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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. Gingergrrl

    Gingergrrl Senior Member

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    Eeek :eek:... and I hope you are not going to be on this cocktail either LOL.
     
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  2. mrquasar

    mrquasar Senior Member

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    This is a pretty basic question, but how did you find this immunologist who treats ME/CFS? (Same question to other posters who are being treated by immunologists) There are plenty of immunologists in my area, but none of them are listed as treating ME/CFS. I've considered going to one but I'm scared of the "I've never heard of that before" response.

    Thanks!
     
  3. Jesse2233

    Jesse2233 Senior Member

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    Fair question and I wish I had a good answer. I was referred to him by many doctors in my areas as being an expert in the immune system, guess I got lucky. If anyone would like his name, feel free to PM me
     
  4. Learner1

    Learner1 Professional Patient

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    Many of us are being seen by the doctors known to be ME/CFS experts. There are none in my state, so I flew to California to see one, who found multiple problems that doctors in my area do know about and should be able to treat, but if you go in with ME/CFS, they're "hands off" and suggest psychotherapy....

    I subsequently saw an immunologist here at a major research university just as a backup to support me if I ended up in the ER or hospital being that my doctor is out of state without privileges here. He agreed upon about half of the diagnoses and treatment plan, but didn't understand the rest, even though there's plenty of science to support it with my abnormal labs right under his nose.

    Finding an expert catapulted my treatment forward. I also see a local naturopathic doctor who has been more helpful and has more knowledge about my abnormalities than any local MD I've seen, and he was correct in his diagnoses, which led me to pursue deep immune system expertise.

    Having some sort of team is valuable.
     
  5. Jesse2233

    Jesse2233 Senior Member

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    hahah nooo, the only one I'd consider at this point is tenofovir
     
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  6. Jesse2233

    Jesse2233 Senior Member

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    This paper on UBI @Learner1 unearthed is really interesting... it elucidates many different mechanisms of action that are potentially beneficial, which given the great similarity between the two treatments, likely apply to photopheresis (ECP) as well.

    Some of these are especially intriguing in light of current ME/CFS research

    Tagging @Murph @necessary8 @nandixon @mariovitali as they might find these effects interesting

    Red blood cells
    • ATP decreased while content while ADP, AMP and adenine compounds increased
    • Hypotonic Na+ and K+ ion exchange and hematocrit values increased
    • Significantly increased the immunosorption activity
    • Cell surface properties of circulating erythrocytes were altered, which contributed to the prolongation and more effective therapeutic benefit of autotransfusion
    • Increased polymorphonuclear leukocyte production of peroxides (H2O2)
    Neutrophils
    • In chronic inflammatory disease, the concentration of large IC-IgG, IgM, and small IC-IgM immunocomplexes showed a linear and inverted correlation when UBI was carried out on autotransfused blood
    • T-lymphocyte survival was enhanced after UV-B or UV-C exposure
    • Cells treated with UV-irradiation in the presence of cycloheximide (a transcriptional inhibitor of protein synthesis) could prevent the activation of iNOS synthesis
    • Enhanced adaptive process to reduce stress through activated neutrophils, lowering of disseminated intravascular coagulation, and changed atherogenic metabolism
    Lymphocytes
    • There was a dose dependent reduction of all cytokines (IL-2, IL-4, IL-5, IFN-γ, TNF-a) 72h after irradiation
    Phagocytes
    • Increased phagocytic activity of human monocytes and granulocytes; the improvement in phagocytic index was related to the irradiation dose, and the initial level
    Low-density lipoprotein (LDL)
    • Greatly enhanced reactive oxygen species (ROS) production by monocytes
    Redox status
    • Activate the myeloperoxidase (MPO) and the NADPH-oxidase systems and lipid peroxide (LPO) concentration in donor blood
    • Reduce the free radical damage and elevate the activity of antioxidant enzymes after spinal cord injury
    • SOD and GSH-PX were highly increased and showed significant differences compared with other groups; while FR and MDA decreased significantly
    • Decreased MDA and FR content in the spinal cord tissue
    The paper also lays out an interesting difference between UBI and ECP, albeit one that shouldn't (?) affect the aforementioned MoAs.
     
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  7. Gingergrrl

    Gingergrrl Senior Member

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    I have a local doctor who is an allergist/immunologist but he is treating me for MCAS. He is working in conjunction with my other doctor (who is not local) and prescribes my IVIG and Rituximab so I can do them at local infusion center. I was very lucky to find them both and do not think a random immunologist could have helped in my case.
     
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  8. mrquasar

    mrquasar Senior Member

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    I found a local supposed ME/CFS specialist and have seen her a couple times, but the only treatment she offers is glutathione shots. She also discouraged me from getting my IgA and IgM levels tested after my IgG came back normal. I want to get more immune tests done but I'm not sure if she would be on board with that. Her ME/CFS knowledge also felt a bit outdated to me.

    The only other options I'm aware of are flying to either OMI in California or Dr. Klimas in Florida. Again, plenty of immunologists locally, but not sure if they'd be on board with more immune tests either since my CBC was normal. :bang-head:
     
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  9. Learner1

    Learner1 Professional Patient

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    Glutathione can be useful, but there's a lot more to it than just glutathione depletion. What is depleting glutathione?

    Really, any doctor can run tests. They just have to want to.

