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Lessons from ME/CFS: Finding Meaning in the Suffering
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Acyclovir

Discussion in 'General ME/CFS Discussion' started by Katyw, May 21, 2014.

  1. Katyw

    Katyw

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    Hi

    Just wanted to get some advice as I've recently been prescribed acyclovir but haven't started taking it yet. I'm in the UK and this has taken a while for me to get!! It was prescribed remotely by my ME doctor so I haven't been able to ask many questions. I'm going to be starting on x5 800mg tablets daily. I just wanted any input as to people's experiences with this. Or any general advice. Thanks in advance.

    K
  2. ukxmrv

    ukxmrv Senior Member

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    I didn't do very well on Acyclovir but did on Valtrex (Valaciclovir). The Acyclovir made me feel sluggish, slow and poisoned and had no effect on my ME viral symptoms. The Valtrex had a good effect from the first week.

    Not sure why that is. Other ME patients I know who have been seen at the Breakspear report either side effects to the Acyclovir or no good effects.

    I'd start off slowly if I was in your position and then ask to switch to Valtrex if you find the side effects too much or have no good effects.
    Good luck.
  3. Katyw

    Katyw

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    Thanks for that. Doesn't sound very nice, already feel sluggish and poisoned! Well, I have to give it a go as it's the only doctor who will prescribe anti viral medication. I will definitely start slowly on them though.

    I hope she will let me swop to Valtrex if not. I know that I can get these online if not but rather be under a doctor.

    Thanks again
  4. minkeygirl

    minkeygirl Senior Member

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    I had absolutely no problems with the Acyclovir. I noticed an improvement with it too. Very subtle but I noticed it for sure.

    I had a HORRIBLE time with Valtrex. I didn't sleep more than an hour a night and it totally altered my personality. It wasn't until I was shrieking in anger on the phone to someone at my bank that I realized something was off.

    I totally agree with @ukxmrv and start very slowly. I started I think with 400 mgs a day and went up every 4 or 5 days. My maximum was 2400 mgs/day I think.

    I have some Famvir which I will try again. Had too many things going on and didn't know what was what. And my understanding is that Famvir is broader in what it treats and is not so hard on the kidneys.

    It is all trial and error with A/V's.
  5. Iquitos

    Iquitos Senior Member

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    When my ataxia got so bad I couldn't walk without holding on to someone or something I tried acyclovir at 800 mg, one time.

    I immediately spiked a fever of 104 F and got the worst headache of my life. It felt like an "Alien" was trying to burst out of the back left part of my skull.

    With diclofenac and a bag of ice, we brought down the fever and finally soothed the headache in about 18 hours.

    A day later I started again, with 400 mg and over the week, quickly built up to 800 mg/day, then to 800 mg twice/day.

    After a month I went up to 3 x day and after another month, to 4 x day. It took about 6 weeks to start noticing a difference, but slowly over about 6 months the ataxia reduced by around 90%. I had liver function tests during the first year of taking it and they were never far off normal so I stopped getting those tests.

    I've been taking it for 3-4 years now and feel it helps a lot with neuro problems and immune problems but doesn't do anything for the PEM and lack of strength and stamina.

    I'd say start low and go slow and be patient for the results to show.
    maryb and minkeygirl like this.
  6. minkeygirl

    minkeygirl Senior Member

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    Low and slow with everything we take. That should be our mantra!
    JBB and maryb like this.
  7. Katyw

    Katyw

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    Thanks Minkeygirl, that's good to know.

    I guess it's very dependant on the individual.

    I actually spoke to my doctor today and she's now saying only to take x1 800mg a day. I don't even know if this is enough. What do you take a day?



  8. Katyw

    Katyw

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    Hi Iquitos, thanks for replying too-it's a great help. I'm glad it's helped some of your symptoms.

    Would you say you didn't start feeling the affects until you were on a higher dose?

    I've now been prescribed a lower dose, of 800mg a day so I'm not sure if this will work - will give it a try though.

    Wow, definitely don't want the alien exploding out of the head feeling!!!

    Will start slow xx
  9. minkeygirl

    minkeygirl Senior Member

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    Sadly, I am not taking any a/v'sr right now because every one of them royally messed up my sleep. Even 200 mgs of acyclovir kept me up all night. I'm taking an immune modulator and after I've been on that I'm going to give Famvir another shot.

    I can't tell you if 800 is enough although I think there are some people here on lower doses. If you search around you might be able to find what others are taking. I can tell you it's best to divide it into 2 doses per day.
    Katyw likes this.
  10. minkeygirl

    minkeygirl Senior Member

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    @Katyw I want to tell you that my results were really subtle. I got exhausted just talking. A neighbor of mine would stop by every day after he got off from work and we would talk for awhile and that is where I noticed the difference.

