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.

Update on my anti-viral treatment

Sorry to be so silent lately. I've been very, very sick. I've probably spent less than 15 minutes total on the computer in the past week, just to quickly check for urgent e-mails. My current rough state might be good news, though.

Two weeks ago, I had a follow-up phone consultation with Dr. Levine. In case you're new to my blog, she's the doctor who tested me for various viruses and for immune system function back in March. She found that I had higher than normal levels of HHV-6 (though my EBV and CMV levels were normal), and we decided I would try Valtrex, an anti-viral medication that works against HHV-6 but is much less toxic than Valcyte (which is effective against both HHV-6 and EBV).

So, I've been taking a low dose (500 mg/day) of Valtrex for the past four months. I have had some mild improvements during that time. The improvement has been subtle, difficult to notice on a day-to-day basis, but slow and steady when I look back at my records (I note how I feel each day, on a 1 to 5 scale, on a calendar). Also, both my husband and my mother commented to me recently that I seemed "more like myself" lately.

When I spoke to the doctor two weeks ago, we decided that I would try increasing the dose since the Valtrex seems to be working and I'm tolerating it OK. So, I doubled the dose to 1000 mg/day. Ever since then, I've had severe CFS symptoms almost constantly - sore throat, aches, exhaustion, sleep dysfunction - all my "normal" symptoms but as bad as my worst days every day with very low stamina. I've spent most of the past week in bed or on the couch (thankfully, my kids have been with their grandparents this week).

The good news (I hope) is that this characteristic worsening of symptoms on an anti-viral medication is supposed to be a good sign. Everyone who's taken Valcyte for CFS has reported the same sort of initial reaction. The theory is that this is a "herx" reaction, a temporary worsening caused by the drug killing off lots of virus in cells and tissues that then floods the bloodstream, triggering the typical CFS over-reaction of the immune system.

Despite my incapacitation, my spirits have been good. I'm hoping that this means that the drug is working for me and that I'll experience some improvement once I get past this stage. I'm sure things will get much more difficult for me tomorrow, when my kids return home. I love them and miss them, but I've really needed this complete quiet and peace this week.

I'll try to keep you posted on my progress and plan to post some general information on viruses, anti-virals, and CFS tomorrow. That's more than enough for today!

I'm Not As Well As I Look

We finally got our internet connection fixed! Now I can start working through all those e-mails from vacation.

It's been a very rough week. Once again (will I never learn??), I had commited to much more than I could handle.

For starters, I did too much yard work last weekend, in a desperate effort to make our entrance presentable for my neighbors who would be coming over this week for our book group discussion. Our yard is like a jungle right now, and almost all of our neighbors have professional landscapers. I just wanted to clear out the weeds along our front walk and maybe plant a few flowers. I spent several hours Saturday (with breaks!) weeding, trying to do most of it while sitting. I woke up Sunday morning and couldn't bend over without excruciating pain. I guess it's a muscle spasm in my back. I spent all day on the heating pad and am still in a fair amount of pain several days later.

Monday, I was scheduled to teach a training course in the morning, as part of some consulting work. I hadn't done any teaching since getting CFIDS, but I thought I could handle a half-day. The combination of the back pain and being on my feet for several hours left me severely crashed by Monday evening. Thank goodness my client asked to postpone Tuesday's work.

I was supposed to host my book group on Wednesday evening (see what I mean about committing to too much?). By Wednesday, I was still badly crashed with aches, sore throat, the works. I had to cancel at the last-minute. I was both embarrassed and relieved when I finally sent the e-mail to my neighbors to cancel. A couple of them responded very compassionately, assuring me not to worry and offering to host instead. The rest were just silent.

I feel as though I've come out of the closet, like my condition has been revealed. I think they all knew I have a chronic illness, but I doubt any of them know how debilitated I am. Who could possibly understand CFIDS without living with it? In my e-mail, I admitted that I shouldn't have offered to host in the first place, that it was more than I could typically handle. I knew that when I volunteered, but I wanted to do my part. Besides, I was embarrassed to be a part of the group without taking my turn like everyone else.

How can you possibly convey to people how debilitating "normal", everyday activities are for someone with CFIDS? I feel as if we live in our own little world here in our house. None of our neighbors could possibly imagine what it's like here. I worry that people look at our weed-filled yard and messy house and just think we're lazy. But you can't go around telling everyone how sick you are. It would make them and me feel uncomfortable, and I really don't want to be pitied, just understood. Sometimes I wish I could wear a sign around my neck that would explain exactly what CFIDs is and what my life is like, something that would provide instant understanding. Or maybe just something like, "I'm not as well as I look."

Ah, well. Life goes on, right? Maybe this week's events, while embarrassing and disappointing, will help my neighbors to understand just a little better. I'm feeling a little better today, continuing my slow recovery out of this latest crash.

Back Home

We returned home from vacation earlier this week. We had a good trip and especially enjoyed our journey out to Oklahoma, with some wonderful stops along the way. Our time in Oklahoma was a bit more stressful than we had planned. We found my husband's parents in worse shape than we had realized and spent our time there helping them to get back on their feet - doctors' visits, shopping, cooking, etc. In fact, my husband flew back out there yesterday for his mom's back surgery. She broke a vertebra in a recent fall and has been in constant pain, so we're hoping this procedure will help her.

So, we're back home, but life has not yet returned to "normal" (whatever that is!). I have two half-days of consulting work next week, so I'm trying to save up some energy for that, while I work to unpack, clean up, and take care of the kids. Both boys are doing well - thank goodness for Florinef! They're taking full advantage of summer, running around with friends, completely carefree. I am so grateful that OI treatment has worked so well for them, to allow them to play like normal kids. In fact, Craig has been insisting that he no longer has CFIDS; since starting Florinef this spring, his stamina has been incredible.

I have over 200 e-mail messages and am having trouble with my internet connection, so please be patient if you've send me an e-mail. I'm way behind and probably won't catch up until I get past that consulting work next week. I need to help pay for our vacation!

I'll try to post more information and an update on my anti-viral treatment soon (not much new to report, though). Hope everyone is enjoying a nice summer.