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August 8th - What is the one thing about suffering with severe ME that the world needs to know?
Andrew Gladman brings our coverage of the Understanding & Remembrance Day for Severe ME, airing the voice of patients ...
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  1. aussie777

    aussie777

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    For those who have CFS, and have not tried any anti-viral treatments such as Valcyte, why haven't you? I'm going to see an infectious disease doctor and bring up anti-virals. Is it treatment cost that usually holds CFS patients back? Side-effects? What are the reasons not to try anti-viral treatment?
  2. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi aussie777,

    Of course many here have used anti-virals. First you need testing to see what viruses you have in order to know what anti-virals, if any, would be appropriate.

    Some anti-virals such as Valcyte are extremely expensive and require close lab monitoring due to potential side effects. Many who take anti-virals report months of feeling a lot worse before feeling better. This can put patients off especially if they live alone and have no help.

    Also, many docs are not willing to test for viruses and prescribe anti-virals so actually getting a prescription can a be a problem.

    There are also quite a few here who take herbal anti-virals. I think most patients do consider anti-viral treatment but it is not always appropriate, it may be cost prohibitive, or they may not be able to find a knowledgeable doctor.

    Good luck with this,
    Sushi
    Valentijn, SOC and heapsreal like this.
  3. SOC

    SOC Moderator and Senior Member

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    Valcyte has potential severe side effects, the worst being neutropenia and liver problems. Both are slow to develop, so careful blood monitoring (with basic lab tests) allows you to avoid them because you can reduce dosage or quit the medication as soon as you see signs of either problem developing.

    Unfortunately most doctors, including some ME/CFS specialists, are afraid to prescribe Valcyte because of those potential serious side effects. If they prescribe 3 months worth of Valcyte and you don't come in for the lab tests every month, you could become severely ill. They don't want to be responsible for that. Or more likely, they don't want to risk being sued over that.

    Dr Lerner will often only prescribe enough Valcyte to get you to your next lab. So, no labs, no Valcyte. However, that means he has to see you, evaluate your labs, and write a new prescription every 4-6 weeks. Many doctors are not willing to put that much effort into each patient, so they just flat refuse to prescribe Valcyte at all.
  4. minkeygirl

    minkeygirl Senior Member

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    I have been taking Acyclovir for about a year with some breaks after my labs showed I had HHV-6, CMV, EBV. and a few others. My doctor will order labs and make sure I'm ok but she will not RX it for me so I got it using other means. It is the one thing that has absolutely helped me.

    After my next labs I'm going to look into Famvir or Valtrex

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