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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. hopeandsparkles

    hopeandsparkles

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    Hi there, firstly I wanted to let you all know that- I have now been on Valacyclovir for over 4 months and I have seen major, MAJOR improvements!!! I used Dr Lerner's paper as a template for my treatment. First I was tested at a very reputable clinic for all the viruses outlined by Dr Montoya on the Stanford Fatigue Centre's site. I came back with sky high titres to both EBV (which made sense- I got ill at College) and also the Shingles virus. So process of elimination, we decided to get me the Valacylovir. I started taking 4g per day (8 x 500mg tablets- YUCK!!) which is exactly what Dr Lerner recommends in his paper. Managed by some miracle to get my doctor to agree to monitor my bloods/ liver function etc. at monthly intervals (this is very important by the way, in case anyone else is thinking of doing it- Lerner recommended bloods monthly or 6 weekly and they are very strong drugs so you must, MUST have supervision if you're doing it).

    Initially I had the classic 'worsening' which, I am informed by much reading around the subject is not a classic Herxheimer's response but toxicity from viral die-off? Anyway, my own worsening lasted a fortnight- which I felt may have been quite short actually as apparently this can last up to 6 weeks. I was awful but I felt optimistic at the start so could probably handle that better than what came next. Lerner said that 2-6 weeks is the norm so- I guess this is to say if your 'worsening' is short don't imagine that you're not a responder- because I most certainly have been. Looking back, Lerner's words should have given me some confidence but having been ill for 15 years I felt a lot of trepidation and was paranoid about every single stage.

    Anyway, then came the hellish bit- not going to lie! I have 2 disclaimers here which I feel I ought to share: I honestly believe now that 8 tablets/ 4 grams daily is way too much for some people- I was one of them. I know Lerner's papers say 4g is very important (and even recommend slightly more for larger people), but eventually I reduced down to 3g and felt way, WAY better- and still like the virus is being kicked into touch. The other disclaimer is this: some of these tablets will make you feel DISGUSTING. I had the generics for the first 3 months and I swear that they masked any improvements I was making. Because then I switched to a branded version and all the hideous side-effects that you will read about (severe migraines, drowsiness, nausea, leg cramps etc.) all of these went right away. Oh, one more thing: if anyone else decides to follow this protocol, for goodness sakes don't just go straight onto these tablets like I did. I was so desperate to do it that I was gung-ho- it would have been far better to start with 1g per day and build it up over a fortnight. These are serious drugs after all and you need to treat yourself with care and see how your body reacts!

    Anyway the AMAZING news is that we changed the tablets at 3 months to a brand that suited me better and also reduced the dose... and at 3.5 months- EXACTLY AS THE LERNER PAPER PREDICTS- I HAD A MASSIVE SURGE OF ENERGY which has been sustained ever since! I mean I literally could remember, for the first time in 15 years, what it used to feel like when I was first at College and I had energy in my body every day! I would also note that, despite the drug's side effects, I have not had any viral/ crash type relapses at all during this period of time.

    Now- the one thing I wanted to ask, if anyone manages to read to the end of this long message is (which I hope is encouraging to others)- has anyone else tried Acyclovir and would be it effective if I spent the next 6 months on it instead of the Valacylovir? Because the latter is proving difficult to source from legitimate places whereas Acyclovir is very easy to get hold of and sounds to be far less intense in terms of side effects, which is appealing. But obviously, having come so far, I also want to absolutely ensure that the viruses that have quite obviously been messing me up for years are being forced to recede... is that also guaranteed with Acyclovir?

    Anyone else have any questions for me or observations of their own on a similar protocol? Thanks!
     
  2. shannah

    shannah Senior Member

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    Love your results @hopeandsparkles

    Two questions:

    Are you on an anti-inflammatory with it?

    Do you have a link handy to Dr. Lerner's protocol. I don't think I have it on this computer.

    Great to hear your progress. Hope you'll post and give us an update from time to time.
     
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  3. JES

    JES Senior Member

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    Very interesting story indeed. Regarding acyclovir efficiency, valacyclovir is a prodrug of acyclovir that was developed to provide better absorption rate and less frequent dosing than when taking plain acyclovir. In the body valacyclovir will convert to acyclovir, so you will be getting exactly the same antiviral mechanism with both. The only difference is dosing, which needs to be higher on acyclovir, around 3-4 times more. I have also read that people have more side effects from valacyclovir, but it may just be because it absorbs better assuming that they are comparing it using the same dosage in mg, which is wrong.
     
