Comments on: June 2008 Valcyte Study Results

By: David

David — Sun, 08 May 2011 15:49:05 +0000

I have CFS although it has come and gone over the course of 7 years. I have have only recently found out about Valcyte and talked my doctor into letting me try it when I was in the middle of a CFS attack. I improved within 3 days, I continued taking it for another week and them stopped. I went into decline within a few days. I started taking it again and once again improved. I’ve now been taking it for over 2 months with no CFS symptoms. I am convinced that the source of my CFS is viral. What I’m not sure of is if Valcyte kills the virus or is just holding it in check. I am going to cut my dose in half for a while and then stop to see if the symtoms return.

By: Patricia Green

Patricia Green — Tue, 01 Sep 2009 18:55:01 +0000

Mary Jean O’leary,

You may have had a severe Herxheimer reaction. In other words, the medication worked, but it worked too well. It wiped out virus faster than your lymphatic system could process and eliminate it. The build up of toxicity is what made you sicker if this theory is correct.

Since CFIDS patients have major problems with oxidation, free radicals, and major difficulties unloading their toxins, a Herxheimer reaction would be quite devestating.

My advice to you is to work on detoxing. If my theory is wrong, it won’t hurt you, you will still feel better because CFIDS patients have a builf up of toxicity anyway.

Hope this helps.

Trish

By: Deborah Waroff

Deborah Waroff — Fri, 26 Jun 2009 01:25:40 +0000

I took Valcyte for ME/CFS under the supervision of Dr.Susan Levine in New York from approximately September 2007 to July 2008. I had shown high titres of HHV6 and Epstein Barr antibodies.
The treatment was initially quite successful. About two to three weeks after first taking the drug I started to experience significant increase in energy and decrease in feelings of exhaustion and unwellness. I increased my hours of work, my walking, and my ability to carry out food preparation.
After about six months the increase I had experienced in my energy envelope began to fall off. I think of it in terms of how many good functional hours of being capable of movement without becoming symptomatic that I experienced in a day. By March I was down to four or five. By May I was down to two or three. In June I heard the results of Dr.Montoya’s equivocal report at the HHV6 satellite conference in Baltimore and decided I should probably quit the drug. I quit in July.
Boy was I sorry. I went from 2-3 functional hours a day to about zero. When you are at zero 2-3 looks pretty good in hindsight. I began to take the drug again but did not experience any improvement after four weeks and quit altogether.
This took a great deal out of my bank account, though I obtained the drug at 1/2 price from Canada.
My verdict is Valcyte can work but only for a while and not well enough long enough to put a great deal of hope on it for the ME/CFS community. But perhaps something worthwhile can be learned by studying its mechanisms.

By: owyheemedical

owyheemedical — Sat, 07 Feb 2009 05:26:38 +0000

I am so sorry you got the cold shoulder treatment from those you worked with. I have CFIFS too and I than you for your service. But in repect to you, as a pateient, they need to hear about your experience and help you with it-there are things to be learned

By: mary jean o'leary

mary jean o'leary — Thu, 08 Jan 2009 02:03:07 +0000

I have a severely dissableling case of cfids ( 23 years). A Professor of Infectious Disease at Oregon Health Science University prescribed Valcyte for 8 1/2 months. My symptoms worsened 10 fold! I have not taken the drug for 6 months. I have not recovered from the worsened conditioned! Valcyte has made my more disabled and I thought it couldn’t get any worse! The sad thing is I can’t prove it to the doctors that tend not to beleive patients with severe symptoms.