Struggling on Dr. Lerner's Anti-Viral Protocol

Discussion in 'Fibromyalgia Main Forum' started by RachelK, Apr 1, 2011.

  1. RachelK

    RachelK New Member

    Hi, my name is Rachel and although I have been sick with CFIDS/FMS for about 13-15 years I am new to support sites like this one. I live in California and spent most of last year commuting to Michigan to see Dr. Lerner. I have been on 3 doses of Valcyte a day since June 2010. (after having to stop for a short time because the nausea was so bad). I am also taking 4 doses of Valtrex a day. Lerner made a point to say that 4th dose is important as well as NOT taking the generic.
    I had to stop going to Lerner at the end of the year due to all the costs except the meds being out of pocket and I didn't think I could do one more plane trip.
    I finally found a doctor who agreed to follow Dr. Lerner's protocol, he had treated me for Lyme previously. Unfortunately, he really doesn't "get" the treatment just willing to help me try it, so I can't ask questions. So, finding a place I can talk about this is really great. I have been on Valcyte for 9 months and Valtrex awhile shorter. I have been very sick (on top of regular sick) for the last 2 months and don't know if it is related to the protocol because I had some times in between the Herx response and when I started feeling this horrible where things were ok. I am relieved to read other people had emotional responses because I have also had anxiety and depression(this past 2 months) and didn't know if that was due to being so isolated and feeling so miserable or if it was connected in a different way. When I first started this it was the first time I had HOPE and for that was willing to go through just about anything. Now, am losing hope and don't know what to do. I have read about people being on AV's for a relatively short time with improvement and someone who has been doing it for 27 months. I know Lerner's last study had people on the protocol for 2 1/2 years. I guess what I would like to know is if I should keep on it and suffer through until I feel better or stop and see if things improve. The local doc will only test for CMV, HHV-6, EBV, etc.. every 3 months. He did agree to testing my kidney/liver once a month when I pushed. Since he is only prescribing this because I wanted to asking him will only bring a its up to you answer. Has anyone else become pretty much bed bound this far in to treatment. Before I started I had the usual up & downs. Now just flat out down. Very Sorry this is so long, but I feel desperate and need some direction. Thank You.
  2. heapsreal

    heapsreal New Member

    i havent used valcyte but have heard many people say they get sick on it. Valtrex seems to be better tolerated. Can i suggest you look into famvir, its not commonly used for other infections other then shingles and genital herpes but is known to have an effect against ebv, cmv and hhv6. I myself have had ebv and cmv and seen elevated lymphocytes come down with symptom improvement. Others i have spoken to have mentioned there viral titres to hhv6 have come down with just famvir. Famvir is alot less toxic then valcyte and can be used for long periods of time. I use a dose of 250mg twice a day. If you go to the pheonix rising cfs board they have an antiviral section talking about your sort of issues. But bounce between these boards as they both have lots of good info.

    good luck,
  3. RachelK

    RachelK New Member

    I hope I am writing in the right place.

    Thanks for taking the time to respond. I know I have been sick much longer than those patients of Dr. Lerner's who were "responders" in his latest published study. Don't know if this means I need to stick with the protocol longer or if in the end I just won't be a responder.

    Or if it isn't even related to the anti-viral blast I have been doing. I just took a shower for the first time in days. I was doing better before while still on this protocol. Its kind of like I went back to the herx response. NO FAIR! I already went through that misery and find I am that miserable again.
    Thanks again, I'll look into famvir.
    Take Care.
  4. heapsreal

    heapsreal New Member

    I think there is still some underlying condition effecting the immune system and after reading Olsers web and WPI's findings, i believe its a retrovirus. So keeping these other viruses down we will still be having relapses but maybe not as bad or they could have been worse. I just hope that we like dr lerner can improve and come off antivirals eventually. I recently read that he was personally on them for about 4 years i think.

    stay in touch,
  5. spartanjt

    spartanjt New Member

    Rachel - I've also dealt with CFS for more than 17 years & live in the Detroit area. I'm familiar w/Dr Lerner & his treatments & know of at least a few folks who have been treated by him.

    Through all these years, a couple of things have struck me re. Dr Lerner & his approach.

    The first thing is that in the CFS/FM community here in the Detroit area,,,Dr Lerner's name/protocol has never been one that has stood out over other holistic/complementary docs in this area. In fact, I never knew who he was until after seeing him mentioned on CFS message boards several years back. This fact, is not meant to reflect either way re Dr Lerner, but suffice it to say, folks here w/CFS have never headed to him in droves to seek his help.

    The second thing is that I do not know anyone, including those I've had contact with that have been treated by Dr Lerner that got any significant improvements from his treatments. What I heard, is similar to what you've described, i.e. difficulties handling the side-effects of the anti-viral regimens & in other cases, difficulties paying for these ongoing treatments.

