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Photopheresis to restore ME/CFS immune tolerance? (T-Cells / Immature DCs / Apoptotic leukocytes)

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Jesse2233, Nov 3, 2017.

  1. jaybee00

    jaybee00

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    Hi,

    This person did photophoresis (or maybe UBI) and said it was helpful...you have to look back to the very first blogs tho.

    chronicfatiguechronichope.blogspot.com
     
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  2. Jesse2233

    Jesse2233 Senior Member

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    @jaybee00 thank you sir, can’t seem to find the post where she mentions benefit but it does seem she used UBI over a long period of time
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Very interesting story by a woman ill over a decade with various autoimmune issues (with a likely infectious trigger). A consistent complaint is severe fatigue (exhausted showering etc). She reports moderate benefit from antibiotics, supplemental O2, and IVIG but seems to have a near total remission from photopheresis including complete resolution of her fatigue.

     
    Last edited: Nov 15, 2017
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  4. Jesse2233

    Jesse2233 Senior Member

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    Re-reading this study on photopheresis and autoimmunity (1). It gives an interesting overview of various clinical trials using photopheresis

    TL;DR seems to work well for Lupus, Scleroderma, Atopic dermatis, Epidermolysis bullosa acquisita. Has some benefit for rheumatoid arthritis. Doesn't seem to benefit multiple sclerosis
    --------------------
    • Scleroderma

      Pilot study - 100% (2 of 2) reported considerable benefit
      Multicenter RCT - 68% showed significant benefit

    • Lupus

      Pilot study - 70% (n=10) had significant clinical responses
      Several case studies with variable results

    • Atopic dermatis

      Retrospective review (n=105), 81 had positive response

    • Epidermolysis bullosa acquisita

      Several case studies (n=8) all patients had benefit

    • Rheumatoid arthritis

      Prospective study (n=7) 3 showed improvement
      2nd prospective study (n=7) all had improved labs, only 2 had lasting improvement

    • Multiple sclerosis

      Pilot study refractory MS (n=2) significant improvement in both patient's clinical status / quality of life
      Double blind placebo controlled trial of chronic progressive MS (n=8) no significant benefit
      Pilot studies on secondary progressive MS (n=9) no benefit

    • Type 1 diabetes

      Double blind study (n=19) decreased dependence on insulin
     
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  5. Jesse2233

    Jesse2233 Senior Member

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    I found an interesting patent that discusses the use of photopheresis for chronic intracellular infections: https://www.google.com/patents/CA2250919C?cl=en

    It gives the following explanation and viruses as examples.
    Later it mentions non-viral culprits that include Lyme (arthropod-borne bacteria) and mycoplasma
    It then address a potential mechanism of photopheresis to address said infections...
    It elaborates further...
    @Hip @halcyon does this patent pass theoretical muster? might the infusion of dead T-cells trigger an immune response that also addresses intracellular infections and viral particles?

    Some background on the patent inventors...

    Bruce C. Stouch has a Ph.D. in Biostatistics and Epidemiology and has worked for various biomedical firms. Interestingly he was listed as a co-author on the 2012 Ampligen trial in PLOSOne

    Susan McLaughlin, RN, BSN, CDE is now affiliated with The University of Chicago Medicine Kovler Diabetes Center.

    Jerome Zeldis, M.D., Ph.D. is the CMO of Sorrento Therapeutics an antibody-centric, clinical-stage biopharmaceutical company developing new treatments for cancer, pain management, inflammation and autoimmune diseases.

    The company THERAKOS is listed as an applicant on the patent. They are manufacturers of photopheresis devices. Obviously a photopheresis device manufacturer has financial incentive to broaden the use of their equipment to as many indications as possible, but the fact that the patent was granted means that at least the USPTO sees some merit in it.

    I will reach out to the inventors and see if they have any further theoretical or clinical insights to add
     
    Last edited: Nov 16, 2017
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  6. Hip

    Hip Senior Member

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    The company Therakos seem legit judging by their website, although note that patent offices don't generally concern themselves with whether an invention works or not; they just ensure that the patent contains enough instruction for the invention to be constructed or manufactured by an expert in the field ("those skilled in the art" as they say in patent-speak).

    I don't know enough to comment about how effective this treatment might be for eliminating viral infection from mononuclear cells, or indeed whether eliminating such infections would be helpful in ME/CFS, but is is possible it might (I did note in this thread that the three main viruses linked to ME/CFS are all able to infect B-cells, a type of mononuclear cell).
     
    Last edited: Nov 17, 2017
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  7. halcyon

    halcyon Senior Member

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    Perhaps it causes deletion of mature exhausted phenotype T cells and allows a fresh pool of naive T cells to expand that are more effective against the infection.
     
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  8. Jesse2233

    Jesse2233 Senior Member

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    Thanks @Hip @halcyon

    Any theoretical possibility it would get into tissues such as the heart and brain

    FWIW I called Dr Chia and asked him about photopheresis and chronic enteroviruses. He said he had no objections but wasn’t sure it would help.
     
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  9. Badpack

    Badpack

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    A study friend of mine is dermatologist and we talked about that treatment 2 years ago. I thought about doing it until i heard about the cost. Its around 2000€ per treatment and you need up to 50. Good luck finding someone who is willing to pay for this for a disease that for many ppl doesnt exist in the first place. There is no indication for a
    extracorporeal photopheresis for any disease at the moment. Its made on a case to case basis. If you really get someone to pay it i would say do it right away.
     
  10. Jesse2233

    Jesse2233 Senior Member

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    @Badpack agreed

    Did your dermatologist friend say anything interesting about the mechanism of action and how it might help?
     
  11. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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  12. Jesse2233

    Jesse2233 Senior Member

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  13. jaybee00

    jaybee00

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    WOW!!!!!!

    Never in a million years did I think insurance would approve.

    Good Luck. I’m optimistic.
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    Thank you!!!
     
    Last edited: Nov 29, 2017
  15. raghav

    raghav Senior Member

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    India
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  16. Jesse2233

    Jesse2233 Senior Member

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    A video testimonial from one of Dr Karima Hirani's ME/CFS + Lyme patients. She did quite a few treatments (Ozone, GcMAF, PEMF, Abx), but it seems UBI was a cornerstone of her improvement. She went from mostly bedbound to 80% functionality in 6 months after 3 years of illness

     
  17. Jesse2233

    Jesse2233 Senior Member

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    Some interesting UBI accounts. These are mainly Lyme patients, but again I wonder how much of this is actually killing pathogens vs restoring immune tolerence

     

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