My viral antibody tests were positive for HHV-6 and negative for CMV (unusual for someone with children she said). She couldn't find my Epstein-Barr Virus results while we were on the phone (though I've had EBV tested several times during the past 5 years with normal or borderline results).
Then she reviewed my immune system test results. My immunoglobulin IgG was low and my Natural Killer (NK) cell function was in the low-normal range. She said the lab listed "normal" as 3 and up; my NK function was 17. She said a healthy person should have a NK function in the 50-60 range, so she'd like to bring mine up a bit. I suspect that some of my past efforts to improve my immune system function have helped to keep my results from being too low.
Next, we discussed treatments. At first, she assumed I'd go back on Valcyte, since I'd been on it before and had asked about it during my visit. However, I've been feeling a bit nervous about the side effects and potential risks of Valcyte, so I asked Dr. Levine a lot of questions about risks and benefits.
She said she hasn't seen the same kind of dramatic results that Dr. Montoya at Stanford reported from his initial studies (she's talked to him extensively about his studies and her patients on Valcyte). Some of the reports I've read have emphasized that Dr. Montoya's Valcyte patients all had very high levels of HHV-6 and EBV in their blood. Dr. Levine said she currently has 7 CFS patients on Valcyte and none has experienced lasting improvements. One improved initially but then felt worse again (typical unpredictable CFS, right?), and another recently quit taking Valcyte. In addition, she confirmed the significant risks of Valcyte that my own doctor and I had discussed previously. It definitely affects bone marrow and may have a theoretical increased cancer risk (hard to say, since there's not enough data on CFS patients yet).
Finally, she suggested we keep Valcyte on hold as a second-line treatment to try later if other treatments don't work. Instead, she suggested a three-part approach for me, adding a new treatment on each month if I seem to tolerate them well:
- Valtrex, probably for 6 months. Valtrex is another anti-viral, well-known for its use against more common types of herpes virus. It has no side effects and none of the serious risks of Valcyte and is far less expensive than Valcyte.
- After 4-6 weeks, add a tiny dose of naltrexone to boost NK cell function.
- If those are well-tolerated after another month, add weekly injections of gammaglobulin to help increase immunoglobulin.
What does this all mean for me? I think I'm relieved to have other options. I was getting really nervous about Valcyte, especially at such high doses and in the absence of very high blood levels of HHV-6 and EBV. I was also starting to feel stressed looking at the calendar and wondering how I'd handle two months of getting much worse (as often happens initially on Valcyte). I like the plan to try something milder first. At the same time, I've had to admit to myself a bit of disappointment that there's no miracle cure (yet!). The initial news of those 22 patients who improved dramatically on Valcyte was (and still is) pretty exciting, and I may have gotten my hopes up.
I think all of this emphasizes what many CFS experts have been saying for years - that there are likely subsets of CFS, initiated by different triggers and probably responsive to different treatments. I still feel very, very optimistic about the terrific progress in CFS research in the past few years; Valcyte is likely just one of several breakthroughs we'll hear about in the near future.
I'm glad that I went to see Dr. Levine. Being someone who likes to deal with hard data and scientific fact, I am thrilled to have some real information on what's going on in my body, even if the picture is not yet complete. There is nothing more frustrating in the early days of CFS than all of those lab tests that show everything is "normal" while you keep suffering. I think I'll take my boys up to see Dr. Levine during the summer to see what their blood tests show.
Whew, that's enough for today. I've been in a fairly bad crash the past two days. I'll let you know how things go with this new treatment plan.