Antivirals for MLV-related Viruses (CFS type 1 to 4)

[Rrrr]

!! This is Great news about medicare and humana. It's what I have as well. But I was on the web site, trying to search for tenofovir and raltegravir and it kep showing up blank. It was so aggravating! So, thank you for this... now I know I can possibly be able to go on a persoanl test trial if and when I and my doc decide to!

even though I was tested and XMRV was found, I plan on getting retested, to assertain what strain I have (mlv's). Then I will consider and start the research on which ARV's might be more effective than others.

Until then, although my primary doc is Very supportive, she is not an infectious disease specialist, and although she treates HIV patients, she is not comfortable with prescribing the ARV's... yet. I am sure she'd be very supportive of what I decide to do.

But, I know need to consider where to find an open minded infectious disease doctor. I am in Colorado, but will travel to see one if I cannot find one closer to home (Within 300 miles or so).

If anyone has ideas, please email me? Is there an 'underground' list of open minded docs interested in helping us? =p

Thanks Rrrr!!

katieann,

unfortunately, it has come to my realization that humana/medicare will likely only cover these meds if we have an HIV disagnosis. one of us should call them to ask, and then report back here.

rrrr

 

[Rrrr]

i have a source who knows a lot about xmrv/MLV-related viruses. after sending this source the two published papers mentioned in the first post of this thread, i was told that just these drugs (mentioned in the first post) are being used in humans with XMRV, based on these publications.

when i asked if the meds were found to be helpful, the answer was yes. when i asked which of the meds were being used, i did not get a response. so maybe i was asking too specific a question for the source's liking.

 

[calzy]

Daffodil........why do we need 3? She only mentioned 2..dont know about the drug co connection.

 

[heapsreal]

hi hip,
i read about famvir having antiretroviral properties in the book, reviving the broken marrionette. There was no reference in the book to where this info came from and this book was written before xmrv discovery.

cheers!!

 

[calzy]

katieann,

unfortunately, it has come to my realization that humana/medicare will likely only cover these meds if we have an HIV disagnosis. one of us should call them to ask, and then report back here.

rrrr

Dr. Klimas said the drug providers will most likely pay cause they dont know yet about the research and use off the off label meds.....okay, can you tell Im foggy from my trip yesterday?

 

[Daffodil]

calzy..yes i think i read that klimas was working with a drug company...she treated 8 patients with ARV's a long time ago, according to an abc news article i read.

i heard 3 was better than 2 to decrease likelihood of resistance developing.

Rrrr..i have also heard this...that the drugs are being used successfully. i just wish they were working for me. but then i dont even know if i have XMRV yet - just ALL the symptoms and markers!

sue

 

[gregf]

G'day Daffodil.

I am new to this forum and really do not want to offend.

So sorry, I did not realize there were people at "end stage".
Almost afraid to ask what that means.

Cheers,
Greg.
Australia, ME 5 years.
PS Your PM inbox is full.

 

[Daffodil]

greg no worries! its weird because i feel like death all the time....but i know people who have had cancer twice from this and can still function pretty well. its gotta be different strains or something.

 

[Daffodil]

i dont see how plants can get into the blood at adequate levels...? i know they work in vitro.

indinavir is looking better and better, at least for those who need something now.

i must have viral reservoirs from hell by now!

 

[WestOzGirl]

Ignore as I repeated a post

 

[grant107]

katieann,

unfortunately, it has come to my realization that humana/medicare will likely only cover these meds if we have an HIV diagnosis. one of us should call them to ask, and then report back here.

rrrr

When you look at a prescription it only list the drugs being prescribed, not what the drug is for. As long as a drug is on the market it can be prescribed off label for what ever the doctor deems necessary.

 

[*GG*]

Dr. Klimas told me yesterday, she will not include AZT in her protocal when its established. AZT affects the mitochrondia (sp). and we are already deficient in that area.

I would imagine this is subject to change/research. I know we probably have Mito issues, therefore PEM. But perhaps people who are more functional, could deal with the AZT, therefore in the future they could be even more functional?!

