423 Senior Member

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    From the article-

    Although this is just one case study, it shows the importance of SIBO in treating these symptoms.

    After 10 years of struggling and trying many different protocols, I'm finally getting great relief in symptoms, consistently, by aggressively treating SIBO and leaky gut. I think a leaky gut can cause all kinds of immune system problems and symptoms with it.

    @Jesse2233 - It sounds like you are doing really well. I have read many of your posts and it seems to me that you are going to recover whatever it takes!!:thumbsup: I feel the same way about my recovery! Best of luck to you.

    Jim
     
  3. Jesse2233

    Jesse2233 Senior Member

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    What sort of improvements are you seeing?

    I got in touch with the woman from this arcade study. She’s the real deal, from what she told me...
     
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  4. ljimbo423

    ljimbo423 Senior Member

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    Energy level has about doubled and less PEM or no PEM with more physical activity.

    Chronic sinusitis symptoms, like runny nose and congestion have improved a lot and are much better controlled now with just nettle leaf extract and quercetin instead of antihistamines.

    Probably the biggest improvements I am seeing are just that I feel much better and happier. My quality of life has improved greatly!

    The flares I use to get that lasted 5-7 days, feeling like I had the flu, now only last 1- 1 1/2 days or less. I really can't think of any symptoms that haven't improved in the last 9 months of treating my gut.

    She must be one happy camper!:D What a great turn around.
     
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  5. wingate

    wingate

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    @Jesse2233

    This was an interesting case study. I was curious if you had shown it to the physicians you have been seeing for treatment.

    I would be interested to hear what they would have to say.
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    Haven’t had a chance yet, but I’m sure they’d be interested
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    From your article (Jesse)

    This is what we believe I have (an autoimmune neuromuscular disease plus POTS/MCAS). 99% of doctors would probably still give me a CFS label but it is just not quite right in my case even though great overlap. I wish there were more studies on the use of high dose IVIG for autoimmunity, POTS and MCAS but not hopeful it will happen any time soon b/c of the cost and b/c I guess not interesting enough for most doctors/researchers to study.
     
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  8. Freakyfriday

    Freakyfriday

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    I also find quercetin extremely helpful.
     
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  9. voner

    voner Senior Member

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    @Jesse2233,

    thanks for posting this. The paper said that the patient is a biostatistician! it seems that the criteria used for insurance approval of IVIG was delayed pressure urticaria, which seems to involve mast cell activation.

    here is a quote from the patient’s perspective,

     
    Last edited: Jan 23, 2018
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