Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

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. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    My immunologist has recommended a treatment called photopheresis as a way to potentially reset T cells, and decrease proinflammatory cytokines / autoantibodies / chronic pathogens. As far as I can tell this type of treatment has not yet been used in ME/CFS, and is just beginning to be used in autoimmunity.

    It has been lightly discussed once before on PR here
    -----------

    Photopheresis is a process where:
    1. Blood is taken from the body via a peripheral catheter
    2. White blood cells (WBCs) and platelets are separated from whole blood
    3. WBCs are treated with a photosensitizing agent called 8-methoxypsoralen
    4. WBCs are subsequently irradiated with ultraviolet wavelengths of light
    5. The treated WBCs, platelets and whole blood are returned to the patient via a second peripheral catheter
    Treatments are done bi-weekly for up to six months on an outpatient basis. Side effects include transient drop in blood pressure, light sensitivity, and transient tiredness.

    It is most commonly used in certain cancers and organ transplant, although it is becoming more common for autoimmune illness. (1)

    -----------

    Ideally photopheresis promotes a long lasting "immune reset" or restoration of immune tolerance w/ more permanent effects than plasmapheresis / plasma exchange and without the immunosuppression of treatments such as rituximab, cyclophosphamide, or steroids.

    Immune tolerance is explained below

    Photopheresis' hypothetical method of action:

    upload_2017-11-3_20-28-49.png

    I thought the T-cell mechanism of action was especially interesting given Mark Davis' findings, the latest UK study on metabolically impaired white blood cells, and what Dr Chia told me last appointment about Dr Klimas' successful T-cell treatment experiment.

    -----------

    Note: Photopheresis is distinct from ultraviolet blood irradiation (UBI) which is sometimes prescribed by naturopaths and LLMDS and has been used by some ME/CFS patients with mixed results. UBI does not involve separating white blood cells or treating them with 8-methoxypsoralen. The blood volumes treated in UBI seems to also be less. Sometimes UBI is called photopheresis by naturopaths / LLMDS but it is technically distinct.

    That said, the fact that UBI is sometimes effective for ME/CFS and Lyme makes me wonder if photopheresis has even greater potential.

    Photopheresis seems to be more firmly under the auspices of mainstream, allopathic medicine and is used by major hospitals and by researcher immunologists / oncologists. UBI seems to be more commonly associated with alternative and integrative medicine perhaps because of its lower cost and requirement for fewer speciality personnel and less expensive equipment.

    I understand that PR member @Wayne underwent UBI (it seems it was referred to as photopheresis) with positive effect. Any comments from him or other UBI experienced patients would be much appreciated!

    -----------

    My concern with photopheresis (and UBI) is the unknown potential for cancer (UV light can cause genetic mutations and 8-methoxypsoralen is a known carcinogen). However I can find no literature linking photopheresis to long term cancer incidence, and it could potentially be preventative of cancer by restoring immune functionality.
     
    Last edited: Nov 4, 2017
    Mary, ivorin, Aroa and 4 others like this.
  2. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Some of the barriers to photopheresis treatment are discussed here:
     
    ivorin likes this.
  3. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    An interesting UBI anecdotal story from a Lyme patient:
    This patient reports profound benefits from UBI. Note however that this comes from a commerical testimonial so should be taken with a grain of salt:

    And @Wayne's perivously mentioned experience:
     
    Last edited: Nov 3, 2017
    ivorin and echobravo like this.
  4. dreampop

    dreampop Senior Member

    Messages:
    202
    Likes:
    503
    Can you elaborate on what the treatment was, and the results?
     
  5. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Sure, from my Dr Chia questions thread:
    It's not a perfect analogue of ECP or UBI, but it does involve extracorporeal T-cell augmentation and a positive, albeit transient, treatment outcome
     
    Mary, ivorin and Murph like this.
  6. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Here's a fascinating paper on the treatment of a Lyme patient (ill for 5 years) with photopheresis and his subsequent full recovery. It appeared in the 1994 edition of the Journal of the American Academy of Dermatology.

    Reported by Drs Jean P. Randazzo, MD,a, c Francis X. DiSpaltro, MD,a, b, c Carolyn Cottrill, MD,c Albert S. Klainer, MD,a, cAllen C. Steere, MD,d and Emil Bisaccia, MD

     
    Last edited: Nov 3, 2017
    Mary likes this.
  7. Murph

    Murph :)

    Messages:
    495
    Likes:
    2,532
    To my eye this looks like a medium risk/high cost sort of therapy. Not high cost/ high risk like say cyclo, and not low risk/high cost like Mhbot, and not low risk /low cost like guzzling vitamin d tablets.

    Everyone makes their own determination of where their tolerance lies for risk and I can't question anybody's decision.

    This one seems it might be theoretically sound but has little evidence in place. Why do you think the doctor feels it will work?
     
