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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Acyclovir

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

  1. SOC

    SOC Senior Member

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    I never said, "Oh that is better". I said that it has a higher bioavailability and is considered slightly safer. Those are the facts.

    Of course, individuals have different responses to different meds. What gives me no trouble may give you side effects, and vice versa. I never said Valtrex is always better for all patients. No one can know that. I gave Katyw some known facts about the medications which she can use to discuss with her doctor and make her own decision.

    Indeed, money can be a huge issue. That said, a lower dose of a more effective but more expensive medicine can cost less than a higher dose of a less effective medicine. It depends on dosage and cost. It's worth looking into rather than dismissing out of hand without getting the facts.

    Famvir has also been effective in some cases. It, too, is worth looking into. I only mentioned Valtrex because it is the same drug (once it's in the system) as acyclovir. I wasn't trying to suggest a different drug, just that she look into the more bioavailable form of the same drug.

    Not everyone has kidney issues with Valtrex. It is a possibility, of course.
     
  2. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @SOC, excuse my terminology. You said ask if I were you I'd ask for Valtrex and gave the reasons.

    I said it's not always that simple. What we all know is we are all It is not up to us to second guess what @Katyw doctor said which could undermine her confidence. That is the point I am making
     
    Katyw likes this.
  3. Iquitos

    Iquitos Senior Member

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    @Katyw Yes, I would say I didn't notice the benefits until I reached a higher dose. But I was determined to get to 3200 mg/day, over time, because that's about the best dose, taken 4 x/day, to keep the drug at an effective level in the body. I did start to notice some benefit after I reached 800 mg 3x/day at around 6 weeks. As mentioned above, they were very subtle at first and came on so slowly that I often wouldn't notice I was better for a week after my caregiver thought he noticed some improvement.

    Now I take 800 mg 3x/day for a total of 2400 mg/day -- mainly so I don't have to set an alarm to take it during the night. At that time I didn't sleep through the night anyway so it didn't matter but since starting medical marijuana I sleep at least 5 hours at a time and I feel a good night's sleep is just as important as the level of antiviral meds in my system.
     
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  4. Katyw

    Katyw

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    @SOC thanks for this tip!

    I re read the letter from the doctor and she feels that many of her patients have tolerated aciclovir well and had good results. You never know so its worth a try :)
     
    SOC likes this.
  5. Katyw

    Katyw

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    @minkeygirl Thanks for your advice, I'm definitely feeling more confident to try my doctors advised choice. If it doesn't work for me, I can try the other types
     
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  6. Katyw

    Katyw

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    @Iquitos Thanks, I will definitely aim to work up to a higher dose but slowly. I am going to talk to my doctor via a trephine consultation as I don't agree with the high dose (x5 800mg) for one week and drop to x1 800mg for the rest!


    Thanks for everyone's input
     
  7. minkeygirl

    minkeygirl Narcissism = lack of self awareness

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    @Katyw It's all about trying things. if one thing works good, if not move on to something else. That's what all of us do. Trial and error. Keep me posted.

    BTW. You can tag a bunch of people in the same post. Saves time
     
    Katyw likes this.

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