    I was thinking, man I'm going to really pay for this talking every day but I never did. And boy talking is huge! So it wasn't like I could go work out or do a lot, but it was really worth being on it.

    Why did your doc tell you to stay on such a low dose?
  11. Katyw

    Katyw

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    Its great that you were able to talk a bit more, that's a nice thing to be able to do with no payback! It's not much to ask, a good chat with someone! This illness can be so limiting! I would be happy with any results at this stage.

    We (doctor and I) had an email conversation tonight and she recommends 800mg a day for at least 6 months. She would like me to do a high dose for the first week (x5 800mg) as at the moment I have a active chronic infection.

    K
  12. minkeygirl

    minkeygirl Senior Member

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    I would still go up to that dose very slowly. Would she give you more so you could do that?

    I personally would never start that high off the bat. I'm not sure why though she would start at that dose for a week then drop it down so quickly. But I'm not a doctor so who knows.

    I think Montoya used to recommend about 2400 mgs/day.
  13. Katyw

    Katyw

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    Yes I think so too.

    It's really difficult as being in the UK I don't get many options for prescriptions of medication. I've had to go to a private doctor and there is really only a handful who specialise in ME in the while country! I think I will pay for a telephone consultation to query this. Maybe she wants me to start on high dose as I've got a really bad current infection.

    I read Dr Learner's protocol in relation to valaciclvoir and he recommends high dosage (1g every four hours) for at least 6 months.
  14. minkeygirl

    minkeygirl Senior Member

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    I think different docs have different protocols.

    My doc would not give me acyclovir so I got it on my own. Many of us have docs who just don't get it so we have to be creative.
  15. SOC

    SOC Moderator and Senior Member

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    @Katyw,
    I'm puzzled by your doctor's use of oral acyclovir. Valtrex is a prodrug of acyclovir with better bioavailability. It turns into acyclovir in your body and gets more of it into your system. That's why it was created.

    Why would your doctor use the less effective medication? More medication and consequently more side effects for less medication getting where it needs to go. It makes no sense to me.
    http://en.wikipedia.org/wiki/Valaciclovir
    IV acyclovir is another matter, of course, since it is going directly into your blood not through your GI system so the bioavailability issues are different.

    ETA: Daughter and I have taken Valtrex at substantial dose for years with no side effects whatsoever.
  16. Katyw

    Katyw

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    Hi Soc, I'm not sure why she has prescribed this and not the better absorbed ones! Maybe it's cheaper?!!! I don't know.

    I will ask if she prescribes Valtrex or Famvir.

    I was going to get this myself but have managed to find a doctor who prescribes anti viral medication can at least check up on things with regards to liver function and possible side affects. I'd rather this than doing it blindly.

    I've got them now so really want to start on something bar least. Do you think it's no worth taking these?
  17. minkeygirl

    minkeygirl Senior Member

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    @Katyw. Follow your doctors advice. Start with acyclovir and if you want to move on to something else ask the doc.

    Although my doc would not RX it for me she did run labs to make sure I was ok. I got the acyclovir because that was all I could afford. When I found a doc who would RX I tried other I tried them with disastrous results.
    As you've heard, people have vastly different reaction to medications and supplements. Don't let anyone undermine what your doctor is doing and make you doubt or second guess.

    What you can do for yourself is get information and present it to your doctor for the future.
    Katyw likes this.
  18. Katyw

    Katyw

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    Very true Minkeygirl- thank you. I appreciate the input x
    minkeygirl likes this.
  19. SOC

    SOC Moderator and Senior Member

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    @Katyw, if you want to be sure I'll see your question, put the @ in front of my name. That way I'll get an alert. Otherwise I might miss it. These memory aids are so helpful with our cognitive dysfunction, eh? :)

    If you've got the acyclovir, you might as well take it. It just seems to me that Valtrex would be safer and more effective. If I were in your shoes, I'd ask the doc to prescribe Valtrex in the future. The acyclovir may be cheaper, but since the Valtrex (valacyclovir) is 55% more bioavailable, you can take less and get the same amount of acyclovir in your system. So the cost might balance out in the long run.

    Valtrex has the same side effect profile as acyclovir, but you can take a lower dose so the side effects could be less likely or less severe. Or you can take the same dose and get more med in your system.

    FYI -- It's wise to drink lots of water with Valtrex to avoid kidney stones. I assume the same is true for acyclovir.
  20. minkeygirl

    minkeygirl Senior Member

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    @SOC, I had a horrible reaction to Valtrex so to just say "Oh that is better" is not always so. And sometimes money is a huge issue so whether something is better or not is an individual decision based on many things.

    I also had problems with Famvir and now I have problems with Acyclovir. If I had to choose which one I would take it would be the Famvir since it works better and you don't have as many kidney issues with it.

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