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Success on Valacyclovir at 3.5 Months!! - Plus some Questions...

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by hopeandsparkles, May 27, 2017.

  1. Binkie4

    Binkie4 Senior Member

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    @boombachi I had a rereferral to Dr Bansal's NHS clinic last summer. On the paperwork that was sent I asked for biomedical treatments.

    I saw a nurse ( was told I couldn't see Dr Bansal because he only saw patients needing a diagnosis); I had had CBT years before; she offered GET which I refused. I thought she looked embarrassed.

    I saw Dr Bansal privately in April who recommended acyclovir which my gp is prescribing NHS.

    Bad reaction/ herx.
     
  2. boombachi

    boombachi Senior Member

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    Hi @Binkie4 thank you for your reply. Interesting that your doctor is happy to prescribe antivirals on nhs on his recommendation. I couldn't afford private prescription costs. Did you have to get tests to identify viruses or does acyclivor work for lots of viruses. Sorry, i should have asked both questions at once.
     
    MEMum likes this.
  3. Binkie4

    Binkie4 Senior Member

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    @boombachi
    I was prescribed it just on the basis of Consultant recommendation without viral tests called empirical use. I am not sure of the cost but I have the impression it is not expensive.
     
    MEMum likes this.
  4. boombachi

    boombachi Senior Member

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    @Binkie4 thank you for answering my questions. I am not sure if I want to try antivirals but everytime I read a recovery story in the media, it seems like they have been on antivirals. I thought I would have to pay for them privately. Good to hear they can be prescribed on the nhs if on dr bansals recommendation. I could probably save up for one private consultation. I'm guessing about £100.

    I wish you well with your treatment. It sounds like it's hard going at the moment. Hope you get some improvement soon.
     
    Binkie4 likes this.
  5. Binkie4

    Binkie4 Senior Member

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    @Hip
    Thank you hugely for your roadmap. It makes sense of a lot I was uncertain about before. A great help.
     
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  6. Janice Hargreaves

    Janice Hargreaves

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    This information about a UK consultant being willing to prescribe antivirals for ME cheers me up so much. Whooopeee!
    Thank you so much for the information. I will now carefully ask my GP if he can refer me too. Fingers crossed.
    Does anybody know of any other consultants who are willing to do this in the UK?
     
    Binkie4, NelliePledge and sb4 like this.
  7. Jenny

    Jenny Senior Member

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    Yes I was prescribed Valtrex by Dr Chee at the Royal Free. It was a long time ago and I can't remember the dose or the amount of time I was on it, but it was probably around 6 months. My GP was happy to prescribe it on the basis of Dr Chee's recommendation.

    It had absolutely no effect, good or bad.
     
    MEMum likes this.
  8. Learner1

    Learner1 Forum Support Assistant

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    Isn't valganciclovir better than valacyclovir/acyclovir for certain viruses (though it may need liver monitoring...)? One needs to match up which viruses one has with the right drug to be most effective.
     
  9. Binkie4

    Binkie4 Senior Member

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    @Janice Hargreaves @boombachi

    Just to say that while this happened to me, and I believe to at least one other person locally with a different gp, I am not sure it's to be relied on absolutely. Would hate you to feel let down.

    I have asked my gp many times for other treatments including B12 injections, with no success, just a statement that CBT ad GET are the Nice approved treatments . I asked for a referral back to the NHS clinic but nothing was offered there apart from graded exercise which I turned down. I was desperate so arranged a private appointment with the intention of paying for own medication if affordable. GP surprised me by writing a NHS script.

    I would add and I think it's made a difference that I educate my gp at every opportunity. We discuss Nice, the dangers of graded exercise, he's signed medical recommendations for a private exercise physiologist, we've covered scientific progress abroad and I even put the NY Health Commissioner's letter saying ME is a physical illness into his hands the day after it was posted online. This has taken several years.

    So good luck. Just don't think it happens automatically. Maybe I caught him on a good day or I had just worn him down!
     
