quick poll for current and former VALTREX users please

Discussion in 'Fibromyalgia Main Forum' started by bigmama2, Jun 25, 2007.

  1. bigmama2

    bigmama2 New Member

    hi and thanks for reading!

    just wanted to do a quick poll for current and former VALTREX users to try to see how much is does or does not help us CFSers.

    1.how long have you been sick w cfs?
    2.how long were you on Valtrex?
    3.what dose?
    4.did you have a worsening of flu like symptoms/herx?
    5. did your viral titers go down substantially?
    6. did Valtrex help you?

    thank you very much!!!

    I'll start-
    1. 12 yrs w cfs
    2. 3 weeks on valtrex so far
    3. 500 mg once a day
    4. yes- flu sympts
    5. dont know yet
    6. dont know yet

    bigmama2
  2. bigmama2

    bigmama2 New Member

  3. ask2266

    ask2266 Member

    1. Been sick one year
    2. Been on Valtrex one month
    3. 1000 mg, 3x per day
    4. herxed a little but not too much because came straight to Valtrex after 6 months of Famvir, which caused a HUGE herx
    5. don't know yet about my titers re: Famvir or Valtrex use
    6. So far, so good, but I'm not 100% yet.
  4. bigmama2

    bigmama2 New Member

    for answering my poll! I appreciate it!

    bigmama2
  5. Kathryn51

    Kathryn51 New Member

    1. 10 yrs with CFIDS/FMS
    2. 4 months on Valtrex, currently on a break
    3. 1 gram 2xday
    4. yes, for the last 3 months I felt I was in the worst crash ever - more pain, weakness, breathing problems
    5. don't know yet
    6. don't know yet

    Within 2-3 days of going off of Valtrex, the antibiotic and all the supplements, I'm back to my normal pains, cramps, twitching, fogginess. I think I was releasing too much toxins way too fast. My body has a hard time processing anything.

    Hope this answers your questions. Kathryn
  6. siebertesther

    siebertesther New Member

  7. Taradonelle

    Taradonelle New Member

    Hi BigMama,

    My poll answers are below.

    Tara

    1.how long have you been sick w cfs?
    At least since highschool - officially diagnosed about 5 years ago in late 20's

    2.how long were you on Valtrex?
    6 months

    3.what dose?
    1 g, 3 times a day

    4.did you have a worsening of flu like symptoms/herx?
    No herx-like symptoms

    5. did your viral titers go down substantially?
    My IgG titers for both EB and HHV-6 went down, but remained abnormally high. Interesting at the end of being on Valtrex my EB early antigen titre was high and it did not test high before Valtrex - no idea what to make of this.

    6. did Valtrex help you?
    Yes, Valtrex helped me. I would say I saw about a 15% improvement.
  8. wld285

    wld285 New Member


    I will be watching this thread with interest.
    Tomorrow I will be starting Valtrex 500 mg. tid

    Have had this many,many years. First diagnosed in the early 80's

    I am really nervous about this since I still work partime, and also I want it to work so bad.

    Good luck everyone!
    Linda
  9. cherylsue

    cherylsue Member

  10. cherylsue

    cherylsue Member

  11. znewby

    znewby Member

  12. ladybugmandy

    ladybugmandy Member

    i am glad this thread was started!

    1.how long have you been sick w cfs?
    15 years

    2.how long were you on Valtrex?
    3 weeks (but took valcyte before)

    3. what dose?
    1 g 4 times a day

    4. did you have a worsening of flu like symptoms/herx?
    maybe a little worsening of brain fog and knee pain but i am not sure..hard to tell..everything is a blur memory-wise

    5. did your viral titers go down substantially?
    don't know yet

    6. did Valtrex help you?
    don't know yet.

    sue:)
  13. marti_zavala

    marti_zavala Member

    1.how long have you been sick w cfs?
    9 years

    2.how long were you on Valtrex?
    First Time: 1 week @ 1gram 3 x day
    Second Time: 2 weeks @ 750mgs 2 x day
    Now: Acyclovir 800mg per day

    3. what dose?
    see above

    4. did you have a worsening of flu like symptoms/herx?
    No. None. Zilch. Ever.

    5. did your viral titers go down substantially?
    Could not get proper testing due to uncooperative docs.

