Gingergrrl
Senior Member
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Jesse, would you want to add doctors who treat MCAS or mold/CIRS? This might be helpful (or it might complicate the map too much)?!
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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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Jesse, would you want to add doctors who treat MCAS or mold/CIRS? This might be helpful (or it might complicate the map too much)?!
Sure, what color do you think I should make the mold and MCAS docs
Also who are some examples of MCAS drs?
I thought I heard Podell retired.
Also, ME/CFS specialist Dr. Paul Cheney in Asheville, NC.
doctors such as KDM included with the science based doctors
Nexavir seems somewhat fishy.Dr Horowitz, lyme Dr. Hyde Park, N.Y
I second the idea of MCAS Drs - i can give you a good list of them for UK, @Gingergrrl has a good list for US.
Here we go again.
Professor Dr De Meirlier is a qualified internist, researcher, cardiologist, lectured for many years at Brussels University, co-authored the ICC and is very up to date with current research.
Can you name me a particular treatment he gives patients that you do not consider science based?
Nexavir seems somewhat fishy.
I am aware of it, but when you think about it, a blend of amino acids and peptides would indeed have that effect too,in the right "metabolic context", in the right body. It's fun stuff really, Nexavir is@ivorin, Nexavir has been shown to have antiviral properties against EBV and HHV-6 in vitro (although that does not prove it has in vivo antiviral effects). Plus it is considered to be an immunomodulator. There was also a study apparently showing efficacy for ME/CFS. That's the basis of its use in ME/CFS. But as I say, I've yet to come across anyone raving about Nexavir's benefits for their ME/CFS.
That would be of his patients who are prescribed it- it’s not an across the board treatment for his patients. I know some patients who love it. I’ve never been prescribed it.It does seem suspect, on the grounds of efficacy: I have never come across any ME/CFS patient on these forums who made a substantial improvement on Nexavir / Kutapressin (although there are reports of people improving on Valtrex / Valcyte). Dr Derek Enlander uses Nexavir too, and says 30% of his patients improve on Nexavir, but he does not quantify those improvements.
KDM says that 70% of his patients respond well to Nexavir, achieving a 20 point increase on the Karnofsky scale in 6 months. I find that hard to believe, as a 20 point increase is a major improvement (it's the equivalent of moving up one level on the ME/CFS scale of mild, moderate and severe).
But we are way off topic
Maybe have two versions, one as a clean and simple jpg for patients with cognitive difficulties and another with google maps integration including layers for local and globally renowned specialists