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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 (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Hi Rrrr, Sue talked many times about a patient with a nickname "witchywoman". I found a link to a word file that has some graphs about her improvement with AZT. That might interest doctor Coffin:thanks, sue! i'm wishing you the very very best.
do you know any other threads or blogs or anything where folks are discussing publicly their personal trials with antiretrovirals? (in addition to dr jones)
Did you or others here try to send her a private message on patientslikeme.org?
And anyway, I think that even if she vanished (perhaps she feels so well that she doesn't mess with that patinets stuff anymore ) it would be a good idea to send that link to Dr. Coffin.
the best thing to do is to ask someone who is seeing dr. klimas to demand that she tell us about what happened to the 8 patients of hers who were on antiretrovirals and were "much improved". she never answers emails about this and dr. mikovits says she doesnt know about dr. klimas' patients.
it's being kept very hush hush and those 8 patients were being examined by a drug company according to an old ABC news article i read.
But at about the same time in the 1990s, University of Miami researcher Dr. Nancy Klimas pioneered lymph node extraction therapies for what was then called chronic immune activation syndrome.
Now, drug companies are taking an interest in her work treating eight patients with reverse transcriptase inhibitors, antiretroviral drugs similar to those used today in HIV/AIDS patients.
"They went from very ill to much, much improved," said Klimas, who now directs the Gulf War Illness and Chronic Fatigue Syndrome Clinic at the Miami Veterans Affairs Medical Center.
While awaiting his results in July, the U.S. National Institutes of Health is funding the next step: Researchers now are recruiting up to 5,000 healthy women in several African countries to use either vaginal tenofovir gel daily rather than timed around intercourse or daily pills containing the drug. It's the first comparison of the two strategies.
feeling very discouraged these days. lack of positive evidence for this treatment. even dr. mikovits is sick of my emails.
so tired of living with this swollen head.