 

[Cloud]

When you look at a prescription it only list the drugs being prescribed, not what the drug is for. As long as a drug is on the market it can be prescribed off label for what ever the doctor deems necessary.

True, unless your drug company asks for a Prior Authorization, which is basically requesting the doctor justify the drugs use. I would suspect most drug companies are going to ask for a prior auth for ARV drugs. Sometimes it comes down to how convincing the doctor can be justifying the drug's use....other times, they just won't allow coverage for "off label" use, period. I suspect we will have some problems getting HIV drugs covered for XMRV....at least at the start. One can always compare drug companies and plans. There are hundreds with part D. There are also the drug company compassionate care programs.

 

[August59]

G'day Daffodil.

I am new to this forum and really do not want to offend.

So sorry, I did not realize there were people at "end stage".
Almost afraid to ask what that means.

Cheers,
Greg.
Australia, ME 5 years.
PS Your PM inbox is full.

No problems Greg and appreciate the input. I only personally know one "End Stage", but I think "Late Stage" sounds better. This person has had it for about 15-20 years, slowy, but continously worsened over the last 15 or so years, but has really snowballed in the last year to severe cardiac problems, all of sudden developed lupus, liver is degenerating and just recently had to go oxygen (24/7) because of COPD and the pulmonologist (a non CFS believing doctor stated that "it has to be coming from the CFS because all of your test are normal - sounds familiar, but at least he didn't say it was all in her head) plus they are at the late fifties stage. They will spend every bit of energy they get to login to these forums because it's the only place they can get "HOPE" (I guess this is the best word to use).
We definately appreciate all/any information and most of all "Welcome" to the forum and hope to see many more post from you. My daughter was in Sydney last year as a Student Ambassador - She loved it except for the "Vegiemite". Back on subject - Sorry

 

[August59]

As I was reading this thread, a previous thread kept popping in my head. One of the earlier post reference another article about drugs for HIV-1 and how well they penetrated the CNS (or they termed to mean the BBB as well). I would suspect viruses act differently once they are in there and I remembered the study done at Georgetown concerning a high percentage of ME/CFS people having irregular proteins and a higher presence of amyloid plaques http://www.forums.aboutmecfs.org/content.php?92-Proteins-on-the-Brain-A-Breakthrough-for-ME-CFS and here is another pretty thorough study on curcumin and it's effects on Beta Amyloid and supports its use in protecting the brain. http://www.jbc.org/content/280/7/5892.full

 

[katieann]

So yeah, thank you to all those that offerred/confirmed informaiton regarding off the shelf uses of ARV's (Rrrr, Caly etc), and that they may try request prior authorization of the condition before perscribing (Humana/Medicare).

Also thanks for the Quercetin information! I was plagued with the brutal pressure, head stinging (which felt like lightning strikes to me). I also experinced something I can only describe as my head being a one holed bowling ball, stuffed like the cargo hold from Deadliast Catch on their way back to Ducth Harbor, except with wet paper mache, then someone stuck a high pressure hose into the one hole left and tried to put in more pressure. My head would respond like a tire when you pull off the air hose; that escaping of air thingy(Yeah, I could actually hear it inside my head). To top all that off, everytime my head went 'ssssss', it was coupled by a solid white reaction seen from the inside of my eyes. Really really really nasty nasty.

I've been blessed where that has camled down a lot (after 11 years), but want to try Quercetin anyway, since I still have brutal pressure headaches, and there are sometimes where I overexert and the head thing starts up again.


I have started to send letters out to some HIV ifectious disease specialists in Colorado to see if I can peek their interest in mlv's, and hopefully they would be open to an AVR trial, after they did their own coorespondance with others doing so.

Remember in the movie "Jaws" where Quinn is describing his experience in teh water with the rest of the Indianapolis crew?, and the planes finally started to rescue people? He said that was the Worst part of the experience; waiting his turn to be pulled from the water. It's how I feel about the currrent state of things with mlv's etc... I am XMRV positive (or whichever MLV strain I have), and sicne the news where the NIH/FDA confirmed the associations, that's how I feel. I am a bit afraid I won't be rescued in time; hence why I am wanting to really do down the ARV road. I am single, no family and see no reason to not, as I am not responsible for anyone but myself, and if my being a guinea pig helps someone else, then yeah, I'm all for that. I've had this since 1993 (had the insidious onslaught), and was bedridden for 6 years; now just house and couch bound 95% of the time.

