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This is my fear and in fact, in my 7th month, describes how I'm feeling. I don't know what the heck to do after this (since i moved here to the US to get Amp).
The valcyte is definately helping, pre valcyte i was a 6 out of 10 on dr lerners scale and now around the 8 mark.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?
For the first three months, I was on 400mg, the next three, 300mg. I was showing signs of bone marrow suppression so Dr. Klimas dropped me to 200mg for the remaining six months ( I will finish on Oct. 5th). I definitely do not feel that Ampligen works well on EBV and HHV6 but it does help in other ways but I'm not sure how.
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.
Thanks
This is my fear and in fact, in my 7th month, describes how I'm feeling. I don't know what the heck to do after this (since i moved here to the US to get Amp).
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.
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.
Did Enlander to more viral testing on you for hhv6 etc?
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.
That is excellent news! I am eagerly anticipating that publication. It could make a big difference for a number of patients.
This is my fear and in fact, in my 7th month, describes how I'm feeling. I don't know what the heck to do after this (since i moved here to the US to get Amp).
http://www.magicpharma.comI 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.
cheers!!!