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  10. Janice Hargreaves

    Janice Hargreaves

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    Thanks Binkie4. Very useful to know. I too over many years my GP has usually simply quoted Nice guidelines but very apologetically. I have tried to educate him over the years but to be honest sometimes he looks like a scared rabbit in car headlights. He seems quite overwhelmed at times even though I do try to be gentle. Honest.
     
    Binkie4 likes this.
  11. Wonkmonk

    Wonkmonk Senior Member

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    I can absolutely confirm that side effects of high-dose Valacyclovir are dangerous and can mask improvements, so the patient thinks she doesn't improve and might even feel worse in some respects after a few months of treatment (in addition to the Herx). That may be because of the side effects and actual symptoms might have actually improved substantially .

    This is because high-dose Valacyclovir side effects, especially if they affect the kidneys, are so similar to the general CFS symptoms:
    • Neurological symptoms: Dizziness, sleepiness, difficulty to concentrate
    • Fatigue
    • Back and joint pain
    • General malaise
    • Fever
    I even thought I might have to increase my dose in order to get rid of those symptoms because I thought they are CFS symptoms and might disappear with further treatment.

    Instead, I should have used the lower dose right from the start. I started right away with 6 grams a day because weigh 95 kg. But I think it's important to note that in his guidelines, Dr. Lerner states that some larger patients may need 6 grams instead of 4 grams and that they be monitored very carefully.

    I'd recommend everyone to start on the 4 gram dose and only go to 6 grams if improvement isn't satisfactory after 6 months and then have 2-4 weekly renal and liver tests.

    I'd really advise everyone to rather be cautious than too lax with this drug. In my case I developed acute kidney injury and now don't know if and when I can restart.

    This is very disappointing because from the improvements made so far, I am confident I could have made a much more pronounced recovery if I had been able to complete the 1-year course as recommended by Dr Lerner.

    Valacyclovir might be generally safe, but it is very important to be very careful.
     
  12. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @hopeandsparkles

    Thank you for sharing this. I'm so happy for you! How are you doing now?

    I just started on Valtrex (generic) 3 days ago. I've had CFS for 31 years and have never been prescribed an anti-viral. I'm hopeful, even though they say those who have had it a long time tend to not be as responsive. Any improvement would be welcome!

    I showed my doc Dr. Lerner's protocol and we were both a little nervous about starting that high. We decided to go with 500 mg X 3 daily and so far I haven't had any side effects. She has me scheduled for labs to check kidney function in 12 weeks.
     
  13. ryan31337

    ryan31337 Senior Member

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    Also wanted to say thanks for info from posters, particularly the knowledge that Dr Bansal might endorse this therapy.

    Over 20+ years with ME i've had a number of repeating episodes that doctors considered could be viral reactivation from EBV, Shingles & HSV. I've made a lot of progress in other areas recently (POTS, MCAS, gut), so the laundry list of symptoms has narrowed considerably and the 'unknown' I was left looking at seemed awfully like a viral syndrome with added nerve funkiness, like one-sided numbness, radiating limb/head pain & occasional patches of skin hypersensitivity.

    I self trialled Acyclovir and found these issues disappeared very quickly. I've done three 2x week trials now, I'm free of aforementioned symptoms during the course, then each time I stop the Acyclovir the viral syndrome and nerve complaints come back within a week. I really notice the 'sickness behaviour' too, much less energy and motivation.

    I'm thinking about waiting until I get the acute infection symptoms again and doing a test like this: https://www.medichecks.com/tests/viral-antibody-screen - perhaps with Varicella Zoster thrown in too. Any thoughts?

    I'm hoping that a doctor might be more willing to investigate and treat this if there's an acute reactivation going on, compared to say speculatively taking high doses for months hoping for an improvement in non-specific fatigue. But as yet GP's haven't gone any further than saying "that's interesting" and tutting when I say I buy prescription drugs online...
     