    Last edited: May 27, 2017
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  4. Jesse2233

    Jesse2233 Senior Member

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    Have you ever tested for any of the Coxsackie viruses?
     
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  5. hopeandsparkles

    hopeandsparkles

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    Hey Everyone,

    Okay I'm going to answer these questions one by one: Shannah, THANK YOU! It's early days but isn't it thrilling?! I'm getting excited. Having said that I am still monitoring myself on the Lerner Energy Point Index. I am desperate to start exercising properly again as 2 stone heavier than I ever used to be due to being a *house sloth* (my own comic, self-mockery this terminology!) for too, too long. However, yes- unbelievable really, that my government, my medics, everyone around me really were perfectly happy to let me lollop around in heaps of pain and severe fatigue for more than decade when in fact, a course of antivirals could have nipped it in the bud. I guess it's very important not to get bitter about that though, and press forwards and help support all the research etc. I really want to do some advocate work now going forwards... so Shannah, here is the Lerner paper link. Since I'm new I'm hoping the moderators are cool with me posting a link (I have officially now posted three times and I think that's what they need to know I'm not a spammer)... hang on...

    So... I'm pretty sure that what I printed came via a direct link on the Stanford University website...which takes you through to the Martin Lerner site- I think I printed study number 10 but I'd have to check. I feel like there was just a PDF I found of this somewhere though (please bear with me- I am about to go for my Sunday lunch but I will try and find the other link for you, too).

    http://www.treatmentcenterforcfs.com/professional_publications/index.html

    The other site that explains it blow-by-blow is Sarah Myhill's website...

    http://www.drmyhill.co.uk/wiki/Valacyclovir_in_the_treatment_of_post_viral_fatigue_syndrome

    When deciding which antiviral to go on, I found another document online somewhere which breaks it all down virus by virus- which some internet sleuth had put together having found out as much as they could about Montoya etc.
    I'll also see if I can find that when I get a proper hour or so to look for it...

    JES: thank you so, SO much for explaining about acyclovir! I really appreciate it very much indeed. I am wondering about dosing for the second 6 months of my treatment- in order to continue with high-impact viral suppression then, would I just have to take rather a lot of acyclovir, like say, 6 grams or something? I think I'm going to have to sit down and do the maths on it. But yes- I agree- the fewer side-effects associated with it are massively appealing. I couldn't face what happened on the generics again- but I must say that however horrendous that was it is all proving to be more than worth it!

    Jesse2233: No, I wasn't tested for Cocksackie. So I guess that was my exaggeration there when I said, "all the viruses' that Montoya's team are laying out. What we decided collectively as a family was that, since I got sick at College- and there was a 'cluster' of friends of mine who all got Glandular Fever the exact same couple of months that I fell ill, we decided that EBV was the likely culprit. So we had all the Herpes viruses tests that are laid out on the Stanford website. Also, because what I have got every few months for 15 years have been- yes- "crashes" (like post-exhertional giant 'stitches' in my body that took weeks/ months to recover equilibrium from again) but also- VIRAL MALAISES- so as the illness progressed I was getting more and more glandular fever style viruses that lasted and lasted months and months (to the point where I was getting totally demoralised and even borderline suicidal at a couple of points)... all fingers in my case really pointed to EBV. Had that not come back as sky high titres then we would have done all the other ones, too, like Cocksackie.

    I don't know if this is helpful at all but it does strike me that using one's own in-built sleuth to factor in possible causes of infection could help speed up the testing process? But honestly, that's only my guess. I think that, for instance, I knew one guy who get ME/CFS after surfing in some mucky waters- in his case looking at the more water-born infections would make sense; ditto I know some country types who got ill- well, in their cases I reckon delving into Lyme would be a good starting point. But then- weird infections do happen- we know relatively little about all these things and as Montoya said- there may even more other Herpes viruses that have not yet been identified. So... sorry I can't help on that one but certainly if any of you can afford to have thorough testing I think it's absolutely the way to go.
     
  6. Binkie4

    Binkie4 Senior Member

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    Hi everyone
    Thank you for posting your experiences @hopeandsparkles .

    Am in U.K. So very little knowledge around.
    Was prescribed acyclovir after ME getting worse. Felt terrible on it- so didn't take last dose yesterday, none today. At a bit of a crisis point- do I continue? I am a perseverer but........
    Anyway just wondered about the generic issue. Box just says Acyclovir tablets- actavis. Is this a generic? Have been taking 3 x 400mg daily for 4 weeks. What would be a branded version?

    Honestly cannot manage these side effects so any advice welcome.
     