    I want again reiterate that I'm just stating what I've heard first-hand from some of this patients,,,,much of which came from this message board.I understand that Dr Lerner has spent many years working on his protocols & I assume that he has success stories that he can point to. Unfortunately, in my discussions with those who've worked with him, I've not seen any of those successes. Possibly, the fact that all the folks i've talked to, did eventually have to come off the protocol & did not stay with the regimen long enough to see the benefits,,,,not sure.

    For myself, i've worked w/other local holistic docs after starting a treatment regimen with Dr Conley in Flint back in 1996. Dr Conley provided with me info from his testing that gave me some of the larger key issues to concentrate on & I'm still using that info to this day. His was a comprehensive approach to getting better, which I believe is the best way to get health improvements. I do believe that the virus issue is one component of CFS/FM,,,,but it is just one issue, of many, that needt to be addressed. Slowly but surely over the course of these years I've gotten subtle improvements from year to year, but it has been an ongoing battle.
  6. heapsreal

    heapsreal New Member

    To be honest, i dont think the holistic guys are much chop either as they would have the world flocking to them too. I dont think at this stage anyone has the whole answers. Dr Lerner is quite expensive from what i have heard but you could always get copies of his studies and take it to another doc who could prescribe the meds to you. I think it comes down to lerners testing and how he interperets the results as well. His treatments that i have heard from others arent cures but do improve on the patients current function.

    My experience with antivirals famvir is that it lowered my chronically high lymphocytes down to all most normal and has improved my ability to function. Im not cured but im doing alot better on antivirals then off antvirals. I still use alot of holistic treatments but if i had to pick between them i would pick antivirals, holistic medicine i believe can help try to keep you healthy in a general sense but as far as treating cfs it depends on what is main issues causing your cfs and at the moment there are no guaranteed treatments for cfs, yet.

  7. misskoji

    misskoji Member

    I was also a Lerner patient. Like you, I had to stop seeing him (twice) because I could no longer afford the travel and out of pocket expenses, and the travel was seemingly undoing the progress I was making.

    I really miss Dr. Lerner, no other doctor has treated me with such respect and empathy. He is also very thorough in testing and looking at other things that could be contributing to illness.

    Like you, I have also convinced my PCP to try Dr. Lerner's protocol (Valcyte and Valtrex). As you already know, it's very important that you get kindey and liver testing done regularly while on these antivirals. I actually got lucky in the fact that my doctor took the time to read the publications on Dr. Lerner's website. I also mentioned that Lerner uses specific labs to run his tests, and my doctor is open to using these labs as well. Perhaps you can ask your doctor to read Dr. Lerner's site more carefully?

    Before seeking out Dr. Lerner, I was bedbound 75% of the time. I did still have the rare "good day", as good as they could be, I suppose. During the first few months of treatment, I saw no improvement, and stayed bedbound. Dr. Lerner reminded me several times that the time during treatment will be rough(er), and not to push myself.

    I started to have some improvement around the fourth month of treatment. Moderate energy improvement, cognitive symtoms lifted slightly, I was sleeping better. The downside during that period is that I seemed to have more pain (especially in the legs). I reported that to Lerner, and he suspects this "bone pain" is due to HHV6 infection. I digress.

    I guess my point is...I didn't see any major improvement until about 45 days after I stopped Valcyte, which fits with what he told me would happen. The improvements I noticed then, and even some still today are: no more leg pain, I am now more cognitively clear than I have ever been during my illness, I have returned to being able to function, I'd say about 50% more than when I first was ill. I'm still sick, and still have to pace myself, but I can definately say that antivirals worked for me. Not a magic bullet, but they helped.

    So, I guess what I'm trying to say is...I felt better after completing a 6 month and 8 month antiviral therapy, but did get worse before I got better. Of course, everyone reacts differently to treatments and meds, but I would suggest giving yourself 2 months time to see how you feel before you decide to try antivirals again. Do keep in mind, though, that HHV6 and others can build resisitance.

    I hope I've made sense here, lol, I didn't sleep well last night. Good luck and let us know how you are doing and what you decide.

    Best of luck,
  8. RachelK

    RachelK New Member

    Thank you guys for the information. It has been about 9 months that I've been on Lerner's protocol. Did he tell you to stop or did you decide when to? I stopped for the week-end, but don't want to stop longer than that. I am still not sure if it is the antivirals that have thrown me down for so long. I have basically been housebound for the last couple of months and not doing that well since end of January. I really need to talk to a doctor who knows about this and "gets" it. I had time that was ok after the herx response was over. That is why I am reading anything I can to hear other people's stories. I felt like I did all the hard part and was basically doing alright so I thought switching to a doctor to just write scripts would work out. But, unfortunately he hasn't read all the information from the Lerner study or even all my labs I would guess. Dr. Lerner isn't a flashy guy, that's for sure, but he knows so much about this subject and seems to really care. I wish he would have trained a couple of other docs as he is elderly. Anyway, I need to know how long to stay on the a/v's or when I would be considered a non-responder. I may try e-mailing Lerner a question that can be answered briefly.
    Thank you for helping me not feel so completely alone. I really appreciate your responses.

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