Gingergrrl
Senior Member
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Hahah, you don't want to try a CellCept / Viread / Xeljanz cocktail?
Eeek ... and I hope you are not going to be on this cocktail either LOL.
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hahah, you don't want to try a CellCept / Viread / Xeljanz cocktail?
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
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!
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....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!
Eeek ... and I hope you are not going to be on this cocktail either LOL.
The type of DNA damage is different between UBI and ECP. UBI causes formation of thymine dimers and 6:4 photoproducts, which are intra-strand crosslinks, while ECP causes formation of inter-strand cross-links when the photoactivated psoralen reacts with nucleic acid base residues in both strands
This is a pretty basic question, but how did you find this immunologist who treats ME/CFS?
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.
Glutathione can be useful, but there's a lot more to it than just glutathione depletion. What is depleting glutathione?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.
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!
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.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.
I would be cautious if suggesting photophoresis and ECP are comparable.
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,
Given that it has a polarized effect, you will make some patients worse, too, theoretically.
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.
He said this has not yet been tried for my condition and the apheresis director said it would basically be an experiment
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.
Wow, am just catching up and this is exciting (and a bit scary)! Please keep me posted.