  7. TenuousGrip

    TenuousGrip Senior Member

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    Bless you.
     
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  8. sb4

    sb4 Senior Member

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    Do you think that the dieoff you experienced was similair to the dieoff in say monolaurin (lauricidin)?

    Most people say the die off is too much and quit too soon. Some get a little better after a while, some don't.
     
  9. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    So happy for ya!
     
  10. Binkie4

    Binkie4 Senior Member

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    @hopeandsparkles
    and everyone

    Just to say am back on full dose after 2/3 dose for 2 days. Just gave me a few hours break from the nausea etc.

    I hope to be able to continue and get real benefits.
     
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  11. Binkie4

    Binkie4 Senior Member

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    @sb4
    Not sure this is meant for me @sb4 . I haven't experienced a herx previously so have no comparison point.

    Am now back on full dose with much milder symptoms. Just reduced dose slightly for 2 days then back up. I think the severe herx was probably coming to an end: doubt if reducing for 2 days would have that effect.

    It was really unpleasant and lasted 3 weeks so I hope that means a good outcome.

    If anyone can indicate path to be expected now, please do. I don't have a review with my Consultant for about 7 weeks.

    @hopeandsparkles -hope you are continuing to do well. Your doseage does sound very high. Mine is 400mg x3 of acyclovir daily which is what this Consultant usually prescribes. Am also in touch with an Australian member taking acyclovir whose dose is 400mg x3/4 daily. Her herx lasted 10 days ( sounded severe), mine 3 weeks and was horrible. May not be quite over. I cannot compare with valacyclovir. I believe Dr Myhill prefers valacyclovir.

    Good luck whatever you decide and let us know how you get on.
     
  12. hopeandsparkles

    hopeandsparkles

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    Hi Binkie4, Markie and Sb4, sorry for slow response. I actually found Phoenix Rising a little overwhelming to start with- so much to say, so much to read!

    :)

    Okay as to the monolaurin I really quite honestly have no clue. The only papers I have read have been the ones about antiviral suppression- Dr Lerner's papers and any bits and bobs that are lying around about how Dr Montoya's team are treating people. So... your guess is as good as mine- however, I imagine someone on here would be able to tell you, @sb4, if you started a thread about it or something...?

    Shannah- I totally forget to mention that I am not on an anti-inflammatory- is that commonplace? It wasn't suggested in any of the literature so it never occurred to me.

    @Binkie4 I simply followed the papers that are online by Dr Lerner- the man who pioneered this treatment. 4g daily was what he believed to be important. However, having read a few more threads on different parts of Phoenix Rising it seems that other people followed similar protocols- but many found it too, too much. Which is something I really relate to- I couldn't cope on 4g but 3g does seem to be working.

    I honestly don't know whether your acyclovir was a generic or not- I guess if there is the name of a brand on the box then that would suggest it's not- generics generally don't have brands on the box. But in terms of other people working out which brand would give them fewer side effects- there are, again, a few different threads on this site that talk about antivirals- some of them mention some of the brands that Lerner/ Montoya favour which are meant to have fewer side effects but you'd have to scroll through yourselves.

    The real truth is: we're all built so differently, you will only know by finding out. I was in a lot of discomfort on the generics which is why we decided to try a different one. In my case, I tried Ranbaxy and all the horrible side-effects stopped almost immediately and then all the miraculous gains I'd made by being on them revealed themselves- it was like a curtain being drawn- I could finally see the light!!

    Yes- very, very true from all I've read that too many people give up too soon. However, whilst I can't say which brands will work for others- if you ARE able to start on one of the branded versions that are being talked about as 'kinder', or simply doing the acyclovir which sounds to have fewer side-effects, then it strikes me that most people will be less likely to quit. The difference for me personally between the generics and the Ranbaxy was huge- on the latter I couldn't cope, felt disgusting and miserable and on the latter feel human and whole and happy- barely as if I'm even on any drugs.

    Hmm... I feel there was something else worth saying here, what was it? Oh yes! It was this: it seems that these tablets are proving quite the miracle cure for many, many people. However- the main disclaimer is this: however much you tell yourself at the beginning that you are prepared to grit your teeth and get through anything- after all the pain you've been in for so many years, etc. There's a HUGE difference between psyching yourself up to and actually being in the midst of nausea/ migraine/ cramps/ drowsiness/ etc. for months on end. I was full of how I could get through anything, having been through ME all these years and multiple severely demoralising, months-long viral crashes. They were horrendous in themselves. But having gone through this now I can truly understand why people quit too soon.

