Friday, April 13, 2007

Test Results and Next Steps

Finally! I spoke with Dr. Levine for a half hour today to review my blood test results and discuss treatment options.

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:

  1. 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.
  2. After 4-6 weeks, add a tiny dose of naltrexone to boost NK cell function.
  3. If those are well-tolerated after another month, add weekly injections of gammaglobulin to help increase immunoglobulin.
It's a two-pronged approach to eliminate HHV-6 while also helping to improve immune system function so that I might be better able to fight off infections on my own. Dr. Levine emphasized that this isn't a cure, but she's had patients improve somewhat, to "a new plateau level," as she put it. I said I'd welcome any level of improvement.

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.

8 comments:

  1. Thanks for posting your results and the new game plan. Hope it goes well. Cheers!
    (Sorry, my daughter was signed in the first time.) Sherry

    ReplyDelete
  2. Fascinating post, Sue! I'm very glad you're posting about you're experience with Valcyte and Valtrex. It can be so frustrating reading articles, like the one about Dr. Montoya's study in which his patients pretty much recovered and think is it here? has the cure finally arrived only to find that there's a lot more to the story. Thanks for telling the rest of the story, as it were. :)

    ReplyDelete
  3. Jacki4:34 AM

    Good luck with the Valtrex, I notice you don't actually say what triggered your ME. Your EBV is borderline, so perhaps you havn't had Glandular fever? Have you or youe family had Chicken pox recently?

    ReplyDelete
  4. Jacki -

    I have no idea what triggered my CFIDs to start. It began very abruptly, after 36 years of excellent health, so I guess it was some mystery virus. I had mono (EBV) when I was 13, and my kids were both vaccinated against chicken pox. When I first got sick, no one else in the house had any sort of viral symptoms. One of many mysteries...

    Thanks for reading and commenting -

    Sue

    ReplyDelete
  5. Hi,

    I am currently being treated at Stanford on Valcyte. I have been on it for 4 months now and I am at times about 30% better. My EBV titers were very very high and my HHV-6 were also high. It is a very very slow process according to Dr. Montoya. I would be happy to discuss my experience with the drug and treatment. I am also a physician and I have a very good understanding of the treatment. You can contact me at jerrysobel@gmail.com

    ReplyDelete
  6. Anonymous2:15 PM

    Have you seen this web site?

    http://www.cfsviraltreatment.com/clinical_patient_study/index.html

    ReplyDelete
  7. Thank you so much for your post; I wish I had found it when you first posted it last year. You see, for years I have suffered with CFIDS off and on (mostly on), with symptoms much, much worse with even the slightest stress. I also was diagnosed with fibromyalgia and I can tell the difference between the two, although of course some experts now say they are one and the same (could be, except I can tell that my fibro is more painful and the CFS more of a "I'm-drained-of-all-my-blood,-bones-and-muscle" sensation. When tested, I had/have excessively high levels of EBV (even was diagnosed with mono at 13 and then in my late 20s along with having full-blow chicken pox at least twice), CMV, HHV-6 and other antibodies in my blood, at points high enough where I was offered money for my blood plasma to be used in research and/or a cure. I also had/have tested way below normal on IgG, IgM, IgE, etc., in my blood. I have been on various courses of Valtrex over the years, a very high dose for twice a day and while it did eliminate profuse perspiration episodes I had at night, it didn't do a thing to increase my energy. In fact, nothing has seemed to work as well as the Valcyte, which I only just started yesterday (Oct. 13, 2008). I already seem to have more energy, and today have managed to "over-do" (in terms of the pain I have from the fibro) and accomplish more things this morning than I have in weeks, months and/or years. On the other hand, I am also using the Fatigued to Fantastic Energy Enfusion (I may have spelled that incorrectly) twice a day, and increased my Vitamins D and CoQ10 (I'd eat live scorpions if someone said it would cure me of this fibro and CFS, so I don't fear later cancer to live a life now that I've missed out on for so very long). In any case, I just wanted to let you know my experience on Valtrex. By the way, even on Valtrex, despite no severe night sweats any longer, I still ran fevers late in the day. Do you experience that?

    ReplyDelete
  8. Kat, I know your post is 3 years old, but if you get this, please reply. Or directly to me at lisesheehan@yahoo.com. I have just started valcyte and feel immediately better also. This is contrary to everything I've read. Everybody else says they get worse before for months. Well this time I decided to start slowly and I took 1/2 a pill 2x for a day, then 1 pill, 2x. And I'm going to stay there a few days. My big question to you is did you continue to feel better? How long did you take it? Did you relapse after? I really wish there was a website with peoples long term experiences of this drug. Thanks if I hear from you!

    ReplyDelete