  14. NelliePledge

    NelliePledge plodder

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    hi @hopeandsparkles good to hear youre having some benefits from anti virals - is it ok to ask how long you've had ME and how long did it take you to get diagnosed? Just interested in this because I think I have viral element to my ME but i had mild ME for quite a few years before I got worse and got diagnosed and im in the UK so extremely hard for me to get this looked at. im looking into getting a private consultation so I can see if this can be explored.
     
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  15. Learner1

    Learner1 Forum Support Assistant

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    It certainly sounds like the antiviral may be helping you.

    Getting tested to see where you are now would be useful. Many patients seem to be dismissed by doctors because they don't have acute titers, but from what I've learned, it doesn't mean nothing is going on.

    When I finally saw a top ME/CFS specialist, he looked at my array of high IgG titers for multiple infections and said "I know what we were taught in med school, but these titers show that you have a chronic version of these infections."

    I've been on a significant dose of Valcyte for 3.5 months, and my head is clearer and I have more energy.

    Lerner's ME/CFS Treatment guide, Montoya's paper on valganciclovir, and other docs show that treating high IgG titers with antivirals can help.

    The array you mentioned is a start, but make sure you're retested for the viruses you've had trouble with in the past. EBV can cause a lot of mischief...

    You need to be on the right drug to go after right virus or bacteria. Acyclovir may not be enough
     
  16. stephano75

    stephano75

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    Hi @hopeandsparkles - thanks for your (very interesting) post. Are you still taking the valacyclovir? Just wondering if you could identify differences in ingredients/excipients which could explain the bad effects of the generic versus the brand? Also, can you tell us what brand you took which was so much better? I've just started a generic brand myself. I've been on it a week, though have started off slow (1000mg once per day at this stage). I've had some side-effects so am going to let these settle (assuming they do!) before doubling the dose to 1000mg twice per day. The doctor in the US I'm in contact with has had success with 2000mg per day, so I won't go any higher than that, at least for the three months to evaluate if it's helping. I've had CFS for twenty years; I had a solid bout of glandular fever (EBV) before getting sick and my test results show elevated titres of EBV and low NK cells (as well as a positive reading for HHV6).
     
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  17. 2Cor.12:9

    2Cor.12:9 Senior Member

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    @stephano75 - I would be interested in comparing notes here as we go along since we have similar situations.

    I've never been given an anti-viral treatment till now. I'm on day 9 of generic valacyclovir @ 500 mg three times daily. No side effects till day 5, but they seem to be gone now (fingers crossed).

    I've been disabled with ME/CFS for 31 years. Had a sudden onset and was fortunate enough to get a dx within the first 6 months (1986) - they called it Chronic EBV until the name was changed.
     
    stephano75 likes this.
  18. Learner1

    Learner1 Forum Support Assistant

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    Wondering why you're not on valganciclovir with that combination of viruses? I started on valacyclovir, but once I was fully diagnosed, my expert ME/CFS doctor put me on 1.8 g daily of valganciclovir plus 3 mg LDN.

    https://www.ncbi.nlm.nih.gov/pubmed/23959519

    Must check liver function every 3 weeks or so, though.
     
  19. 2Cor.12:9

    2Cor.12:9 Senior Member

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    I can't answer for @stephano75, but I also have HHV6 . I don't have a ME/CFS specialist, but I do have a very open minded dr who works with me. I didn't request valganciclovir because I can't afford it. I'm on Social Security and my valtrex only costs me $9 pr mo. She's doing liver/kidney labs every 12 weeks.

    I'm glad to hear your CFS dr. has you on LDN - as I am also on that combined with curcumin for inflammation/pain. Works like a charm.
     
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  20. stephano75

    stephano75

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    @Learner1 Yes - other anti-virals are possibilities if the valacyclovir doesn't help - will evaluate at three months. I believe people with EBV and HHV6 have responded to valacyclovir.
    @2Cor.12:9 - happy to compare notes as we go. I'm still feeling pretty 'off'. Have been on the 1000mg for eight days now.
     
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