Famvir "Herx"

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by m1she11e, Apr 10, 2009.

  1. m1she11e

    m1she11e New Member

    I am trying Famvir for my high HHV6 levels. I know that Famvir is not supposed to be effective for HHV6 but I went to Dr. Dantini, who has been treating CFS (including his own 20 years ago) with anti virals for longer than most. I tried to do Valcyte but after several attempts just got too sick and the drug really scared me.

    Okay, now I am 2 weeks into Famvir and experiencing the same Herx symptoms I got on Valcyte (although I never worked up on Valcyte to more than 1 pill every other day and still got too sick to continue) I think I could have continued but on top of being sick, I knew the Vaclyte was lowering my immune system so I feared some other Pathogen might be having a field day. At least with the Famvir I know it is not lowering my white cell count or harming my liver. Im not saying it is perfectly harmless, no drug is, but it is not even in the same ball park as Valcyte as far as being hard on the body.

    What I am sooo confused about is that the "patient advocate" for Dr. Dantini sais that no one gets sick on Famvir. She sais that is why Dr. Dantini doesnt use Valcyte. I would like to hope that since I have the same symptoms I did with Valcyte and they are alot like what I have read about from others on anti virals that feeling bad is a good thing. I would like to hope the Famvir actually is having an effect on my HHV6. Unfortunately, Dr. Dantini is not covered on my insurance so I cant talk to him directly unless I want to pay a couple hundred dollars to confirm this is normal for anti virals. His advocate has NEVER heard of anyone getting sicker first on Famvir, Valtrex or Acylovir. She sais I must have eaten something I was allergic to. I have not changed my very clean diet at all. It is not that I am so sick that I cannot stand it. I just dont understand why, when they use anti virals on so many, they say they dont see people get sick for a time.

    I know there were others on Famvir on this board. I dont understand if getting sick first on Valcyte is a good sign, why it wouldnt be a good sign on Famvir as well? I think Slayadragon got very sick on Famvir but I guess you cant send personal messages on these boards.

    Anyone herx on Famvir??? I also understand that "Herx" doesnt really apply to anti virals as they only stop replication. I also know people who have gotten well (and some that have not) have gone through typical "die off" symptoms. I am just describing it as a "Herx."

    Thanks,
    Michelle
  2. ladybugmandy

    ladybugmandy Member

    i am pretty sure i have heard of people getting sick on famvir and valtrex....
  3. spacee

    spacee Member

    I am pretty sure that she herxed on Famvir. It was definitely one of the "lesser" antivirals that helped her.

    Spacee
  4. spacee

    spacee Member

    put Mikie and famvir in the "search" sifted through a few pages and it came up. The post I read was July 2008 but she was probably commented on prior use.

    Spacee
  5. m1she11e

    m1she11e New Member

    It is Mickie and Slayadragon that I know used Famvir. I thought for sure one of them said they got as sick on it as people talk about on Valcyte. I also could not really figure out if they ever got good results. It seemed like they were getting decent results at one point but then moved on to other issues like Mold and Lymes.

    I appreciate the feed back!

    Michelle
  6. heapsreal

    heapsreal New Member

    i have cfs/me after ebv and chickenpox infection about 7 years ago. I have been on famvir for about 5 months. I am feeling alot better, not really lots of energy but not crashing like i use too. Have been having increased muscle aches and pains. Cant recall any real herxing although i wonder if the increase in aches and pains is. 3 months after being on famvir my lymphocyte count went down, doc thought this was a good sign as they were high previously elevated which may mean ebv reactivation
  7. SpecialK82

    SpecialK82 New Member

    Hi Michelle,

    I went to Dr. Lerner and was treated with Valtrex. He told me I would feel worse in every way for the first 2 - 6 weeks - and I definitely did. He also switched me to Famvir after I was having some problems with Valtrex and he said Famvir does the same thing (as far as the virus is concerned).

    So, I would think it would be logical to assume that you would have the same "herx" like reaction to Famvir.

    I'm really surprised that Dr. Dantini's office has not noticed the same thing??

    Kristina
  8. Mikie

    Mikie Moderator

    Anything which can cause a large dieoff of pathogens in the body can cause Herx-like reactions. It's just possible that the AV is causing such a large dieoff that you feel sick. I would ask the doc about backing off and starting out slowly. BTW, I took a transfer factor which targeted both strains of HHV-6, among other things, and I had a HUGE reaction. I had to actually open the capsules and sprinkle just a bit of the powder under my tongue. It was a month before I could tolerate a whole capsule.