    I also believe that if you're on a version of these tablets that doesn't suit you- it is likely to be entirely MASKING any improvements you may well be making.

    I don't know if I've been much help here. I sort of feel it would be super great if those of us who've done these protocols could somehow put together a thread about the subtleties of it. Maybe I will do that next time? Do you think that would be good? There is no road map exactly as we are all going to react differently, but certain things I think definitely hold true about it. I might draft a bullet point list of tips and post it in a separate thread- what do you guys think?
     
  13. Hip

    Hip Senior Member

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    The problem with acyclovir is its low oral bioavailability, around 10% to 30%, so much of what you take orally is wasted. This is why people often find valacyclovir more powerful, as this has an oral bioavailability of 55%, and then is converted to acyclovir in the body. This study say that valacyclovir is 3 to 5 times more bioavailable than acyclovir (and virtually all the valacyclovir is converted to acyclovir in the body).
     
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  14. Hip

    Hip Senior Member

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    By the way, on your other thread I was asking this question about your very rapid recover in only 3.5 months.

    That seems much faster that the recoveries detailed in Lerner's study (see table 3 at the bottom of this post), where it seems the improvements take place slowly over a few years.

    You mention that Dr Lerner's says an energy surge is expected at 3.5 months; can I ask, where did Dr Lerner write that? Was it in one of his papers?


    I am interested in this, as I try to maintain as accurately as possible the following document about ME/CFS treatments: Chronic Fatigue Syndrome — A Roadmap For Testing And Treatment.

    That roadmap document already details Lerner's treatment for herpes virus linked ME/CFS, but my understanding is that it takes a couple of years to get improvements on Valtrex.
     
    Last edited: Jun 8, 2017
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  15. Binkie4

    Binkie4 Senior Member

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    @Hip

    Am interested in your post as am currently on acyclovir prescribed by Dr Bansal at end of April. Just about survived a very severe patch of 'herxing equivalent ' and am starting week 6 of treatment.

    Am not a scientist so am not sure what the comparison of bioavailability between acyclovir and valacyclovir means for efficacy, time before effects felt etc. I feel better than I did while severely herxing but not yet back to ' my normal'; the thought of years on this does not appeal.

    Dr Bansal has written to me that acyclovir is very well tolerated. I know that Dr Myhill prefers to prescribe valacyclovir but acyclovir is what Dr Bansal prescribed for me on the basis of empirical testing.

    Thank you for your road map, quickly glanced at but I will read it thoroughly.
     
  16. Hip

    Hip Senior Member

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    Bioavailability is similar to the idea of absorption: what percentage of a drug gets absorbed into the body and circulation when the drug is taken orally. Some drugs are better absorbed by the stomach intestines than others.

    Because acyclovir is 3 to 5 times less absorbable than valacyclovir, I think you would need to take acyclovir with 3 to 5 times the dose you use for valacyclovir, in order to compensate.
     
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  17. Binkie4

    Binkie4 Senior Member

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    @ Hip

    Thank you. I am trying to work out what this means.
    I am confused by the fact that I have been prescribed 400 mg x 3 daily of acyclovir. I know one other person prescribed the same dose by Dr Bansal, and another in Australia via the forums taking 400 mg x 3/4 times daily so the dose seems quite usual.

    I think @hopeandsparkles has been taking 4 g a day of valacyclovir, (reducing to 3 g ) as per Lerner advice; if I divide my acyclovir dose by 3-5, say 3 for convenience, to allow for bioavailability that means my doseage is equivalent to 400 mg of valacyclovir which is so much lower a dose. I hope I've understood that correctly.

    I suppose I'm wondering what the dose needs to be for efficacy, and side effects.
     
    Last edited: Jun 8, 2017
  18. Hip

    Hip Senior Member

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    @Binkie4 This article says that: valacyclovir 250 mg four times daily = acyclovir 800 mg five times daily.

    So if you want to follow Dr Lerner's antiviral dosing of 1 gram of valacyclovir four times daily, that would approximately equate to taking 3 grams of acyclovir five times daily.
     
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  19. Binkie4

    Binkie4 Senior Member

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    @Hip Thanks again.

    I think I now know the questions to ask my Consultant in July. My GP says he has never prescribed acyclovir for longer than 7 days so I need to take it to Dr Bansal.

    Strange that we can be prescribed such different strength doses.
     
  20. boombachi

    boombachi Senior Member

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    @Binkie4 are you seeing dr bansal on nhs or privately? Do you pay for antivirals?
     

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