CFS: Antiviral Update

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, May 19, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. thought i'd post another update. i have been on valcyte for 7 months and valcyte+valtrex for another 14 months.

    i am still very sick.

    i was getting better for a while and even had 4 days of almost normal brain function. i was ecstatic and told everyone i would be well soon.

    over the last month or so, i have crashed almost completely. i again have the brain fog, pain in the back of my neck, and the swollen, throbbing, "full" head feeling.

    i do not know whether this is because the HHV6 has become resistant (dr. lerner has had to reduce or stop the drug several times due to liver issues), whether this is the normal up-and-down of treatment (as dr. lerner claims), or whether valcyte is not effective enough for the HHV6 strain that i have.

    i know i have active HHV6.

    i have told dr. lerner that i wish to sign a waiver to stay on at least 450 mg a day of valcyte regardless of my liver enzymes and he said he will discuss this with me at my next appt. however, this is the dose i am on now and i do not think it is enough.

    i have read many accounts of other peoples' experiences on antivirals. some get well within a few months with a steady improvement and others seem to have minimal improvements, even after many years. i have read of 2 people taking 6-8 years to get well.

    i know some people who are on 3 or more valcyte a day with no problems and that is what i wish i could do.

    i have to go back to part time work early next year (assuming i can find a job) or i lose my drug i am not in a good position.

    maribivir, as it turns out, will not be approved anytime soon because it has failed phase 3 trials. there is really nothing else out there for HHV6 other than cidofovir or foscarnet (cost prohibitve for me). i am in canada so i will not be able to get ampligen covered when it is FDA approved....

    an oral form of cidofovir may be available in a few years.

    thanks for reading,
  2. Pansygirl

    Pansygirl New Member

    just wanted to send a gentle hug, Susan

  3. ladybugmandy

    ladybugmandy Member

    thanks guys.

    i know i have a pattern of posting that i am doing well and then posting that i am not. i am hoping that this is just a long "down" phase but something tells me otherwise. usually, after 2 weeks or so of severe illness, i emerge feeling better than i did in the last "up" phase. this is different.

    i have asked my doctor for immunovir but he has refused. i might be able to find another doctor to give it to me but it would take some doing. also, the more i take, the more burden my liver will have, so i am worried about that too.

    that's interesting that oxymatrine helped you. i will look into that. there are things such as milk thistle and betacol that may help liver but that's still kind of iffy from what i have read.

    k. loomis recommended avemar and immunocal/immunopro. maybe i should order them but they are so expensive and avemar looks just as hard to stomach as immunocal was. i almost vomited everytime i took immunocal. maybe i should give transfer factors another try...

    i have looked into artemenisin and red marine algae but so little gets absorbed it cannot really help.

    i just feel like all these supplements are a drop in the bucket - much too little, much too late.

    [This Message was Edited on 05/19/2009]
    [This Message was Edited on 05/19/2009]
  4. ladybugmandy

    ladybugmandy Member

    thank you for your suggestions...

    i am in total agreement with you. i also feel that a big problem might be that people do not stick with the treatment long enough and perhaps that is why there is little success. this is why i am not throwing in the towel - that, and i don't really have any other treatment options lol

    yes, i did have a few great days. also, my RNase L activity was almost normal when i tested it almost a year ago (although, if RNase L meant anything, you would think i would be feeling better by now!)

    thank you for telling me that HHV6 cannot mutate that easily. it made me feel better.

    i have always been suspect of pulsing medications. i cannot really find any sound scientific evidence as to why pulsing would ever be beneficial.

    i did have posterior neck pain as one of the 1st symptoms after the acute mono phase 18 yrs ago. sometimes, it was so bad that i could not even move my head at all. that's why i was convinced i had a brain infection. when i feel sickest, the neck pain emerges.

    [This Message was Edited on 05/19/2009]
    [This Message was Edited on 05/19/2009]
  5. outofstep

    outofstep Member

    I know what you mean re: supplements but this one really seems to work. It's being used in China to treat hepatitis-

    1: Chin J Dig Dis. 2004;5(1):12-6. Links
    Experimental studies of oxymatrine and its mechanisms of action in hepatitis B and C viral infections.

