Lerner, Valtrex, Valcyte and going to college

Discussion in 'Fibromyalgia Main Forum' started by sickofcfs, Jan 2, 2010.

  1. sickofcfs

    sickofcfs New Member

    My teenager has a first appt with Dr. Lerner soon. She has a high EBV titre, is negative for CMV, and is as yet untested for HHV6. We expect she will be prescribed Valtrex and possibly Valcyte. She is currently an engineering student and we are concerned about ability to function during the early months of treatment. [BTW, I'll be seeing him soon, too, so we'll likely be going through treatment together (assuming we can afford it).]

    Will those of you who have been through treatment with Dr. Lerner share your thoughts about your first 4 months of treatment and what you think about going to college while under treatment?

    My uncle was taking Valtrex and Valcyte for 5 years under Dr. Lerner's care. He had no side effects and started feeling better within the first 3 months. He's been in complete remission for a couple of years now. I'd love to think our experience will be similar to his, but suspect life is not that easy. :)

  2. ladybugmandy

    ladybugmandy Member

    sick...since whatever this is runs in your family, there is a good chance its the same "disease" and will respond to the same treatment your uncle responded to.

    i saw lerner for over 1 1/2 year and did not achieve sustained improvement. i do not see him anymore but am still on the valcyte + valtrex protocol. i am very sick but get even sicker off the antivirals.

    personally, i would get tested for XMRV before embarking on lerner's antiviral protocol.

    best of luck
  3. sickofcfs

    sickofcfs New Member

    Thanks, Sue, for your response.

    We're postponing XMRV testing until there's something we can do with the info. :)

    I'm thinking about Dr Peterson's recent theory of mechanism of XMRV and ME/CFS, noting, of course, that like most current info about XMRV, it's a theory, not a fact.

    (Ref: http://www.cfids.org/xmrv/cfsac-lyndonville-news-oct09.asp)
    Step 1: Infection with XMRV
    Step 2: Infection of B, T lymphocytes and NK cells
    Step 3: Impairment of NK cell number and activity
    Step 4: Reactivation of other agents.

    "Increased viral load of EBV and other agents cause cytokine production, activation of 2'-5'A Synthetase, RNAse L which contribute to symptoms. It is interesting to note that AIDS patients feel better with suppression of secondary infections. This could explain why treatment with antibiotics, antivirals, gamma globulin and other agents make some patients with ME/CFS feel better for a while."

    I think it's unlikely that in the next couple of years there will be an anti-retroviral for XMRV anyone (including me) will want to use on a 17yo. Our best bet for the time being is to knock down the secondary infections which may be the cause of many of my daughter's symptoms... that's my best guess at the moment.

    Also, it seems to me that a large part of our ME/CFS symptoms are the result of the secondary infections, not the XMRV infection. Isn't that true in the only well-researched infectious human retrovirus -- HIV? So even if we had an anti-retroviral, wouldn't we likely need anti-virals to knock down reactivated infections? That's just my thinking at the moment; I'm sure there are lots of other equally (or more) valid theories out there. :)

    Wouldn't it be nice to have a clearly defined treatment plan so we wouldn't have to be guessing?
  4. ladybugmandy

    ladybugmandy Member

    yes it certainly would. never dreamed i would be in a situation where i would be testing experimental drug protocols on myself!

    if i wasn't so sick, i would wait for the first less harmful anti-XMRV retroviral drug to come out...but since i am so sick, i plan to start AZT 500 mg daily as soon as i am able to get a positive XMRV test.

    i have heard that at 500 mg, AZT likely will not produce too many side effects...but i am not counting on this!

    i will keep you all posted on what happens if i do start AZT.

    as for lerner's protocol...yes i do think that treating the herpes viruses is worthwhile if they are active. even HIV patients do this. it might buy one a couple of years of improved health until better XMRV drugs are found.

    whether it is better to treat now with AZT despite the toxicity OR to wait and let the XMRV do more damage until better drugs come along, is probably as unclear as it is with HIV treatment and when to start that.

    [This Message was Edited on 01/04/2010]
  5. sickofcfs

    sickofcfs New Member

    <<i plan to start AZT 500 mg daily as soon as i am able to get a positive XMRV test.>>

    Do you have a doctor willing to do this? I'm thinking most doctors won't be until we have a lot more info, but maybe I'm wrong... I still don't know enough about AZT.

    Are you willing to share why you are not seeing Dr Lerner anymore? Do you have a doctor near you willing to prescribe antivirals and monitor liver function carefully?

    Isn't there some question about what "active" means with regard to herpes viruses? Do you know if Dr Lerner prescribes anti-virals for herpes virus infections that aren't active (by some definition, at least)?

    << it might buy one a couple of years of improved health until better XMRV drugs are found.>>

    That's what we're thinking -- for a college kid, anyway. She's not really in a place where she can sit around and wait for something to happen. :) I may have to wait if we can't afford anti-virals for two people at one time.

  6. chrissy12

    chrissy12 New Member

    Hi, I am still a patient of Dr. Lerner and I have been on valtrex, valcyte and doxycycline for 2 years. I have improved and can do a little more and then crash. I cannot say I am in remission.

    The first 3-6 months were very hard on valcyte.. I could do nothing, but lay there and feel sick. However, I know of several people who didn't have that reaction. It really depends on the person. It does seem that the younger patients do better.

    When you start going, he will want to see your child about every 4 weeks to check liver and see how she is doing. About 3 months into it, he will say every 6 weeks. It is never less than that now.

