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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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thanks, everyone
nothing happening yet...still severely fogged up and tired. trying to tell myself that after 17 yrs of tissue penetration with the virus, it's gotta take longer than 3 days, right?
witchywoman on patientslikeme.com said she felt improvement in a week!
i would feel a lot better if i had a positive serology test. then i would know what i was fighting.
out of the 3 patients that the wpi knows of who are improving on azt....2 of them have had CFS for over 18 yrs.
dr. lombardi had trouble with some lab equipment and had to get it repaired or replaced so if anyone's results are late, thats why.
love u guys
sue
thanks tee. i wish you the best also.
knackered....i tested negative for XMRV by PCR and culture but they are doing the antibody test on my blood now. it is being done in a research setting so it looks like it will take a long time.
today is especially horrible for me and i am feeling very discouraged. hope tomorrow is different.
i rested yesterday and am in bed again today.
love
sue
You'd be best asking Gerwyn.if XMRV is the cause of CFS, shouldnt azt always work?
if XMRV is the cause of CFS, shouldnt azt always work?
You are right that just because something works in vitro does not necessarily mean something will work in vivo, this is usually because many things aren't absorbed into the blood stream very well. We know from HIV research that AZT is absorbed and can inhibit HIV in the body. Since AZT inhibits XMRV in vitro at a similar concentration that it inhibits HIV, I think it is pretty good evidence that it will work in vivo, short of a real clinical trial. If it was some new drug that had never been studied in vivo then much more skepticism about that drug's efficacy would be in order. When a new drug is discovered to do something in a test tube, they first do a Phase 1 trial on healthy volunteers. The Phase 1 trial is done to determine safety and to assess how the drug is processed and absorbed into the body (pharmacokinetics and pharmacodynamics). Of course we already know about AZT's pharmacokinetics etc.Not necessarily. AZT was shown to be helpful in stopping the virus from replicating in a lab study but the body is a far different environment. Researchers can easily stop cancer in test tubes for example but doing the same thing in the body is much more difficult.
Of course AZT has a track record with retroviruses - so they think it could work - but they don't really know.
I am not convinced this is the case, but if it is, immune modulators would probably help. Anything from ampligen, isoprinosine, beta glucan/AHCC, even echinacea could help. We would need to get the immune system to kill the infected cells.Cort said:XMRV may not be doing its damage by replicating; as Dr Mikovits noted - it doesn't appear to replicate much; whatever it does it appears to do simply by sitting in the cell. I don't know if AZT hits viruses when they're not replicating.
What are some reasons AZT might NOT work? My guesses are
1. XMRV doesn't cause CFS
2. Drug resistance
3. Coinfections have overwhelmed the immune system. If this were the case, I would think AZT would still work, but take a longer period of time, a year or more possibly.
4. XMRV or a coinfection is being harbored in a body tissue where AZT can't reach
I am not convinced this is the case, but if it is, immune modulators would probably help. Anything from ampligen, isoprinosine, beta glucan/AHCC, even echinacea could help. We would need to get the immune system to kill the infected cells.
of the 3 people who improved on azt, 2 had had CFS >18 yrs and noticed improvement in 2 weeks.
sure, koan
brain fog
swelling feeling in head and neck
neck pain
aching lymph nodes
fatigue
irritable bowel
some twitching
labored breathing
general malaise
low grade fevers
night sweats