August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Plasmapheresis -has anyone tried this treatment.

Discussion in 'General Treatment' started by Nickster, Oct 6, 2017.

  1. Nickster

    Nickster Senior Member

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    My son's doctor wants to refer him to a hemotologist to do plasmapheresis. Has anyone on this forum done this treatment? If so, what was your outcome?
    Ann
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    Here's everything I've researched in regards to CFS and plasmapheresis.
    • Plasmapheresis seems to have been used sparsely in the history of CFS treatment due to its cost, logistical requirements, and earlier research indicating an infectious cause.
    • It was used for CFS in the UK during the 1980s by Dr John Richardson. Patient Nasim Marie Jafrey details its use in her fictionalized memoir and Dr Charles Shepard has mentioned receiving it. Neither of them reported benefit, but they did not receive immunoadsorbtion
    • In 2016 Dr Carmen Scheibenbogen at Charite Hospital in Berlin used plasmapheresis (immunoadsorption) on 10 CFS patients. The study has not yet been published but a patient has posted on here that 7 had short term benefit, and 3 had long term benefit. Benefit appeared quickly.

      According to @Freddy's account the patients got immunoadsorption for 3 days, followed by a 2 day break, and then 3 more days, followed by 25g of IVIG.

      There's a good thread here about one of the patients' experiences

    • Here's an interesting presentation on immunoadsorption, and here's a paper. In a nutshell immunoadsorption seems to be safer and more effective than traditional plasmapheresis
    • I'm also in contact with two European doctors / researchers (not Fluge/Mella, cannot reveal who they are yet but I will in due time) who used a combination of plasmapheresis and rituximab on their POTS patients. They report remission in three patients with them returning to work.

      If you PM me I can share more details of their diagnostic testing and protocol.

    • There is a startup in Monterey called Ambrosia offering 2L infusions of "young blood" (human plasma from donors aged 16-25). It's a bit weird / dystopian, but they claim to have helped a woman with CFS recover from being bed-bound.
    • There is another startup Unity Biotechnology (backed by Amazon founder Jeff Bezos) working on blood filtering technology. They are still conducting trials on mice, but perhaps their techniques / technology could be of interest.
    • Here's a Facebook group of patients experiencing plasmapheresis (most for various autoimmune conditions). It's interesting to read, and they're great with answering questions.
     
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  3. Nickster

    Nickster Senior Member

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    That's a lot of information and I will look into these. Thank you for the information!
     
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  4. Jesse2233

    Jesse2233 Senior Member

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    No problem, I had my notes handy so I thought I'd share
     
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  5. Gemini

    Gemini Senior Member

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    @Jesse2233 very nice summary and update! :thumbsup:

    Quite helpful, thank you!
     
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  6. willg

    willg

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    These treatments cost ca $10k?
     

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