The Hammer - Vistide and Dr. Peterson

[hvs]

KC22: skipped valycte, because Doc P believes Visitide is less toxic and, I think, more effective.

Ross: Thanks. It is indeed good. I remember you saying that your cognitive function improvements are far outpacing improvements in stamina. I'm seeing cognitive improvement, too, but not up to max. What is the incline cohort? I guess you could describe it as well as I: unknown agent or an illness flips a genetic switch that messes with neuro-immune regulation which leads to a umber of problems including big infections from common herpes viruses. Is that fair?

I guess an easy way to get the answer would be to take another look at his 2009 Sweden presentation: http://video.google.com/videoplay?docid=1822629466699462451&ei#

asus389: I don't know which tests he only trusts Wisconsin Viral Labs with and which he will take Labcorp's word for. If I'm not mistaken I think he thinks HHV-6 is the very trickiest.

 

[hvs]

So, it's been not quite two months and I've gone from a 3 to a consistent 5, an all-time high since I got ill. I can't wait to continue my infusions; I can hardly remember what 6 feels like.

Loving life at a consistent 6 on the exclusive, trademarked HVS scale (in which 1 is getting out of bed only to use bathroom and 10 is capable of everything demanded of life--not playing sports or anything like that, necessarily).
It's a great feeling. Even feel 7 quite often when I've carefully rationed my energy, but I'm consistently at 6, no problem.
I'll reach the three-month point on vistide in a little over two weeks.

 

[August59]

Ross - If you don't mind me asking. What dosage are you at on the Vistide? And, did you titrate up to this level from an initial starting dosage?

 

[Hysterical Woman]

Vistide Part D

Hi Everyone,

Just checked the formulary for my part D provider AdvantraRx and they do not cover vistide at all. Please forgive me if this info has already been covered, but can anyone who has this drug covered by their Part D provider please post the name of that provider?

Thanks,

Maxine

 

[Hysterical Woman]

Just in relation to people talking about hpa axis and neurological things being a cause of cfs as well as viral infections, from what i have read cytokines produced from viral infections can cause alot of these neurological symptoms, they can be somewhat stimulating giving that tired but wired feeling. When others have had some symptom relief from doxepin, klonopin, lyrica etc, i think these things help curb the effect of these cytokines, even b12 has this effect, but as always everyone is different.
I still think going after these viruses is the ticket, myself i have had good improvement with probenecid and famvir although not 100%.
Being in australia leaves us limited in treatment, I am envious of the amount of cfs docs in the states who are willing to try these antiviral treatments, just hope it becomes recognised world wide then theres a chance of these treatments in Aus.
cheers!

Hi Heapsreal,

Don't be too envious, there are many of us here who have been prescribed these meds but can't get them because of the cost! Very frustrating.

 

[Hysterical Woman]

Ross/Vistide

Weldman: Vistide is covered 100% on my Healthnet Orange part D. Also, did you know that you can go to the M-Care website and search part D plans for coverage on any particular med? You can also do that easily on the phone with M-Care

Hi Ross,

Thanks for the suggestions. I have been looking at Medicare on line and having much hard time sorting thru things this year than last year. When I type in vistide into the search for several of the plans in my area I get the same message that the formulary information is not available and I need to call the individual plan. I might have to call the Medicare line and hopefully can get more information that way.

Do you know if Healthnet Orange Part D will continue to cover vistide next year?

Thanks!

Maxine

 

[Hysterical Woman]

Hi Maxine.....I would suggest calling M-Care and let them do the work. They will pull that info right up for you.

With Dr Petersons prior authorization and subsequent appeal of their denial, I was approved for a year of Vistide treatment. He must have written quite an appeal because that's a lot of Vistide and it's not indicated to be taken that long. You may want to look into the fact that most of these part D drug companies say Vistide is "Not covered"...."Without a Prior Authorization". That may be what your seeing on-line. I would call them....much easier. As far as coverage beyond a year......Dr Peterson would have to do another request, but I doubt we will do that since the usual regimen was only 6 months anyhow. I am at month 11 now. I don't think he has ever had anyone on it over a year, and the drug is dangerous......so probably a non issue. Also, xmrv may have implications for this treatment.

Hi Ross,

Thanks for all of the information. I will call Medicare to see what I can find out. It would be a long shot that I could get Vistide anyway. I have seen Dr. Lerner a couple of times and already can't afford the valcyte & valtrex combo he prescribed. And I am worried about the toxicity of valcyte - there don't seem to be any easy answers. I would have to find a local infectious disease guy who would be willing to try vistide.

Good luck with your continued treatment and please keep us updated as to how you are doing.

Maxine

 

[hvs]

I am at month 11 now. I don't think he has ever had anyone on it over a year, and the drug is dangerous......so probably a non issue. Also, xmrv may have implications for this treatment.

