Tuesday, July 31, 2007

CFS and Valcyte

Over the past few months, I've received dozens of e-mails from all over the world, asking me about Valcyte. I've gotten the impression that most of these people have read just one of my old blog entries, from this winter when I briefly tried Valcyte. I was curious about this onslaught of questions, so I tried typing "CFS" and "Valcyte" into Yahoo and guess what? One of my blog entries from March was the very first search result! I'm certainly no expert on Valcyte with my limited experience, so I thought it was time to supply some updated information and references. Let's hope this entry takes the place of that old one in the search engines!

For starters, CFS has long been thought to have some connection with a handful of viruses. Research in the past few years has proven this connection. It has been confirmed now that about 12% of the population that catches certain infections goes on to develop CFS. Mononucleosis (often caused by the Epstein-Barr virus and known sometimes as glandular fever) and Lyme disease are two of these infections known to trigger CFS. Additional research has shown that some of us are genetically predisposed to develop CFS (lucky us).

Dr. Bell has an excellent article that summarizes the CFS viral connection.

More recently, the entire CFS community was astounded by the results of a study using Valcyte to treat CFS. Dr. Jose Montoya of Stanford University treated 25 of his worst CFS patients with Valcyte and, amazingly, 23 of them improved significantly (it even sounds like some of them are almost completely recovered). Dr. Montoya is now conducting a full placebo-controlled trial of Valcyte for another 100 CFS patients. Some important facts to note about these studies:
  • Patients who improved had abrupt-onset CFS and had significantly high levels of Epstein-Barr virus (EBV) and Human Herpes Virus-6 (HHV-6) in their blood.
  • Most, if not all, patients who improved first experienced a severe worsening of their symptoms that lasted from a few weeks to many months.
  • CFS patients were treated with Valcyte for a minimum of 6 months, some for much longer.
  • Valcyte is a fairly toxic medication, with some serious risks associated with it.
In addition to Valcyte, there are several other anti-viral medications (some with fewer risks than Valcyte) that have had some success in CFS patients, depending on which viruses are present. Famvir and Valtrex are two of these medications.

Here are some references for more information:

Dr. Podell, in Somerset, NJ, is also treating CFS patients with Valcyte. He's written an excellent summary of CFS and Valcyte, including many links to additional resources as well as links to Dr. Montoya's information.

Dr. Martin Lerner, in Michigan, has been treating CFS patients with a variety of anti-viral medications, including Valcyte, Valtrex, and Famvir, for several years. His website includes detailed information on his trials and treatments.

The HHV-6 Foundation has some excellent information on HHV-6 infection in CFS.

There is more good information at the website for Viral Induced CNS Dysfunction, including an excellent description about testing for EBV and HHV-6.

The CFS Phoenix Newsletter, a wonderful resource for keeping up-to-date on the latest in CFS research, has a detailed article on the role of HHV-6 in CFS.

Finally, if you want to hear about other people's experiences with Valcyte and other anti-virals, check out the message boards at ProHealth Immune Support. Registration is free, and there are many message threads on these topics. Just click on Message Boards and take a moment to register.

I hope that these references help those of you interested in learning more about treating CFS with anti-virals like Valcyte. These are the websites that I've turned to in the past 6 months. As for myself, I'll continue to write here at my blog about my own experiences with Valtrex.


Anonymous said...

Not quite accurate info on Valcyte studies.

"The total number of patients treated today is 30, 26 had "elevated titers" and 4 had "low titers". Of the 26 patients with "elevated titers", 25 have had a dramatic recovery. Of the 4 patients with "low titers", none have responded."

And the current study will have 30 patients.

"All patients will be given the active drug (20 patients) or placebo (10 patients) for 6 months and followed for an additional 3 months."


Sue Jackson said...

Thanks for the clarification and additional link.

This is exactly why I posted the links and information - I'm no expert! It makes me a little nervous that so many people are coming to me for information about Valcyte.

Hopefully, the links I posted (plus yours) will provide the kind of real, accurate information that seems so desperately needed in the CFS community.

Thanks for taking the time to post the correct stats.


Anonymous said...

Hi Sue,

My daugher desi is a valcyte patient and is journaling her experiences while on valcyte. www.desivalcyte.blogspot.com
Your web references are excellent. Do you mind if we link to your July post? Or we could just copy the websites? Thanks for your information. Exellent! I think that writing about your experiences is therapudic. I know that Desi's blog has helped in educating her friends and family. She has also gotten support from other cfids patients. It has been a good thing. Good luck on your anti-viral Valtrex!


Sue Jackson said...

Hi, Yvette -

Thanks for taking the time to leave your comments. Yes, please feel free to link to this entry or copy the links - whatever works best for you. I'll take a look at your daughter's blog when I get a minute. It's great that she's found the blogging helpful...and really wonderful that you're so involved and supportive! I hope Valcyte helps her.


carlitos said...

Well, the good thing, which is what I wanted to share with you is that In September 2007 I started a protocol with homeopatic antivirals from LaboLife EBV and CMV and I measured my serology on these viruses before and after the treatment, and here are the results:

June 2008 results (9 months of treatment with Labolife):

IgM ANTI V.C.A. EBV; c.arb.(0 1) +POSITIVE (Titer 1/10) (same as 9 months ago, the reference value for this lab was 1/10 instead of 1/20)
IgG ANTI V.C.A. EBV; c.arb.(0 1) +POSITIVE (Titer 1/80) (much lower now, 9 months ago was it was 1/640 with the same lab)
IgG ANTI E.B.N.A. EBV; c.arb(0 1)+POSITIVE (Titer 1/160) (much lower now,9 months ago was it was 1/320 with the same lab)
IgG ANTI E.A. EBV; -NEGATIVE 1/10 (slightly higher, irrelevant though 1/5)

Srm-ANTIBODIES IgM ANTI V.C.A. CMV; c.arb.(0,1,2) -NEGATIVE (Titer 0,19) (same as 9 months ago)
Srm-ANTIBODIES IgG ANTI V.C.A. CMV; c.arb.(CMV.O.M.S) +POSITIVE (Titer 160) (much lower now, 9 months ago was it was 233 with the same lab)


I have been able to lower the viral load to almost normal levels, the only "but" is the IgM of my EBV that still remains slighly positive, but the titer of the IgG's is now normalized, and this shows also in my symptoms, I can do sports again and even sweet in the gym!!! and I do not have a constant nausea feeling as before... If one of your patients main problems is the serology of these viruses, I guess you should give it a go. It did work on me, and besides is safe non toxic treatment, like could be Valcyte, Ampligen, Zelitrex, etc...
I still have problems with my gut, flora, IBS, etc, but my quality of life has improved significantly. I hope this can be of help for all of you.

All the best