(Dr. Martin Lerner) Valcyte, Anyone gotten better?

Discussion in 'Fibromyalgia Main Forum' started by CFS23975Bob, Dec 26, 2010.

  1. CFS23975Bob

    CFS23975Bob New Member

    I have been diagnosed with HHV-6, with suspected LD. I have been on Valcyte for 20 months without any improvement. I am actually worse now than I was before I started taking Valcyte. I had a herxheimer reaction when I started but it never really stopped, I have been having kind of a 20 month herx. I wanted to know of anyone who has gotten well on Valcyte with some detail on how your treatment went, and also people who have been treated by Dr. Lerner for CFS. Has anyone felt this much worse for this long on AntiVirals and gotten better?
  2. heapsreal

    heapsreal New Member

    I have heard that some people didnt really start to recover until they stopped valcyte, i think they felt ill from the drug as well as the virus but once the virus is gone it then takes time to recover from the toxic effects of valcyte. I would look into stopping but switch over to famvir which is not very toxic at all and has some effect on hhv6, some have seen their hhv6 titres come down with just famvir. Im myself have made a good improvement on famvir and its has helped me with cmv reactivation. SO famvir i think is alot stronger and has a wider range of effect then is actually written about, plus its very safe to use long term and no die off type reactions. lyme can complicate things abit as well. But i think anyone who has had cfs for any length of time should also look into adrenal fatigue as i think it takes a beating from the stress of chronic viruses we have, test for dhea and saliva 4 times a day cortisol test, pregnenolone from what i have been reading up on and experiencing is quite helpful for adrenal fatigue and helping our bodies make its own cortisol and dhea which seems better then supplementing with cortisol and dhea, if that makes sense.

  3. TigerLilea

    TigerLilea Active Member

    It is much more likely that you have been having side-effects due to the Valcyte rather than a 20 month herx. A true herx usually only lasts about 24 hours.
  4. CFS23975Bob

    CFS23975Bob New Member

    Dr. Lerner advised me that a typical herx is 6-8weeks. Also he has been monitoring my CBC and liver enzymes and all the testing to determine if there is toxicity, they are all coming back normal. So I am showing no toxicity of any kind and I am feeling much worse. Not to say you are wrong and he is right, because at this point everyone's opinion seems to be just that; an opinion. Tough when you take something this long with no improvement and you also have no other real options, no one has treated me before I went to Dr. Lerner. Thanks for your response though!
  5. CFS23975Bob

    CFS23975Bob New Member

    You make a lot of good points, thanks for the response. I did go to fibroandfatigue before Lerner and they tested all the things you mentioned. DHEA normal, did have adrenal fatigue and they put me on cortisol, as well as all their other nutritional supplements and IV's. I didn't really show any response, positive or negative; so I left because the cost of treatment. I though famvir was for EBV, and Lerner hasn't put me on it so it's unlikely he will do it if I suggest it. If you take Valcyte and are much worse but aren't having toxicity; then I don't know what toxic effects there are to recover from if you discontinue. but you could be right I am just saying what Dr. told me.
  6. ethermom

    ethermom New Member

    Hi, I just posted on another board which you might find helpful:hhv6foundation.proboards101.com

    Will just paste my comments, in case they might be of help to you.

    My 22 yr old son has had CFS for 10 yrs now. He was very ill/bed-bound and missed two years of school; improved and was able to go back to school for about 1 1/2 years, then relapsed. We have the usual stories of cognitive/physical problems and unsuccessful treatments (aka medical suspicion, "learn to cope with it").

    After reading more about the infectious disease research developments and checking out some docs' resumes, we started with Dr Lerner (we are from MI). He started early Jan 2009 for the workup et al, and started Valcyte end of March/early April for his HHV-6 (no co-infections). Initial dose of 3 tabs per day was increased to 2 tabs twice a day, and he has slowly been improving, as has his energy score. His cognitive issues/fatigue are much improved. He continues on this dose of Valcyte, and was prescribed Leflunomide 10 mg per day as a boost to the Valcyte, but our insurance won't coverit unless he has Rheum. arthritis; there is also a national shortage. We are exploring options thru a Rx assistance program right now.

    He did not feel any better after starting Valcyte for at least 6 months, and felt more tired, if there is such a thing, but nothing like you are experiencing. He does not have co-infections, however. We continue on every 6 week appts for all the labwork and clinic appt, and were to have closer visits every 4 weeks if could have located the new Rx.

    It was initially hard for him to rest as advised, as wanted to expend some energy like any normal kid from time to time when he felt better, but then would pay for it. He paid attention to the rules that Dr. Lerner set down (and we reinforced). He has improved enough that he was able to start a iighter martial arts class 2xweek.

    He is still not where he wants to be at this age, and is still concerned about cognitive function to some degree (doesn't want to take drivers ed yet due to concerns about coordination and cognition/alertness) but has come a very long way!!

    I am sorry that I cannot add anything of any substance re: how badly you feel despite 20 months on Valcyte, and hope that you will have a change in progress soon.