halcyon
Senior Member
- Messages
- 2,482
I believe my part D coverage covered part of it but it wasn't super cheap.Did you have to pay out-of-pocket for an off-label use?
Welcome to Phoenix Rising!
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.
To become a member, simply click the Register button at the top right.
I believe my part D coverage covered part of it but it wasn't super cheap.Did you have to pay out-of-pocket for an off-label use?
Yes. He was trialing it on a few patients.
Only very recently and only on a few patients I believe. It sounded like he had a few people that seemed to notice something from it but I haven't followed up with him since I was on it so I'm not sure if it really panned out for anybody.Didn't realize Chia used this. Do you know if he had any responders?
So I think it is probable that she is referring to Valcyte in the talk to Congress and not retrovirals.
Yeah, that's true. A good friend of hers confirmed that she did was taking Valcyte. Another thing that has helped her is mold avoidance...
Who prescribes anti-retrovirals in US?
Unfortunate because for whatever reason, some have made total or near total recoveries on drugs like Viread
Several of Dr William Weir's patients in the UK, and a few people on this board including @Ellkaye
Jen Brea has also suggested she is using anti-retrovirals in her recent presentation to Congress
Yea I agree XMRV is very likely not the underlying cause
Benefit from ARVs is either due to 1) misdiagnosis of ME/CFS 2) a heretofore undiscovered common retrovirus or 3) some unrelated immunomdoulating property of ARVs
If I had to bet, I'd bet it's 3
I wonder that the whole retro-virus idea was abandoned just because XMRV was not the one.
Surely like bacterial infections, ruling out one bacterium variety, say, E.coli, would not mean ruling out ALL known bacteria as the source of a problem?
I guess time will tell, and certainly 3) is also possible
Judy's name was on it, but she was allowed no input to the work or to even be present in the building. She was made certain promises about the continuation of the retroviral work, but promises were broken.
Things are not as they seem.
I have also heard of a number of people doing extremely well on ARVs, although I didn't hear the rumour/fact that Jen B is using them.
@Jesse2233, this week Jen Brea on twitter said that she is far from recovered but if she wasn't on valcyte she would become bedridden again. Jen Brea I believe in the recent talk to Congress members mentioned she takes a drug that was developed in Aids research. Valcyte was developed to treat HIV/AIDS patients who have CMV infection. So I think it is probable that she is referring to Valcyte in the talk to Congress and not retrovirals.
Viread is used for HIV infection and chronic Hepatitis B infection. It is almost always used with other ARV's for those with HIV infection.With HIV, it multiplies in the CD4 T-cells. When the virus multiplies, virus genetic material is converted from RNA into DNA. For this to occur, the enzyme reverse transcriptase must be present. Viread works by blocking the action of reverse transcriptase, therefore interfering with the conversion of the viral RNA to DNA, which stops the virus from multiplying.
I really think it is time to move on from Judy Mikovits. XMRV has been thoroughly debunked.
A daughter of somebody close to her once told me she is odd and delusional. After reading her book and listening to some of her radio spots and reading some of her speeches, I would agree with that assessment. It's sad that she abandoned ME patients so rapidly and can't come to grips with the reality of the research and leave the conspiracy theories behind.
I doubt the action of Viread is not actually 'antiretroviral'related to ME -- more antiviral. Don't know if I am making any sense here.
Viread is used for HIV infection and chronic Hepatitis B infection. It is almost always used with other ARV's for those with HIV infection.With HIV, it multiplies in the CD4 T-cells. When the virus multiplies, virus genetic material is converted from RNA into DNA. For this to occur, the enzyme reverse transcriptase must be present. Viread works by blocking the action of reverse transcriptase, therefore interfering with the conversion of the viral RNA to DNA, which stops the virus from multiplying.
Correct me if I'm wrong but as I understand it the whole difference between a virus and retro-virus is that a virus stores its genetic info as DNA and so doesn't use reverse transcriptase, whereas a retro-virus stores its genetic material as RNA.
Thus a retro-virus needs reverse transcriptase to convert RNA to DNA prior to it being transcribed by the host cell, whereas a virus does not. https://en.wikipedia.org/wiki/Retrovirus
This means that any drug that blocks reverse transcriptase is actually stopping retro-viruses but not viruses?
Of course there may be other things the drug does to halt viruses, but the reverse transcriptase action would only be affecting retro-viruses in my understanding.
Viread also blocks viral DNA polymerase which is an enzyme essential to the hepatitis virus. Blocking the viral DNA polymerase stops the hepatitis B virus from multiplying thereby lowering the amount of the virus in the body.
So as you can see Viread does work to reduce the viral load of both viruses and retroviruses via two different mechanisms.
Yes antiretrovirals work if you get over the awful IRIS hurdles.
Got there 4th time trying !
Finally !
I think pulsing the arvs and continue treating coinfections one might have with antivirals or antibiotics if needed.
Yes antiretrovirals work if you get over the awful IRIS hurdles.
Got there 4th time trying !
Finally !