  8. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    I think that's a good risk assement @Murph

    My immunologist has a lot of experience with IVIG, and he was hoping it would get me all the way there. He liked IVIG because it has anti-pathogenic as well as anti-inflammatory properties without causing immunosuppression

    He didn't say this explicitly so it's my guess... but I think...

    1. He wants to help in whatever way he can

    2. He is conservative about risk and doesn't want to try steroids, rituximab, or rapamycin (all of which we've discussed) due to their immunosuppression and the possibility that I may have a chronic infection in addition to autoimmunity / autoinflammation

    3. He thinks plasmapheresis / plasma exchange / immunoadsorbtion will be too short acting and may not address the root cause

    4. He is dubious that antibiotics or antivirals will be enough to address underlying immune dysfunction

    5. He has a good relationship with the apheresis unit at his hospital and believes in the underlying theoretical basis of photopheresis
     
    Mary, mariovitali, MastBCrazy and 4 others like this.
  9. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,193
    USA
    Hey Jesse, How did your doc specifically compare photopheresis to Rituximab? Has he treated patients w/Ritux where they got infections (outside of the rare risk of PML)? I was just curious. Please let us know if you decide to try it and I don't know anyone else who has done this treatment and am very curious!
     
    Learner1 and Jesse2233 like this.
  10. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Yes I definitely will!

    If I can get insurance to cover photopheresis I'm 90% sure I'll try it. If insurance says no, I may look into UBI at a reputable clinic

    He said that rituximab is generally safe and didn't rule it out for me. For whatever reason though he likes photopheresis better. I'm not sure exactly why. I think in part because he uses it with success in some of his transplant patients.

    His basic thought process seems to be... how can we avoid immunosuppression while still modulating the immune system in a powerful way that's potentially long lasting? In his mind IVIG fits that model as does photopheresis
     
    merylg, ivorin and Gingergrrl like this.
  11. Learner1

    Learner1 Professional Patient

    Messages:
    1,080
    Likes:
    1,732
    Pacific Northwest
    @Jesse2233 I've done multiple UBI treatments along with high dose vitamin C and IV artesunate.

    My ND did it. He has a practice with many integrative oncology patients and though he's very careful, does not seem concerned about its causing cancer. He also is beginning to do 10 Pass ozone with Lyme and other chronic infection patients.

    My experience with the UBI was good. I felt great after each treatment and it helped fight the bugs. However, it was not enough to fix my extremely dysfunctional immune system or get rid of any infection I have. I believe it would help someone with a milder illness.

    Interesting about photopheresis. Did you discuss it or UBI with Dr. Chedda? Who would it help and when, considering other possible treatments?
     
    Mary, ivorin and Jesse2233 like this.
  12. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    9,379
    Likes:
    24,193
    USA
    Thanks and that is really interesting.

    I was curious about this, too. Both what Dr. Chheda thinks of it and who would be the ideal candidate (as far as their symptoms and other treatments).
     
    Learner1 and Jesse2233 like this.
  13. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Interesting @Learner1. How many UBI sessions did you have and what kind of effects did you notice?

    My personal hunch is that 10-pass ozone therapy works in a similar way to photopheresis and UBI by deactivating cells and sending a rebalancing signal to the immune system. But ozone may go further by promoting endogenous antioxidant production through oxidative stress. I'm a bit dubious that it can directly kill enough pathogens to have an effect but hey it could be possible. That reminds me, there's a hepatitis C paper on photopheresis I read that I should post... (I suspect the MoA for both treatments is rebalancing innate immunity to clear longstanding infections)

    Interestingly Dr Chheda told me that if she was a patient one of the main treatments she would try is ozone therapy. She said she's heard a lot of anecdotal benefit from her patients about it and gave me the names of some researchers to look into. I haven't discussed photopheresis with her yet. She's keen to have me try a short term antibiotic cocktail, and since I'm starting to feel better with mHBOT I'm debating if I want to take the risk of further microbiome damage. I imagine she'd be open to learning more about photopheresis given her increasing interest in plasmapheresis.

    Also, I corresponded with a local amino acid specialist who said "ozone therapy is crazy good" and had an ME/CFS patient of his go from severely disabled to acting again in her theater troupe after several intensive ozone rounds in Vacouver. He floated the idea of traveling to Mexico or Thailand for less expensive treatment, but I wasn't quite ready for that
     
    Last edited: Nov 4, 2017
    Mary, Learner1 and Gingergrrl like this.
  14. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    So there are two papers of interest on photopheresis and Hep C that have interesting implications for its role in chronic infections.

    The first is from 1999 treating 15 patients with a combo of photopheresis and interferon-alpha, and both treatments alone for 24 weeks. The combo had the best results (clearance of viral RNA), although all patients relapsed sometime after discontinuing treatment. The author posits that longer treatment could completely clear the infection.
    The second paper is a case study from 2017. The hep C patient developed GVHD after a liver transplant and failed immunosuppressive therapies. He was treated with photopheresis and had a dramatic positive response. My understanding is that the photopheresis did not directly treat the Hep C, but instead amerliorated his aberrant immune response to the transplant.