    Immunoglobulins can change over time, so getting retested, especially if they're on the low end of normal, might be smart. And testing subclasses. Over time, my total IgG went from above 800 to below 600, and at one point, total IgG was just above 700 but subclasses 1 and 3, which fight viral and bacterial infections, were low. And my IgM went from low normal to 2/3 from 0 to the bottom of the range.

    You could have a T lymphocyte panel run, and cytokines tested. And be tested for herpes family viruses, Parvovirus, Cocksackie virus, any other virus common to where you live or have travelled, mycoplasma and chlamydia pneumoniae, and Lyme and co-infections. Almost all are available through LabCorp.

    You could have a tilt table test for POTS. A CPET test for PEM. Tests for histamine, tryptase, prostaglandin D2, Chromagranin A for MCAS. ANA and antibody tests for weird auto immune issues.

    Nutrient testing to look for B vitamin, antioxidant, amino acid, fatty acid, or mineral deficiencies. A SIBO test and a stool test for intestinal parasites, microbiome imbalances, and candida. Heavy metal testing. SED rate, hs-CRP, serum ferritin, iron panel, ceruloplasmin, homocysteine. Thyroid, adrenal, pituitary, hypothalamus, and sex hormone levels.

    These doctors get paid a lot of money. They are smart. Unfortunately, they were diligent, rule following students, raised by a system that teaches them to "look for horses, not zebras."

    If you're really that sick, something will be off in testing. And if your doctor is clueless at that point about how to help you, you'll at least have a nice stack of test results to take to a real expert who can work on fixing you.

    Theres something to be said for getting testing locally before inconveniencing yourself to fly across the country. I hear there are a few doctors in Houston. Maybe you can find one to help you...

    Good luck!
     
    Last edited: Nov 5, 2017
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  10. perovyscus

    perovyscus

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    Quick notes: the Klimas study increased pro-inflammatory cytokines in the transplant, it is the converse of photophoresis. The photophoresis results look similar to regular double filtration plasmapheresis.

    I would be cautious if suggesting photophoresis and ECP are comparable.

    Any UV will likely enhance pro-inflammatory milieu - see data for altitude (even excluding hypoxia's role), tanning salons, lupus. The former two are far better inducers of UVB and more cost-effective. What about the cytokine reduction in small-studies? Plausible attribution to blood volume loss from the tubing and anti-coagulant. If you have seen the process, my explanation is better, especially given the 3.5% exposure of total blood volume to UV.

    ECP is mostly moot because those who practice it will not administer it to a CFS patient. I am saying you could get 100 No's in a row, if you can even make an appointment with them, if you could afford it out of pocket. Given that it has a polarized effect, you will make some patients worse, too, theoretically.

    Dr. Chia's target T-cell therapy has the exact same problem, the problem of 100 No's... except it is far more likely to work. Add pathogen-specific T-cells intravenously to antibody-positive illness. If one does not believe in the infectious etiology, then Klimas's abandoned framework works equally well.
     
  11. mrquasar

    mrquasar Senior Member

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    I appreciate all of your helpful advice! I've had a few of those tests done, but without health insurance, I can't afford to do all of the others. I can do a few per year for now.
     
  12. Learner1

    Learner1 Professional Patient

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    I understand. One good test can help for a long while. And once you grasp your personal dynamics, its easier to spot symptoms and to self-correct.

    Best wishes...
     
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  13. Jesse2233

    Jesse2233 Senior Member

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    ECP is an acronym for extracorporeal photopheresis. Did you mean ECP and UBI?

    Yes this has been historically true and likely continues to so be in most cases. But the 101st response could be a yes. My immunologist prescribed photopheresis for me (without me suggesting it or even having heard of it) and my diagnosis in his file clearly states CFIDS.

    Not sure I follow here, can you explain?
     
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  14. Jesse2233

    Jesse2233 Senior Member

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    Update: The apheresis team at my immunologist's hospital has signed off on a trial of photopheresis 2x a week for 4 weeks. If I receive benefit during this period of time further treatments will be considered. My immunologist will be measuring various inflammatory markers during this period.

    The next step is to work with hospital billing to get insurance approval.
     
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  15. jaybee00

    jaybee00

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    Cool. Any idea how much this would cost per session if you are paying cash? Has your immunologist tried this before for CFS? Thanks and good luck.
     
  16. Jesse2233

    Jesse2233 Senior Member

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    Don’t know the cost yet but I’m prepared for some sticker shock

    He said this has not yet been tried for my condition and the apheresis director said it would basically be an experiment
     
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  17. jaybee00

    jaybee00

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    I saw one comment in a blog post where someone with CFS mentioned that they had undergone photophoresis and it helped a lot. I'll try to find it tomorrow. Also if insurance won't cover, this treatment is available in cheaper places like Thailand, India, etc.
     
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  18. Gingergrrl

    Gingergrrl Senior Member

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    Wow, am just catching up and this is exciting (and a bit scary)! Please keep me posted.
     
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  19. Jesse2233

    Jesse2233 Senior Member

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    Interesting! Would be very interested to read that

    Yes! Will do! As far as I can tell the side effect profile for ECP isn't too bad
     
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  20. Jesse2233

    Jesse2233 Senior Member

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    @necessary8

    Interested in your thoughts on ECP in the context of CD39 dysfunction
     

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