    Wu XN, Wang GJ.
    Department of Hepato-Gastroenterology, Shanghai First People's Hospital, Shanghai, China.
    OBJECTIVE: Viral hepatitis B is a worldwide public health problem; in China, chronic hepatitis B patients account for 30-40 million people and chronic hepatitis C accounts for 16% of all chronic hepatitis patients. Interferon-alpha (IFNalpha) is rather expensive and has many serious side-effects, which makes practitioners prudent in its use. METHOD/RESULTS: A multicenter study held in China showed that the negative seroconversion of HBV DNA by oxymatrine and IFNalpha-1b was 42.3% and 40.7%, respectively, and that of HBeAg was 36.5% and 38.9%, respectively, after 3 months treatment with each in patients with chronic hepatitis. CONCLUSIONS: Oxymatrine has a similar efficacy to IFNalpha, but with no adverse effects apart from slight injection pain, and it is much less expensive.
    PMID: 15612666 [PubMed - indexed for MEDLINE]
    Related articles
    [Oxymatrine in the treatment of chronic hepatitis B for one year: a multicenter random double-blind placebo-controlled trial]
    Zhonghua Gan Zang Bing Za Zhi. 2004 Oct; 12(10):597-600.
    [Zhonghua Gan Zang Bing Za Zhi. 2004]
    [A clinical research on oxymatrine for the treatment of chronic hepatitis B]
    Zhonghua Gan Zang Bing Za Zhi. 2002 Aug; 10(4):280-1.
    [Zhonghua Gan Zang Bing Za Zhi. 2002]
    [A clinical trial of oxymatrine in treating chronic viral hepatitis type B]
    Zhonghua Nei Ke Za Zhi. 2001 Dec; 40(12):843-6.
    [Zhonghua Nei Ke Za Zhi. 2001]
    ReviewThymus-derived peptides in the treatment of viral chronic hepatitis.
    Dig Dis. 1996 Nov-Dec; 14(6):362-70.
    [Dig Dis. 1996]
    ReviewAdefovir dipivoxil and pegylated interferon alfa-2a for the treatment of chronic hepatitis B: a systematic review and economic evaluation.
    Health Technol Assess. 2006 Aug; 10(28):iii-iv, xi-xiv, 1-183.
    [Health Technol Assess. 2006]

    here is some info re: how it's supposed to affect the liver:


    One example of these substances is called oxymatrine. Oxymatrine is a complex alkaloid that appears to help protect the liver against the inflammatory processes associated with hepatitis and exert a healing effect. It is a unique quinolizidine alkaloid found in the stalk of the plant species Sophora flavescens-usually 2% of dried root stalk (Ku Shen). It has a molecular formula of C15H24N2O2 and a molecular weight of 264.36 grams per mole. When ingested, the majority of it loses an oxygen molecule and is converted to matrine: C15H24N2O with a molecular weight of 248.2 grams per mole.

    Properties of Oxymatrine/Matrine

    These two similar molecules exhibit protective influences on human and animal tissues against inflammation and microbial invaders like bacteria and viruses. They inhibit viral replication, reduce liver cell destruction, and protect against the scarring fibrosis associated with chronic damage. They also appear to promote bile flow which discourages gallstone formation. One of the ways they seem to work is by stimulating a type of immune cell called a T-helper1 lymphocyte to release cellular messengers called cytokines. These cytokines trigger a shift in the immune response to viral infection, enabling the body to fight it more efficiently.

    Read more: "Oxymatrine and Viral Hepatitis: A Unique Alkaloid with Healing Properties |" -
  6. ladybugmandy

    ladybugmandy Member

    may i ask how long you took oxymatrine before you noticed an improvement?

    have you ever tested positive for exposure to coxsackie or anyother enterovirus?

    thank you
  7. winsomme

    winsomme New Member


    i know a ways back you were looking for supplements (milk thistle, etc.) to try and bring you liver enzymens into the normal range.

    did you ever try any of them the see if the levels would come down so as to allow you to take the full dose of Valcyte?

    not saying you should, just wondering if you tried it...
  8. ladybugmandy

    ladybugmandy Member

    may i ask if you had GI issues that led you to suspect that you might have enterovirus infection?
  9. ladybugmandy

    ladybugmandy Member

    no, i never did try them. i am reluctant to order anything unless i know i will take it faithfully. i cannot afford much and have already wasted hundreds of dollars on various supplements that i did not end up taking.

    also, i am scared of taking things behind my doctors back, which is what i would have to do....

    i ran into a post about milk thistle raising someone's liver enzymes so that worried me...

    i have no idea how it works: if supplements are kind of like food, does that mean they cannot possibly burden your liver?
  10. winsomme

    winsomme New Member

    i know exactly what you are talking about. totally been there.

    wish i (or anyone) knew how you could get your liver enzymes down in a non experimenting way because it seems like you were doing so well on the full dose of Valcyte.
  11. ladybugmandy

    ladybugmandy Member

    i heard HHV6 infection itself can cause a sluggish liver and i've had this disease for a LONG time now. i must have some muilti-organ damage.
  12. ladybugmandy

    ladybugmandy Member

    thanks again!

    the immunocal i tried was about $80 for 30 packets. i was told to take 2 packets a day - thats $160 a month.

    it's odd that immunopro is so much cheaper..they are supposed to be pretty much the same thing. i think i will go ahead and order the immunopro and do my best to stomach it.

    dr. lerner once asked me if i could stop taking the 37.5 mg of effexor i am on (years ago, i used to be on 300 mg and it was not helping so, with A LOT of difficultly, i managed to cut it down).

    i want to stop taking it altogether but the withdrawal effects are so extreme, i come dangerously close to suicide when i try (and the brain fog with the withdrawal symptoms makes it doubly worse).

    i think if i could find a way to stop the effexor, maybe there would be less of a burden on my liver.

    thanks again

    [This Message was Edited on 05/19/2009]
  13. ulala

    ulala New Member

    I'ver read that people have weaned from Effexor by switching to Pristiq which is a sister drug to Effexor. It supposedly has less side effects than Effexor and is easier to stop taking. Maybe you could try switching to Pristiq so you can get off the Effexor.

