ME/CFS, Valcyte, and me: Third time lucky

In this post, I describe my improvement—and problems—while on valganciclovir, aka Valcyte. Before deciding to take this powerful but dangerous medication, I read a lot of other patients’ accounts, and I hope that my experience will help others in the same way.

Do herpes viruses cause or contribute to ME/CFS? This question continues to roil researchers, medical specialists, and patients. My evolving belief is that they do contribute in some but not all cases—and certainly in mine. One reason reason for this belief is my experience on antivirals, especially Valcyte.

The big picture

I’ve taken valganciclovir three times and had three different results, but each time at least one symptom-trigger disappeared. Under my current regimen, I’m able to teach a college course, which is a wonderful resurrection.

My current regimen is to take only one pill (450 mg) per day and never more. During the initial couple of months, when valganciclovir was knocking out cells willy-nilly, I didn’t take it on days when I felt that it (as opposed to ME/CFS) was making me weak. But I never skipped more than one day.

The details

I risked taking valganciclovir in part because I knew I had problems with recurring herpes infections years before I developed ME/CFS. After colds, I’d get dizzy for weeks, and valacyclovir (Valtrex) worked as a treatment against this “vestibular neuronitis.” (By the way, I’ve never had herpes simplex 2 or cytomegalovirus, but I have antibodies to the rest.)

The first time I was prescribed Valcyte, in 2014, I actually was healthier than I am now. I had been taking valacyclovir and doing better on it—but not well enough. The specialist said that Valcyte might take me from 50 percent (or whatever) to 90, and, were it not for bad decisions and worse luck, it might have. The six-month regimen included an induction period of three weeks when I took two 450-mg pills twice a day; the rest of the time I took two pills once a day.

For the first week or so, I felt wonderful. It wrought a huge and immediate improvement, and I even stupidly went on a long hike. Also, an extreme ache that floods my torso stopped appearing after particular bowel movements—permanently! But Valcyte knocks out a lot of infected immune cells and possibly others in the blood stream, and soon I started feeling progressively weaker. This, combined with my still-stupid attempts to engage in too much activity, led me to decline precipitously over the first couple of months. Some days I had trouble walking even short distances.

But after a couple of months my body replenished the cells that the drug had eliminated, and I started to feel stronger. I still overdid things as soon as I felt much strength, which led to a boom-and-bust cycle, but I could reliably go grocery shopping and sometimes go on short, slow, and flat bike rides.

Then disaster struck. I switched from the name-brand drug to the newly approved generic and had an allergic reaction. My symptoms included truly incessant burping; itchy, painful hives across my torso; and the worst weakness I’d felt while on Valcyte. Amazingly, I thought at first that maybe these were signs that the generic was reaching even more areas than the name-brand, and it took me a month to get back on the name-brand. But the damage was done, and any gains from the first three months were lost.

At the end of six months, my only improvement was that the trigger during bowel movements (mentioned above) was eliminated, and it took months for the burping and hives to die down.

The second time was different. A cyst on my back had gotten infected, and it was as if I had gotten a new case of ME/CFS in addition to the existing one. Sitting up could wear me out, and a few times I was immobile. Plus, I’d developed a bizarre and excruciating rash  that exactly matched a description of “inverse pytiriasis rosea,” which is thought to be caused by HHV-6.

The same specialist put me on the same regimen, with name-brand Valcyte, along with 3 or 4 mg of famciclovir (Famvir) per day. This time I didn’t have a wonderful period in the first week. But the debilitating ache in my torso immediately lost another trigger: breakfast stopped causing it. And the rash gradually faded away. Unfortunately, I again was weakened by the loss of infected cells in my bloodstream. As I regenerated them, I grew stronger than before I had started valganciclovir but not stronger than before my back had gotten infected.

Then semi-disaster struck again. After about 2 1/2 months, I started having difficulty breathing whenever I went for a walk. It pretty clearly was anemia from the Valcyte, because it ended once I stopped taking the drug. I needed to move to another country in a few weeks, so I ended my regimen then.