    I am interested in your uncle. At what point did he go into remission and is he still taking valcyte? I know that most people will always be on a maintenance of valtrex, but I had not heard that about valcyte.

    Thanks for any info you can give me and feel free to ask other questions.
  7. sickofcfs

    sickofcfs New Member

    I checked with my uncle.... He was under Dr L's care for 6 years and has been in complete remission - without Valtrex or Valcyte - for two years. He says he had "no trouble" with either of the medicines (including both at the same time). His improvement was continuous throughout treatment starting within the first 3-4 months. He's one of the success stories, I imagine.

    I'm hoping my daughter tests negative for HHV6 so Valcyte is not even a question. Of course I'm also hoping for a magic pill cure and peace on earth, lol! Seriously though, I hate to think of her spending the next semester lying in bed and feeling sick.

    She was in remission until her PCP gave her a live vaccine (Varivax?) along with a couple of other killed virus vaccines in early Feb. Yes, my husband asked and the PCP swore it would be fine. She got better (not in remission, though) before she started her first semester in college. Then there was swine flu and pneumonia, poor kid, and not surprising - a major CFS relapse. It's a miserable story, but I do have a point in telling it. ;) Since she's young and and was largely in remission until this year, perhaps she'll be one of those who do very well.

    Thanks for sharing your experience. My uncle had a good experience, but it's important to see the whole picture. We'll hope for the best and have a backup plan for the worst.
  8. chrissy12

    chrissy12 New Member

    Thanks for the information regarding your uncle. It gives me hope. It has been a slow road, but there has been improvement. I am happy to hear your uncle is doing so well.

    It sounds like your daughter has had a rough time recently. I am really sorry that she has to deal with this at such a young age. There is a girl around 20 who started with Dr. Lerner last May and she is doing much better. I think she was on valcyte.

    It does appear that the young people get better quicker, probably because they have better immune systems. We will hope that all goes well and she is in remission soon.
  9. ladybugmandy

    ladybugmandy Member

    sick....i dont see dr. lerner anymore because he kept stopping or reducing my valcyte because my liver enzymes kept getting elevated. he said it wasn't safe for me to continue the drug but whenever i stopped it, i would become so sick i felt as if i would die. i actually began to have trouble breathing and couldn't get out of bed at all. so i decided to just continue the drug on my own. i am at the point where i am so unbearably ill, i don't care about being safe anymore. it is just a matter of how to get through another day. i did have a mildly abnormal liver ultrasound recently.

    it was also very expensive for me to see dr. lerner - $750 or more per trip including travel - and i had to travel there from canada, waking at 5 AM and getting home at midnight. it was very grueling. he used to ask me to come every few weeks because of my liver enzymes. he would also order additional testing through beaumont hospital in michigan, which cost me a lot more money.

    at first when i stopped seeing dr. lerner, i was followed over the phone by my old doctor in NYC, dr. leo galland. i would fax him bloodwork. he was not as strict and understood that if i stopped valcyte, i would likely commit suicide.

    now, i rarely get bloodtests or see doctors and just take valcyte + valtrex because i am out of options. i am very sick.

    when the XMRV news came out, i had blood sent to nevada for testing. i am still awaiting results. i am praying for a positive test. i have found a local infectious disease specialist who has tentatively agreed to prescribe AZT for me and follow my case if i test positive for the virus. i am prepared for a false(?) negative, in which case i may elect to take AZT anyway (you can purchase it yourself) and be followed by the NYC doctor.

    i think the XMRV study is being taken seriously by many doctors. apparently, retroviral activity in a human being is not a normal finding.

    dr. lerner may prescribe antiherpetics even if you dont show elevated antibodies..it depends on what else he may find, what symptoms you have, and what he can glean from your other bloodwork.


  10. chrissy12

    chrissy12 New Member

    I am really sorry you had to stop seeing Dr. Lerner. I know that is a lot of money and I would not be able to do it if it cost me that much. I have good insurance.

    I have been on the valcyte for 2 years and would really like to stop, but I don't want my progress to slow down. It was encouraging hearing about sickofcfs's uncle. He had been on the drugs for 4 years and is in remission. That must give us hope.

    I have been following your report on the XMRV test. I hope for you it comes back positive and your doctor can try different things for you. Remember though, this test may have flaws and there is no antibody test yet. So hang on a little longer. I am thinking summer sometime we will have more information regarding testing.

    Take Care..
  11. ladybugmandy

    ladybugmandy Member

    hi chrissy..thanks:)

    how are you doing these days?

    personally, i dont think i can wait until the summer. i almost went to the ER last night cuz i felt so bad...but i know they wouldnt have helped so i didnt go. i almost fainted.

    for the last few months i have been smelling something weird from my body too....i have never smelled it before. i wonder if i am developing cancer or something.

    i know there must be some people - maybe many peope - who are taking AZT now for CFS. i wish they would come online and post. i am sure there are thousands who are too sick to wait for more studies and more tests.

  12. chrissy12

    chrissy12 New Member

    I am doing okay these days, Sue.... I am still slowly moving foward. Sickofcfs gives us hope. Her uncle has been with Dr. Lerner 6 years and is now in remission. I am going to stick it out as long as I can.

    I am sorry to hear you being so sick last night. I have had days or nights where I feel like I am really out of it. It usually passes in a few days...

    That is interesting about the smell coming from your body. I was with a doctor who is very in tune with people. He has found a certain smell with some of his CFS's patients. He never told me that, but did find it with some of his patients. They did not have cancer, either one of them. One is better and the other one is still in treatment. I think the smell went away as he got better. So hang in there. It could be coming from the infection in your body, not cancer.

    Take care.....