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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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SF Bay Area Patients-Help?!

Navid

Senior Member
Messages
564
Hi:

My patience has dried up...I need help or a booster shot of patience.:(:confused::(

I tested positive in Oct 09....even though there was no replication/validation/whatever....i wanted to start treeatment then.....of course that was impossible.

However, now with Alter/Lo paper and the soon to be 4-5 further papers of validation, i am really losing my cool in waiting for some new treatment.

ok that's the end of the rant...now the plea.

are there any docs in the sf bay area: cfids, hiv/aids, anyone: trialing arv's or rituxamib(sp?) with their patients.

you can pm with this info if that is preferable.

i am currently treating w/valtrex, artesunate, pain killers and sleep aids (klonopin/doxepin).....i am totally exhausted and in pain all the time and really sick of it.

thanks for any help or hope you can provide.

(please do not respond that it is not proven if xmrv/mlv's are causal to cfid's or that arv's are dangerous and have not made some people better. i know both of these things and do not care. i want to try a new treatment and that is the help i am looking for...thanks.):D

warmest regards.
 
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