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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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Cortisone shock therapy

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Copaxone is an entirely different class of drug.

Valganciclovir has gotten a reputation for being a heavy duty drug as it has been prescribed for immunocompromised AIDS patients and cancer patients who get infections. These patients are really sick and already have delicate livers and kidneys and valganciclovir has not helped.

My doctor, a top ME/CFS specialist with many very ill patients, prescribed it as it is effective for EBV, HHV6, CMV, and HSV2, all of which I had. He prescribed 2 450mg pills twice a day, a high dose, and I was in that dise fir 12 months before dropping to one 450mg pill twice a day for another 8 months. He only took me off it after I had 4 negative PCR tests for EBV.

Within 1 month, my brain cleared. And after thst, my energy slowly improved. I started IV immunoglobulins about 2 months in as I was immunodeficient as well as having a couple of autoimmune problems and I take 4.5mg LDN. I also have done a lot of nutrient support - acetyl-l-carnitine and antioxidants help the brain.

My doctor had me do "safety labs" every 3-4 weeks throughout, a CBC (complete blood count) and CBC (comprehensive metabolic panel). My AST/ALT bounced between high normal and slightly above range and GFR is a little lower than optimal but still normal. I've had imag8ng done that included my liver and it looked fine. The only bad thing about valganciclovir could be infertility, but other than that, I have nothing but good to say about it. If you cant accept the risk, valacyclovir would be a second choice.

I'd be interested to know if boswellia helps. It's the biblical frankincense. I've taken up to 8 of the Thorne Research boswellia capsules a day..
 

pattismith

Senior Member
Messages
3,941
@Martin aka paused||M.E.
are you doing well?
Still off your methylpred protocol?

I was wondering if you were tested for autoantibodies at Celltrend, some of these receptors are known to modulate immune system
Martin, I am thinking regularly about the fact you are feeling better when your psoriasis is worse.
Some drugs are known to induce or worsen psoriasis, some of them are immunomodulators (hydroxychloroquine), some are already used by some ME/CFS sufferers (beta-blockers).
I wonder if in this group of drug, there is one potentially interesting for you, maybe you could bring it to your doc, so he could have some ideas?
(Hydroxychloroquine is often associated to methylprednisolone to treat some auto-immune diseases like Lupus and Sjogren for example)

"Exposure to certain drugs can elicit an induction or exacerbation of psoriasis. Although well-conducted systematic studies on drug-related psoriasis are mostly lacking, traditionally strong associations have been documented for beta-blockers, lithium, antimalarial drugs such as (hydroxy)chloroquine, interferons, imiquimod, and terbinafine. More recently, new associations have been reported for monoclonal antibody- and small-molecule-based targeted therapies used for oncological and immunological indications, such as tumor necrosis factor-alpha antagonists and anti-programmed cell death protein 1 immune checkpoint inhibitors."


https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5774610/
 

lenora

Senior Member
Messages
4,926
OK, so this is now 2 yrs. later and in addition to my "normal" problems, I have 7 stents, one in my carotid artery, obviously heart disease, high blood pressure (controlled with meds), 2 separate types of epilepsy, GI surgery and 5 pelvic fractures, plus one vertebra fracture (3rd time). All healing and pain is over, I'm just trying to become part of the human race again. Last epileptic fall resulted in better sleep....go figure that one out!

I take few vitamins but know that meds have to be the larger part of my therapy. I definitely don't want a repeat of the autoimmune encephalitis, although somewhat more is known about it today. Mine was confirmed by spinal taps on two different occasions.

I'm now walking again after my fall, but I don't trust myself in the same way. I take care of myself. One big remnant of the encephalitis: I can no longer climb stairs. I most sincerely hope that you're regaining some strength and health...keep searching and learning. It's helpful & interesting. Yours, Lenora