Who Prescribes Anti-Retrovirals in US?

[halcyon]

Did you have to pay out-of-pocket for an off-label use?

I believe my part D coverage covered part of it but it wasn't super cheap.

 

[Jesse2233]

Yes. He was trialing it on a few patients.

Didn't realize Chia used this. Do you know if he had any responders?

 

[anniekim]

@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.

 

[halcyon]

Didn't realize Chia used this. Do you know if he had any responders?

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.

 

[dannybex]

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 was taking Valcyte. Another thing that has helped her is mold avoidance...

 

[Jesse2233]

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...

Glad that got corrected, makes more sense

Here are two who had improvement on ARVs http://www.x-rx.net/blog/2013/01/our-experience-with-antiretrovirals.html

 

[patient.journey]

a combination that a lot found to work from who i did talk to is Truvadu and raltegravir , people who think they have typical CFS/ME or even people with HIV like illness in china who got 80-90% symptoms similarities to CFS /ME patients !!

how it works is not well known but it doesn't give that big space to think of ,, its known that this combination or even one of them work against HIV1/2, HTLV ,XMRV, XMLV , Herpes family , hepatitis B and endogenous retroviruses so its working to inhibit one or more of those viruses or an unknown viral infection in the patients body .

 

[Undisclosed]

Who prescribes anti-retrovirals in US?

Why anti-retrovirals in particular. Have you been diagnosed with one of the known retroviruses?

1. human immunodeficiency virus (HIV)
2. human T-lymphotropic virus type 1 (HTLV-1)
3. human T-lymphotropic virus type 2 (HTLV-II)​

XMRV is not included in this list as it was determined to be contamination.

Or are you interested in medications known to reduce viral load which might include antiretrovirals as well.

I think many ME docs would be more likely to prescribe antivirals over ARV's.

Unfortunate because for whatever reason, some have made total or near total recoveries on drugs like Viread

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.

There isn't a cure for HIV. What Viread does is decreases the viral load in the body, helps the immune system to recover, and slows down or stops the progression of the disease from HIV to AIDS.

Since Viread is also used to lower the amount of Hepatitis B virus in the body it obviously works on viruses other than retroviruses. And these seems to be true of other antiretrovirals who have an effect on other viruses. It isn't a cure though -- could decrease viral load with associated symptom decrease.

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

The question is why are they working and research strongly suggests the absence of any retroviruses in the ME/CFS population. Some research supports that viruses play a role and some do report antivirals as very helpful. As I just said, antiretrovirals can have effect on other types of viruses too.

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

As I said, ARV's can also act on non-retroviruses so maybe not a misdiagnosis as increased viral load seems to present in a sub-population of patients. It could be that ARV's are reducing the viral load (not retroviruses but other virus types in patients -- lots of research -- just google eg; Coxsackie B virus (CBV), Epstein Barr virus (EBV) and human herpes virus-6 (HHV-6)). And yes it could also be some unrelated immuno-modulatory effect. Or none of these.

Wish they would research this properly.

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

There has been a lot of research into retroviruses and so far there are only three that effect humans. The search goes on though. One can rule out retroviruses without ruling out other types of viruses.

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.

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.

Anyways, for those who don't know the tale of XMRV or what to review what went wrong -- here are some links:

https://laikaspoetnik.wordpress.com...ence-of-xmrv-in-chronic-fatigue-syndrome-cfs/
https://laikaspoetnik.wordpress.com...hould-never-have-accepted-in-the-first-place/
http://phenomena.nationalgeographic.com/2011/05/31/the-chronic-fatigue-virus-de-discovered/
http://www.chicagotribune.com/lifes...ic-fatigue-syndrome-paper-10032011-story.html
http://retractionwatch.com/2011/10/...r-mikovits-now-fired-share-data-with-science/
http://scienceblogs.com/erv/2010/01/13/xmrv-and-chronic-fatigue-syndr-5/
http://scienceblogs.com/erv/2011/09/30/xmrv-and-chronic-fatigue-syndr-29/

http://scienceblogs.com/erv/2012/01/03/indulging-idiots-looking-for-x/

Of course there is tons more on the internet - just google.

@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.

That seems correct.

Anyways, I hope you can find a doctor to treat you with what you want.

 

[Jesse2233]

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.

Interesting and likely a good possibility

 

[dannybex]

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.

It's really pretty sad. She doesn't seem to realize that she's become her own worst enemy. There's no way anyone would hire her after her actions of the last 2-3 years or so.

Anyway, moving on.

 

[Keela Too]

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.

 

[Undisclosed]

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.

You are correct the reverse transcriptase action would only affect retroviruses.

Viread blocks the enzyme reverse transcriptase in a retrovirus which decreases the viral load of a retrovirus.

And

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.

 

[Keela Too]

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.

Okay that makes sense.

 

[Hustler]

Yes antiretrovirals work if you get over the awful IRIS hurdles.
Got there 4th time trying !
Finally !

 

[heapsreal]

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.

 

[Hustler]

I think pulsing the arvs and continue treating coinfections one might have with antivirals or antibiotics if needed.

Roger that

 

[fireflymd]

Yes antiretrovirals work if you get over the awful IRIS hurdles.
Got there 4th time trying !
Finally !

Thank you for replying!

If you achieved improvement with anti-retrovirals, would you mind sharing which meds and dosing?

And did you find a physician who prescribed it? If so, did insurance cover it?

If you would prefer, please feel free to message me directly.