    Always go with your own instincts on these things. Just because a doc, nurse, or "advocate" tells you something doesn't make it so. Of course, it is dangerous for us to be out there experimenting without medical supervision, but sometimes the medical people don't know it all. I had one doc tell me that there was no such thing as chronic mycoplasma infection--Duh!

    Good luck.

    Love, Mikie
  9. m1she11e

    m1she11e New Member

    Thanks to all for taking the time to respond. I suppose I knew that it only made sense that any AV can cause I die off reaction. There was just something that really got to me when she said the opposite of anything I have ever heard. Any time anyone starts Vaclyte and gets sick, the docs and everyone say "hang in there, it is a good thing." Just hearing that from my doctors office at a low point would have meant the world.

    I had a really down week though. Not only was I so sick with the head aches, nasuea and exhaustion, I really came apart emotionally. Every little thing would set me off and I would just cry and cry. I think some of it was truly sick of being sick, but I think some if it was a chemical thing too. The doctors office not confirming my symptoms at all just really sent me over the edge. The responses here have made me feel so much better so THANKS!

  10. m1she11e

    m1she11e New Member

    Thanks to all for taking the time to respond. I suppose I knew that it only made sense that any AV can cause I die off reaction. There was just something that really got to me when she said the opposite of anything I have ever heard. Any time anyone starts Vaclyte and gets sick, the docs and everyone say "hang in there, it is a good thing." Just hearing that from my doctors office at a low point would have meant the world.

    I had a really down week though. Not only was I so sick with the head aches, nasuea and exhaustion, I really came apart emotionally. Every little thing would set me off and I would just cry and cry. I think some of it was truly sick of being sick, but I think some if it was a chemical thing too. The doctors office not confirming my symptoms at all just really sent me over the edge. The responses here have made me feel so much better so THANKS!

  11. wldhrt

    wldhrt New Member

    I have been on both Valcyte and now Famvir. Though being on the Valcyte was brutal, the Famvir has also caused some definite exacerbation of my symptoms. Dr. Dantini told me the same thing - that he uses Famvir because there are no side effects, or "feeling worse". I can attest that I have been feeling not as well while on the Famvir.
    By the way, I was negative for HHV-6 (positive for EBV) and was put on Valcyte (by DeMeirleir) anyway, and still had a strong and prolonged herx-like reaction. Contrary to what I sometimes read on this board, there is no correlation between specifcally using Valcyte for HHV-6 and Valtrex\Famvir for EBV. I do research for a local doc and am privy to patients treatment and labs and we have not had consistent results with either drug, no matter if the patient is positive for one or both viruses. One or the other drug may work just as well or not so well on either virus. Remember, neither of these drugs are specific for EBV or HHV-6; we are really using them as "off-label" treatment.
    So it really depends on the individual on whether you will get positive results from either drug, and I would suggest if one isn't giving the benefit you might expect, then to try the other - you may need both.
    Also, m1shelle, you mentioned your diet - I presume Dantini is trying to heal your gut issues, which is a positive step. According to DeMeirleir, however, the antiviral treatments actually can make the gut issues worse, as, in his words to me, "antiviral treatment can increase immune activation", which, I gathered to mean that the immune response is part of the problem in leaky gut. I myself am on an elimination diet which I will continue even after I stop the Famvir treatment to hopefully insure facilitation of the healing of the gut. I know Dantini believes you need to address the gut and viral issues at the same time; Demeirleir believes doing them separately is the way to go. Again, there seems to be no consensus on treatment, but I believe you're on the right track - hang in there.
  12. m1she11e

    m1she11e New Member

    Thank you Widhrt,

    I appreciate your first hand knowledge of Dr. Dantini and some confirmation on a couple of things. First, that Dr. Dantini isnt just not up to date on AV by believing that Famvir can indeed be successful for some with HHV6. I find it interesting that you were put on Vaclyte by a top doc for EBV despite what we have all heard. I also knew in my gut that people had gotten worse on Famvir and Valtrex like Valcyte and it is supposed to be a good sign. Im sure some of the getting worse on Valcyte is the drug being so hard on the body. I clearly got worse after a week of feeling pretting decent on Famvir. One day I was feeling like I was healed (we all have those odd good days) and I was thinking maybe Dantini is right and I wont get sick. The next day it hit me out of the blue. An increase in old symptoms and the head aches, coma like exhaustion and feeling nauseated. It really confuses me though that with all the poeple Dr. Dantini treats, that he is not seeing this increase in symptoms that all the other AV doctors warn you about.

