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Successful treatment of POTS and MCAS using LDN, IVIG and antibiotic treatment

Discussion in 'Problems Standing: Orthostatic Intolerance; POTS' started by Learner1, Feb 10, 2018.

  1. Learner1

    Learner1 Forum Support Assistant

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    This case study, published in December, discusses a patient who's seen many doctors before finally being diagnosed with MCAS and POTS and being put on this protocol:

     

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  2. aaron_c

    aaron_c Senior Member

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    I saw this. As I read through it though it became apparent that IVIG was the important piece. Here is the outcome:

    After 10 IVIg treatments, a previously scheduled appointment at Mayo Clinic Scottsdale included autonomic testing which showed resolution of tachycardia with head-up tilt along with improvement in sudomotor function. At the time of submission of this report, the patient has had 20 IVIg treatments with a maximum of 5 weeks without one because the effects start to wear off.​

    It's great that this is working. Unfortunately, IVIG is an expensive treatment at $10,000-$30,000 per dose before insurance, and having to do that every 5 weeks will be financially taxing no matter who pays for it.
     
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  3. Learner1

    Learner1 Forum Support Assistant

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    My insurance is covering it, at $5,000 a dose every 3 weeks. My ME/CFS doctor prescribed it.

    I have MCAS, POTS, and adrenergic and muscarinic antibodies, and I've been on a similar protocol and it has helped me. I was able to ski for 5 hours yesterday for the first time in 3 years with no PEM today. I still have a ways to go to be normal and my doctor wants to double my IVIG dose and increase my MCAS meds to get further ahead.
     
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  4. Murph

    Murph :)

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    case history and treatment seem very similar to @Gingergrrl !!

    (if the hospital in question were in LA not Arizona i'd feel the thing was a terrible breach of privacy!)
     
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  5. Gingergrrl

    Gingergrrl Senior Member

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    It's not me and I never had SIBO. I also did not tolerate LDN when I tried it in 2014. But I do believe there will come a day (hopefully in my lifetime) that IVIG will become a standard treatment for POTS & MCAS, especially for those with solid proof of autoimmunity.
     
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  6. ebethc

    ebethc Senior Member

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    what MCAS meds do you take?
     
  7. Strawberry

    Strawberry Senior Member

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    WOW! Congratulations on the improvements! Hope you can get a few more runs before the end of the season!
     
  8. Learner1

    Learner1 Forum Support Assistant

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    Doubtful. That was a special occasion for sure..I am seeing glimmerings of normal, on the good days, though. There are still couch days, too.:sleep:
     
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  9. Learner1

    Learner1 Forum Support Assistant

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    Ketotifen, Benadryl, Zantac, Boswellia, Curcumin, Quercetin, and vitamins C, B5, folate & B12.
     
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