Ross, when are you heading back up there? You must be due. It'd be interesting to hear what plans he has for you. You've got to think he'll test you for xmrv.

I head back in two weeks (--I get my vistide here in flyover land--) to do a three-month check-in.

 

[hvs]

Ross - If you don't mind me asking. What dosage are you at on the Vistide? And, did you titrate up to this level from an initial starting dosage?

Sorry, August, I don't know my dosage. I also down lots of probenicid to keep it in my system and buffer my kidneys. Vistide wants to destroy kidneys.

 

[hvs]

HVS: I return to see Dr Peterson this Monday for another round of Vistide. I had my blood drawn for XMRV almost a month ago, but the results have been a little delayed. Not sure how the results will affect my treatment, but I'm sure it will. How about you? Have you tested yet? How did you get Dr Peterson to let you do your Vistide there? Did you have to get your doc to oversee it?

Maybe you'll get xmrv results on Monday, Ross. That'd sure be interesting. Please do report on how Dr. P changes the game plan.

When I go out the week after next I will no doubt get the test.

Luckily, there's a doc in the family who is very educated about CFS. He is signing the nursing order for the infusion, while Dr. P is prescribing it. (The nursing order needed to be signed by an in-state doc.) Peterson takes ultimate responsibility.

My internist would not sign the order. She needed to defer to the ID docs in her hospital system. I went there and the ID doc didn't know CFS from her behind.

 

[anne]

Dunno, h, I think she was very well-acquainted with her behind.

 

[hvs]

End of three months on vistide. Fabulous results. Starting next three-month course.

Of particular interest will be my treadmill test results. We'll see how well my aerobic metabolism has come back. I'll chime in here when I get them.

 

[Hysterical Woman]

hvs

End of three months on vistide. Fabulous results. Starting next three-month course.

Of particular interest will be my treadmill test results. We'll see how well my aerobic metabolism has come back. I'll chime in here when I get them.

Very exciting, hvs, please let us know what happens with the aerobic metabolism test!

Good luck,

Maxine

 

[hvs]

Got the treadmill/VO2 max results. Astounding. They almost doubled from 15 (technically disabled for a person with my profile) to 28 VO2 max. I still go into anaerobic metabolism early, but I have a vastly vastly better ability to metabolize oxygen. A healthy person of my profile is expected to be at 44, so there's a way to go. But overall, this is huge progress. Metabolism's working!

 

[jenbooks]

That's great to hear.

 

[Kendra]

I felt no side effects from Vistide AT ALL......I only began to feel better after a few treatments.

I'm back from Treatment # 17......we have decided to continue treatments based on the fact that I am still improving and my follow up immune labs show Dramatic improvements (which I will gladly share in detail if anyone is interested)

Ross,
You mentioned that Dr. Peterson helped you get Medicare to cover the Vistide -- does he participate in Medicare w/regard to office visits, etc?

It's my understanding that if docs don't participate (in Medicare) they can't even order tests thru Medicare. (But I have gotten RX filled thru Part D that were written by non-participating docs (all my docs have dropped out of Medicare over the past few years).

I tested postive for CMV several years ago and felt much better on oral Cytovene (gangciclovir) for a few months. But after stopping and re-starting some months later I didn't notice any benefit (back when there was no Medicare Part D and it cost $600+ a month).

Kendra
PS: I'm using Quick reply so I don't know where this will go - to the board or to you privately. I rarely post to the boards so I apologize if I goof this up....

 

[cfsme23]

Ross - hope you don't mind me asking you a couple questions as I have sent my paperwork off to Dr P to get on his waiting list hopefully. How far up the activity scale do you feel the Vistide has moved you and have u discussed what you will be doing treatment wise once you get to the end of the Vistide?

 

[acer2000]

Thats interesting that your immune panels are going back to normal on Vistide. I guess if you were also xmrv positive, that would mean the CMV was most likely the cause of the "immune activation" and not the XMRV, since you haven't treated XMRV. Unless of course vistide somehow treats XMRV unknowingly...

 

[jenbooks]

Ross

I hope you make progress with your next step, whether antibiotics or anti-babesial drugs. GOOD LUCK!!!

 

[Kati]

Ross, I am curious id you got tested for lyme because you had the rash or just another thing to rule out?

And do you know how long will be the treatment for that? Is it oral antibiotics?

Thanks! I have phoned IGENEX and they are sending me the testing kit for LYME- I have done lots of cyclo-touring in the last few years (since 1999 with camping in the woods and in tick country. I don't remember exactly the donut type of rash, but always a possibility to rule out I guess.

Good luck and let us know how XMRV results go- I wonder why they take so long to get the results?