    Best wishes!
  14. ladybugmandy

    ladybugmandy Member

    thank you. i have an appointment with a psychiatrist coming up soon and i will ask him about pristiq. strange, i've tried so many antidepressants but never heard of this one!

  15. ladybugmandy

    ladybugmandy Member

    cfs....thanks. yes, dr. ablashi is a big believer in immunopro. i wish they could just put it in like 100 capsules. i'd rather take it that way lol great to hear from you. i didn't realize you had lyme too (probably i just forgot). i have never come across liv52 before. i cannot find what its made of. looks interesting though.....thank you for suggesting it. i noticed that all of the studies they cite on their websites have appeared in indian journals.

    how is your energy level and cognitive function now? is there a reason you aren't on a higher dose of valtrex?

    will you be trying ampligen once its approved?


    ps..have you ever heard of Betacol for the liver?
    [This Message was Edited on 05/20/2009]
  16. denis321

    denis321 New Member

    Not saying this should be what you should consider next but something to keep in mind.

    From anecdotes, there are people who have taken Valcyte but who have very low ganciclovir (the active drug which Valcyte turns into) blood levels. I've heard of one person who required double maintenence dose (1800mg) to respond and another who responded to IV ganciclvoir and not Valcyte.

    Right now, it doesn't seem anyone knows what exact blood level of ganciclovir is needed to address possible viruses but if your blood ganciclovir level is close to zero, it may indicate that is one possible reason why there is no or minimal response.

    One thought I also had was whether IV ganciclovir might be better because it does not need transformation by liver enzymes to become active.

  17. ladybugmandy

    ladybugmandy Member

    denis....i would love IV drugs. i'd love to have foscarnet injected directly into my spine!

    unfortunately, no doctor here in canada would ever prescribe that for CFS. i am very lucky i was able to convince a doctor here to even write the valcyte and valtrex prescriptions so my canadian drug plan would cover them.

    long ago, i used to take 2 valcyte pills a day and i had my ganciclovir blood levels checked at that time. the doctor i was seeing at the time said it looked "ok".

    i don't think there is any point in checking the blood levels now since i cannot take any more of the drug even if i wanted to.

  18. ladybugmandy

    ladybugmandy Member

    hi all. i am still severely ill. i think the antivirals have stopped working. its all back, as if i had never taking any drugs.

    very, very hard to go on...
  19. ladybugmandy

    ladybugmandy Member

    thanks so much. that is pretty incredible that you feel better after stopping the drugs. i have heard of other people feeling as if their body was telling them top stop the AV's too.

    i stopped valcyte before - i cannot go through that hell again. i just cant.

    i read that HHV6 encephalitis repsonds to gangiclovir only 50% of the time and often foscarnet has to be used. no one here will give me foscarnet.

    i think i am going to order artesunate. dr. cheney is using it with success. i don't know what else to do....

    thanks again for caring..


  20. wldhrt

    wldhrt New Member

    I have also seen improvement after stopping the AV's. I think there may be a point where these drugs start doing more harm than good. Valcyte, especially, is a very toxic drug. I was on Valcyte for nine months (stopped per DeMeirleir recommendation), was feeling lousy most of the time on it. I started feeling better a few weeks after stopping, and was feeling really well for a while. I also had slightly elevated liver enzymes during treatment. Looking back, I wonder if that's why I was feeling so bad. I can't really explain what was happening, but I'm pretty sure we're not supposed to "herx" the whole time we're on these drugs. After a couple of months, I started on Famvir, (greedily) thinking that if I addressed any other viral activity possibly going on, I would feel even better. But the Famvir set be back as well; I took it for five months and my symptoms got progressively worse while on it - more pain and fatigue, headaches, cognitive problems, and my mood was terrible (I have no history of depression). So I stopped the Famvir a couple of weeks ago, and now everything that was good before is coming back. I can do light exercise, my recovery time is improved, and my mood has lightened again.
    I know you have stated that you're worried if you stop the AV's that you may develop some resistant type HHV-6. I'm not sure there are any studies that would back that up; I guess it's possible. But it seems to make more sense to me that just the opposite would happen - the more the virus is hit with a constant stream of the same med, the more resistant it would become. This happens with bacteria - there are antibiotic-resistant bugs out there that have mutated due to overuse of AB's. My RNase-L levels are at normal now after treatment, and according to the people I trust (DeMeirleir, my own doc), I don't need to be on an antiviral at this point. I'm at the point where I want to take a "wait and see" approach regarding past treatment, remembering Montoya's opinion that recovery could take up to a year post-treatment.
    I'm sorry you're feeling so poorly; I'm sure most of us have been there. You do have to trust your own intuition on what works best for you. If you can gain any hope from this, please know that I have been ill with this DD for 22 years, with sky high RNase-L levels. I am now at the point where I am much more active; I am able to do light exercise, have way less pain, better cognition, more stamina, and have a social life. I don't know if I will recovery fully (I don't see myself running 35 miles a week again, but who cares?), but I am more hopeful than I have been in years. It can happen for you as well.

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