Thanks for the information!

 

[katieann]

Ok- medicine lifts us up where we belong... C'mon - sing it with me...)

Noooooooooooooooo!!!! Now it'll be in my head all day!! rofl

 

[katieann]

Rrrr,

I talked to Humana today, and AZT, Tenofovir and raltegravir are covered for me. AZT and Tenofovir are Tier3's and the Raltegravir is a tier4.

I askes her SPecifically if Humana would require a pre-authorization, and/or if my doctor just needed to write the perscriptions. Her answer was: "No" on th epre-authorization. I am confident that all we need to do is have the prescription. EDIT: I just saw this under 'coverage' on humanas web site for Isentress:

"Prior Authorization: Your doctor must obtain approval from Humana before we can cover a prescription that requires "prior authorization."
"

lawls.... so, who really knows.

EDIT: I am confused by what teh web site is telling me vs. what she said. The web site says there is no generics for Viread (Tenofovir) and Isentress (Raltegravir), and uit shows me a price, but I have no idea if the price represents what I will pay, or the price that is covered. arg. She was very very sure I was coverred, so I am thinking I am, but in the meantime, I have the forms from Needymeds.org to apply for coverage if necessary. :worried:

EDIT2: Confirming with Humana/Medicare yet again, there's no way I can afford the brand names Isentress (Raltegravir) and Viread (Tenofovir), and they do not carry the generics.

goodgrief. Here's teh pricing:

Pricing - VIREAD (Tenofovir)
Dose & Form: 300 MG TABLET (edit) Tier: Tier 3
Quantity: 90 for 90 Day supply (edit) Coverage: Covered
Generic: N/A Your Plan: Ind Med MA PD PFFS
Mail Order Pharmacy Drug Days Supply Total Drug Cost Your Cost*
RightSourceRx
Enjoy the convenience of Humana's
prescription home-delivery by mail. VIREAD 90 $1,953.96: my price for 90 days= $200.00'ish
Best Value!

Pricing - ISENTRESS (Raltegravir)
Dose & Form: 400 MG TABLET (edit) Tier: Tier 4 Quantity Limits: 60 for 30 days
Quantity: 180 for 90 Day supply (edit) Coverage: Covered
Generic: N/A Your Plan: Ind Med MA PD PFFS
Mail Order Pharmacy Drug Days Supply Total Drug Cost Your Cost*
RightSourceRx
Enjoy the convenience of Humana's
prescription home-delivery by mail. ISENTRESS 90 $2,840.88 my price for 30 days $1,172.08

Viread is a Tier 3 drug, so the co-pay is $80.00 for 30 days, until I reach a max of $2830 (and go into stage 2).
Isentress is a Tier4, so I pay 33% or about $400.00 for 30 days.

at any rate, I can't even afford he stage 1 price, and would have to have another 4,550 out of pocket for stage 2, until I pay 5% for any tier drug.

Hope this helps others with humana/medicare.

needymeds.org <---- maybe this url can help someone


:sofa:

 

[Daffodil]

katie...may i ask if you are xmrv+? glad some more people are thinking of trying the meds...

sue
xoxo

 

[katieann]

katie...may i ask if you are xmrv+? glad some more people are thinking of trying the meds...

sue
xoxo

yes, I am Sue. Got my results from VipDx in May.

But, confirming with Humana/Medicare yet again, there's no way I can afford the brand names Isentress (Raltegravir) and Viread (Tenofovir), and they do not carry the generics. About 2 months of appx. $400.00 out of pocket for the brand names, I'd be in the 'phase 2' range, and would have to pay 100% of the costs. If they do not carry the generic forms (and they don't), I am sol. Glad I still have the forms from needymeds. Although my biggest fear is that my disability benefits will be over the percentage they require to apply.

back to square one.

~sigh~