    I have not got my food allergy test done yet becuase Dr. Dantini is not covered by my insurance. This means I have to go back to my original docotor in Orlando which is an hour and a half drive that I dont think I can do at this point. I really know it is important though.
    I keep hoping I will start feeling a little better so I can make the drive. For now I am avoiding dairy, wheat, sugar, and corn and taking things that are supposed to help heal the gut.

    So, are you feeling any better after the anti virals and working on your food allergies? Are you still a patient of Dr. Dantinis?

    Thanks again,
    Michelle
  13. wldhrt

    wldhrt New Member

    I am feeling better, much less pain, way more energy and recovery time is improved. Starting the Famvir did set me back, however; I had been off Valcyte for a few months and doing OK when I started the diet. I added the Famvir about two months into it and am still doing both.
    I actually have never been a patient of Dantini's; with the research I do, I have had the privilege of speaking with many of the top doc's associated with this illness and his take on the gut issues corresponded with most of the other researchers I had contact with.
  14. Forebearance

    Forebearance Member

    Hi Michelle,

    It's really interesting to hear about your experiences. I hope the bad phase won't last long.

    I remember when Slayadragon was taking Famvir and was feeling worse. Her doctor, Dr. Guyer, thought it was fine to reduce the dose to a manageable level. He believed that it's not good to put one's body through a lot of suffering.

    So Slaya cut back to a very small dose, if I remember correctly.

    Then she found out that she was living in a moldy house, and did all the stuff to get away from it. Since moving out, I don't think she has tried taking Famvir again. But I believe she thinks that if she tried it again now that she isn't being constantly poisoned, she could tolerate it better.

    She did try antibiotics for Lyme after moving out, and could tolerate those a lot better.

    I even Herxed on Virastop, which is a very gentle anti-viral supplement. So I totally believe that you could feel worse on Famvir!

    Love,
    Forebearance
    [This Message was Edited on 04/15/2009]
  15. MartiniB

    MartiniB New Member

    Hi there,
    I am on Famvir too for Fibro- been on it almost 2 weeks and feel so awful- as if I'm having the worst fibro flare ever! I read that it is a good sign because it means you do have a virus, and you are detoxing. I had a phone consult with Dr Dantini too. I agree it is frustrating that it costs so much to even have a phone consult. I wanted to do the Sage test but right now as my insurance won't pay(is not considered an accurate or evidence supported test), it is just too expensive. How much Famvir are you taking? Are u taking it 3 times a day?

    I hope we both feel better soon!
    :)
  16. m1she11e

    m1she11e New Member

    I gave up on the Famvir. I didnt want to but it brought on a flare of neuro symptoms by about week 3. At that point I could not afford to go in and see Dr. Dantini and his advocate has NEVER heard of anyone having a "die off" to Famvir or Valtrex. I couldnt see spending the money to see Dr. Dantini in person (I live in Palm Coast but he doesnt accept my insurance) and having him just tell me that I was not experiencing anything due to the anti viral. I could handle some kind of an explananation and maybe him telling me to back off or ANYTHING but how do you remain on a medicine that you know is making you sick, have read it is supposed to be a good sign that you are sick, but have a doctor that sais that is not the case. ???

    I am going to some one new now. I was taking 500mg 3x a day. I could not afford the Sage test either. I hated throwing out the whole anti viral protocol but the neuro symptoms, that I have had for years now but just on and off and mild, had turned in to can barely walk or move my right arm. It was very scary! I was also so incredibly exhausted and depressed! It was like nothing I had ever experienced. I am slowly getting my strength back now that I have been off the Famvir for 3 weeks.

    I hope it works for you. I may have stayed on in if Dr. Dantini would have said anything like "hang in there, this is a good sign." That patient advocate of his just insisted it was "probably something I ate." The frustration of dealing with them, feeling awful and being scared of losing all feeling in my right side did it for me. Who knows, maybe it would have turned out good in the end. I just couldnt get through it without a doctor's support.

    Michelle
  17. mome44

    mome44 New Member

    Hi,
    Im trying to find people who are seeing dR. Lerner. I just started and taking Famvir. IM hoping for some positive feedback. Im on my last hope. I live near Dr. Lerners office and also looking for support group close by.
    mome