After three months, I was much healthier than when I’d started on valganciclovir. Mostly I could go for slow but extended walks on flat terrain. Unfortunately, moving in to a new apartment and constructing some IKEA furniture soon sent me back to being largely home-bound.

The third time has been the charm. I’m five months in, and my experience has been much better. I think that this is due to three factors: better dosing, smarter management of my activity, and better treatment of other issues.

Before I re-started on Valcyte, my new specialist identified and attacked other infections and autoimmune problems. And I took heavy doses of valacyclovir. At the same time, I  began testing different supplements. My ME/CFS (and IBS) improved a moderate amount each time, but I still couldn’t handle a volunteer gig answering the phone for four hours once a week.

My specialist had been bugging me to try Valcyte again. For example, she told me that there was general agreement at the ME/CFS clinicians’ summit that the most effective treatment was valganciclovir. Based on my previous experience, I didn’t think it’d work for me, but I had run out of other options, and I was desperate. I had quite a few pills left over, so I started taking them on my own at the half-dose regimen described above. It worked wonderfully, so my specialist prescribed more.

Why this dosage? 1) I read research articles in medical journals that found it to be safe and effective after organ transplants. 2) The worst part of a typical experience on Valcyte is the rapid loss of infected cells during the first two months. I thought (correctly) that it wouldn’t be so debilitating if I put this process into ‘slow motion’ by avoiding an induction period and reducing the regular dose. 3) I thought that this lower dose would delay the anemia that I suffered after 2 1/2 months during my second course of Valcyte. 4) I was taking Valcyte as a last, desperate shot at feeling stronger, so I refused to take it on days when I felt weaker from it. 5) Most importantly, I and some others have felt much healthier upon first taking Valcyte, so that means that this feeling is possible! Thus, prolonging the conditions of this initial period, when the bloodstream isn’t carrying large amounts of Valcyte, might sustain this feeling.

Results: Once again, something related to my digestion got much better overnight. In this case, my IBS has become much, much less limiting as long as I take a regular, multi-strain probiotic; before, I was dependent on a second, groovy probiotic from Japan and still not as healthy. More importantly, some of the core symptoms of my ME/CFS markedly improved overnight and have continued to do so. These include:

• Lower heart rate while performing my usual activities
• Able to tolerate activities that are longer or more intense (that is, with a higher heart rate) without triggering post-exertional malaise (PEM)
• Shorter PEM
• Better able to handle temperature extremes
• Sleeping less

Unfortunately, I’m not back to normal for any of these issues, and I have plenty of symptoms that didn’t improve at all.

I’ve tried to reduce the numerous supplements that I take, but unfortunately they’re still an important part of what gets me up and moving. So Valcyte by itself hasn’t come close to making me fully healthy—nor has it in concert with the other things I take. But I’ve gone from maybe 25 percent capacity to 50, from being warehoused to working a little, and that makes an enormous difference to me.

By the way: after my name-brand pills ran out, I tried a different brand of generic valganciclovir, and this time I haven’t had an allergic reaction. My digestion got a little worse, but, hey, the generic costs thousands of dollars less. Also, my specialist says that valganciclovir actually works broadly against many types of herpes virus, so there’s no need to concurrently take Famvir or Valtrex.

Extra comments

Why does Valcyte work against ME/CFS? I’ve read comments by researchers suggesting that it’s effective against ME/CFS solely because it reduces microglial inflammation. I strongly doubt this: I’ve tried other drugs, such as minocycline, that are reported to have the same anti-inflammatory effect, and they haven’t improved my health at all. Instead, I think that the obvious interpretation is the correct one: some people’s ME/CFS is exacerbated (but not caused) by the slightest reactivation of one or more varieties of herpes, which valganciclovir fights effectively.

Why doesn’t it fully solve the problem or even help some people? I believe that there must be a more fundamental problem—one that over-reacts to other stressors, too, and that limits people with ME/CFS even when stressors are basically absent.

Timing of effect: Dr. Willy Eriksen has expressed doubt that Valcyte would have an immediate effect. My experience has directly contradicted this, twice.