    I wonder if a combo protocol of interferon-alpha and photopheresis could be used to treat chronic enterovirus infections (interferon acting as a direct antiviral and photopheresis helping normalize t-cell function, and reducing associated proinflammatory side effects and potentially autoimmunity). @Hip @halcyon any thoughts?
     
    Last edited: Nov 4, 2017
    ivorin and Learner1 like this.
  15. Learner1

    Learner1 Professional Patient

    Messages:
    1,080
    Likes:
    1,732
    Pacific Northwest
    Here is a paper that discusses the mechanisms of UBI and compares it to ECP:

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4783265/

    I did about 8, about 2 weeks apart. I felt the sense of wellness I feel after HBOT, clearer head, and more energy for a couple of days.

    Perhaps I didn't do enough of it.

    I had tried contacting a couple of clinics to ask more about how 10 Pass worked, but they weren't very forthcoming. It's described here:

    http://thepowerofozone.com/ozone-high-dose-10-pass/

    Here is a blog entry that describes the effects of ozone in infections, with references:

    http://thepowerofozone.com/does-ozone-kill-ebola/

    I also found a Lymie blogging about his experience with 10 pass and discussed it with him over the phone. He said he'd done several sessions 2 years ago and it was the most effective thing he's tried. Unfortunately, after his symptoms returned 18 months later, he learned that it was necessary to go back ever 2-3 months for a boost.
    So, I'm at the point of intensifying my antibiotic treatment.

    I've watched as my ND has brought the 10 pass machine in. He waited for a colleague to get one and see if it was effective before committing. He trained with Dr. Rowen and has been using all modalities of ozone for about 3 years. He and the staff trained on it, and he said they did it on him (and the staff told me about it, too) and he had boundless energy for 3 days. But he's a healthy 34 year old.

    Another patient with chronic Lyme is the first one to do it. He hasn't told me I should do it, and I know the protocol is something like 15 treatments at around $800 each, so its a big $$ commitment, so I've been waiting to see what he says.

    I didn't think to discuss with Dr K. I'm rethinking this though... go for 3 strong and IV 3 days a week for the foreseeable future or go for the 10 Pass? I just wish I knew more about whether they'd be effecrive against chlamydia pneumoniae which is a weird bug.
    Well there's a ringing endorsement! Ill try anything that's "crazy good" :rofl:

    I know of 3 reputable clinics for 10 pass. It needs to be done over time, so you might be spending a couple of months in Thailand...
     
  16. Learner1

    Learner1 Professional Patient

    Messages:
    1,080
    Likes:
    1,732
    Pacific Northwest
    The paper I posted comparing UBI to ECP says ECP can be immunosuppressive.
     
    Jesse2233 likes this.
  17. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Great find!

    That's certainly promising. I wonder if the effects are cumulative (like in HBOT).

    10 pass every 2 months isn't such a bad proposition if it keeps you functional until there's a better treatment. It only takes an hour or so right?

    Is there anything about CpN that would make it less susceptible to 10 Pass? Might be worth a trial to see how you fare

    Are any of those in Southern California?
     
  18. Learner1

    Learner1 Professional Patient

    Messages:
    1,080
    Likes:
    1,732
    Pacific Northwest
    Why wouldn't they be?
    That's after the initial intense 3 weeks. Right, not a bad proposition. Sure sounds more appealing than some of the drugs you're surfacing...;)

    A couple of hours.
    Its acellular and has a multiphase life cycle. I haven't seen anything definitive that it DOES treat it.

    Yes, that's what I'm thinking.
    Yes. But not in LA. PM me.
     
  19. Jesse2233

    Jesse2233 Senior Member

    Messages:
    1,592
    Likes:
    3,950
    Southern California
    Fair.

    To play devil's advocate, maybe after a point the benefits plateau and fail to fully address the underlying issue. That's not to say benefits wouldn't be cumulative up to that point, if such a point exists.

    I'm intrigued that ozone gave additional energy to a fully healthy person who presumably had no autoimmunity or chronic infections, at least not to the point of causing disease. Does that imply that ME/CFS is truly a spectrum illness with the mildest state bleeding into "feeling slightly tired", that ozone has some sort of metabolic enhancing mechanism that can work well for anyone, or maybe both?

    Hahah, you don't want to try a CellCept / Viread / Xeljanz cocktail?
     
  20. Learner1

    Learner1 Professional Patient

    Messages:
    1,080
    Likes:
    1,732
    Pacific Northwest
    I have no idea if he has any underlying issues...but a quick Google search turned up all kinds of articles on using oxygen to increase athletic performance.
    No!!:eek:

    I'm not a fan of taking any pharmaceuticals and am already on more than I ever intended to be on!:bang-head:
     
    Jesse2233 likes this.

See more popular forum discussions.

Share This Page