Discussion in 'Latest ME/CFS Research' started by heapsreal, Aug 31, 2012.
nielk, i will tell you but not today, I am really sick and bedbound right now
I wonder if adding an antiviral while on ampligen would work???
heapsreal, this is what frustrates me!!! I can't!!!!! Enlander cannot prescribe me any AVs whatsoever as long as I'm getting Ampligen
how are you doing on valcyte+famvir?
The valcyte is definately helping, pre valcyte i was a 6 out of 10 on dr lerners scale and now around the 8 mark.
A bugger u cant use both, but its something to keep up your sleeve. Did Enlander to more viral testing on you for hhv6 etc?
Has Dr. Klimas mentioned anything about possibly putting you on antivirals for awhile. Valcyte is about the only one that will work on HHV-6. Andrea Whittmore was basically in the same situation as you are. If memory serves me correctly he lowered her Ampligen dosage and either started on Valcyte while taking low dose Ampligen or had her stop Ampligen for awhile and ran her through a course of Valcyte.
You might try emailing Dr. Peterson or the Whittmores to see if they will offer up any information especially if you explain that you feel like you are very close in your illness as Andrea was at one time. What do you have to loose!?!?
The odd thing is that this was about a year and half ago and I have not heard one peep of how Andrea is doing. If anyone finds out please post back and let us know.
I was on Valcyte in 2009 for six months and I found the drug most unpleasant with a lot of body pain and debilitation. I found no improvement at the end of that time.
Dr. Klimas will probably start me on Famvir for an extended period of time, at least a year, when the viral antibody reports are sent from the Univ. of Miami lab. They are currently having a problem there with some of their testing methods so there is a delay with certain tests. However, I did get the immune panel results back and there is no improvement in the viral activation numbers (CD4+CD38, CD8+CD38 etc.) after nine months on Ampligen. After six months, Hemispherx does not restrict the use of other immune modulating medicines. So, it may be part of future protocols to start patients on an antiviral medicine which specifically targets herpes viruses for the remaining six months and beyond.
Dr. Rey told me that she and Dr. Klimas, have had success putting their patients with reactivated herpes viruses back into latency using Famvir at low dose over a long period of time. When that is achieved, then a maintenance dose is used to preserve that state. Most patients are able to resume normal activities. Dr. Rey said that they will publish their findings and the protocol they are using when they move into their new clinic at Nova University. This perhaps is the best way forward for you. I'm going to try it anyway unless something better comes along.
That is excellent news! I am eagerly anticipating that publication. It could make a big difference for a number of patients.
That's great. She sounds like she has a plan. Personally I beleieve the Ampligen and then som anti-virals followed up by another round of Ampligen is going to be the course for a lot of people, including myself if I ever get finacially fit.
I hope that you will keep us posted on how things go because personal experiences are probably close to being the best information to lead others in the way they want to go.
Yes i think there is more to famvir then we really know about. Its only indicated for herpes 1 and 2 as well as shingles but i think it has some activity against all the herpes viruses and is gentler then valcyte, although at this stage i think valcyte maybe stronger. I think with me the famvir has helped alot and now the valcyte is cleaning up whats left over. I will be staying on famvir when i finish the valcyte thoguh.
Hi heaps, I just got my blood tests back today, HHV6 AB IGG was out of range 1:160 while IGM was in range 1:20, but these are the *exact* same results I had back in Jan. pre-Amp. The ONLY significant diff. in my labs between now and January, (i.e. after 6 mo's of Ampligen) is that my NK cell function has gone up from 4 to 22... because my labs have NEVER shown me to have a current HHV6 infection Dr E has never felt this a super important area to look at, and he told me today that he didn't feel repeating the stomach biopsy I did in Belgium with Prof de Meirleir would be useful, because he said it wasn't unusual for such biopsies to show the virus because it was "latent" (i am no scientist but this was the word he used in his attempt to explain to me), despite my last year's biopsy showing LOTS of it. (I did want to ask him what the point was of doing a biopsy then, but I was too brain-fogged to know how to phrase it in a polite way.)
Another thing. Dr E said he would *not* put me on valcyte unless my IGG got as high as 640 because that is when Montoya starts treating with valcyte. I am not on top of all this valcyte stuff so I don't know if this is very common knowledge that has only just come to my consciousness. But that is what Dr E says his policy is.
If your doc doesnt think igg is high enough for valcyte maybe he would consider famvir as its alot safer. I think that we may need to be on antivirals for along time until these viruses die out. Nk function improving is a good thing, but u have to remember that it will still take awhile for nk cells to beat back these viruses as they would be well established in us, especially if one has had cfs for a long time. U also positive for ebv as well??
You have been battling hard for awhile, i hope things start improving soon for you.
the other thing is that montoya uses a diff lab (and maybe diff critieria.. something about copy numbers) than most other docs.
Considering all the difficulties happening in this transition to Nova, I would not expect a publication in the near future. Perhaps some patients who are already on Famvir for a period of time would share with us their dosing protocol. I had heard it is something like 500mg--half a tablet in the morning and half at night. Continue that for two weeks then increase to one tablet every 12 hours as tolerated until further notice.
I was just checking some old posts and came across one by Heapseal in Australia who noted he (or she) has been taking Famvir 250mg twice a day for two years and has had an improvement in symptoms. The website given to obtain Famvir at a reasonable price is www.magicpharma.com
Hi Niall, doesnt the little viking avatar give it away im a guy, lol. Yes i have found magicpharma reliable although they seem to close the doors so to speak every few months stating they are on holidays and will accept orders in a couple of weeks, been caught out there a couple of timesnow i make sure i order earlier.I noticed improvements with 250mg twice a day, this works out to $75 a month. This dosing helped bring my elevated lymphocyte down to an almost normal level. The amercian docs seem to prescribe higher doses of famvir, i never really noticed a difference with higher doses as i used 500mg twice a day for a month but decided on 250mg twice a day as it seemed to do the job.
Hi all, I wonder about Order of things (as i wait for my docs to prescribe Famvir!):
Does Ampligen/imunovir etc HAVE to be before Antiviral (famvir/valcyte)? I was told this order Does matter; but I'm not sure why, if there is data to support this... Anyway, i'm hoping i'll be starting Famvir soon, and will post my progress (i've been waiting for a while now, hopefully it will be soon!)
My plan is Famvir then Imunovir....(but wondering if visa-versa really is better. I've just been scared off of immunomodulators because of a bad neuro reaction to Nexavir...But as Heaps has pointed out, Nexavir and Immunovir may work differently-- although goal of both of these is to raise my NK function--still, maybe imunovir wont' be so bad). Anyway, still wonder if order of immunomodulator and antiviral matters... Thoughts?
Take care all,
P.S. Heaps, the ladies might use viking avatars too! it says "warrior!" to me, which is gender-neutral
Sorry for not making the connection. Your diminutive warrior Norseman looks as though he has spent too much time in the longboats standing on those skinny little legs. He certainly doesn't seem to have CFS, though.
Let me ask you this, aside from a decrease in lymphocyte level, do you feel better physically? Do you have a sore throat or other symptoms and what is your activity level now as compared to before the Famvir?
famvir did improve my general symptoms, less fatigue, didnt crash as often or as hard, initally i was a 3 and after twelve months was 9 but changed to valtrex and drpped back down, it did pick me up to about a 6. If i stop i go backwards fast. Now have added valcyte and around a 7-8, it has helped , reduced many symptoms and rarely get lymph gland pains in neck, not cured but it has helped me to be able to work fulltime.
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