    6. did Valtrex help you?
    Valtrex was like I was in remission. Cannot get Doc to prescribe Valtrex due to insurance limitations so I got acyclovir. Doesn't work as well but still I am great compared to without - nearly bedridden, sore throat, flu, etc. etc.

    Note: Does not cure me - still have tons of other issues - but I would not want to be without it.

    Marti
  14. basketmom

    basketmom New Member

    1.how long have you been sick w cfs? 3 years
    2.how long were you on Valtrex? 3 months
    3.what dose? 2 grams 4 x per day
    4.did you have a worsening of flu like symptoms/herx? yes, for 1st 8 weeks
    5. did your viral titers go down substantially? don't know yet
    6. did Valtrex help you? yes, I am now starting to feel better than before I started the Valtrex as long as I limit my activities.

    Mary
  15. LouiseK

    LouiseK New Member

    Can any of you tell me under what conditions are your doctors willing to prescribe these high doses of Valtrex? Also, does your insurance agree to this? I have slowly "tricked" my md into prescribing 2 gr daily but I want to take a lot more.

    Did you present research to your doctors or what??

    Thank you so much to anyone who is willing to share. I think most of our doctors would not prescribe like this without some "encouragement".

    Best wishes,
    Louise
  16. netransplant

    netransplant New Member

    I have the worst EBV IGG titers two ID doctors have seen (>10,240). Also tested positive for HSV-1 in July 2008. Had EBV IGG titers of >640 in April 1990. Lived okay for the last 18 years until the end of July 2008. I have never taken an antiviral but my ID suggested Valtrex. Started it on 7/29. Within two weeks, I felt worse and had major red welts throughout my body. I stopped it on 8/18. Since my HSV-1 keeps creeping up, the ID recommended that I restart the Valtrex. I started with 2,000 mg a day (1k a.m., 1k p.m.) on 8/29 and within days, I had shortness of breath, wheezing, dizziness, extreme fatigue and on 9/10/08, I reduced the dosage to 1,000 a day. I seem to be tolerating the 1,000 mg a day pretty well. My SOB has diminished substantially. Honestly, I feel worse being on this drug. I am so bad that I am unable to work. People who know me and my zest for life, are shocked and very concerned about me. They know I am sick because I am not working, have missed weekend trips, and volunteer opportunities. As someone who loves to clean, I had to hire someone to clean my one bedroom condo. I decided to research how others felt on Valtrex. I was comforted to know that it could take time. I have invested almost three weeks of suffering so I am trying to be optimistic. There is a saying, 'you have to get worse before you get better.' Well, I am there and your posts have given me comfort knowing that I am not alone and the drugs may take months to work. Since I have been living with EBV since 1990, I am afraid it may take years to work. Please continue to post comments about Valtrex because this may be the only medication to help. One of my ID consults said, "There is no magic bullet for EBV, you would be better off if you got breast cancer or HIV. They have magic bullets." Having EBV is much worse than my bout with melanoma and a tumor resting on my carotid artery, which I have to have monitored a couple of times a year. I pray for a cure. I know the NIAID is researching this insidious virus. Also, it appears the Japanese government may be further along in the research than our own country.
  17. SpecialK82

    SpecialK82 New Member

    1.how long have you been sick w cfs?
    - had FM 11 years, CFS for last 2 years

    2.how long were you on Valtrex?
    - Just started 4 weeks ago

    3.what dose?
    1 gram 4 x daily

    4.did you have a worsening of flu like symptoms/herx?
    - yes, it's still going on - increased weakness, low energy and also having GI problems

    5. did your viral titers go down substantially?
    - don't know yet

    6. did Valtrex help you?
    - don't know yet

    Thanks for starting this poll!

    Kristina
  18. ladybugmandy

    ladybugmandy Member

    updated post:

    1.how long have you been sick w cfs?
    15 years

    2.how long were you on Valtrex?
    6 months (am taking low dose valcyte too)

    3. what dose?
    1 g 4 times a day

    4. did you have a worsening of flu like symptoms/herx?
    maybe a little worsening of brain fog and knee pain but i am not sure..hard to tell..everything is a blur memory-wise

    5. did your viral titers go down substantially?
    no

    6. did Valtrex help you?
    i am 10-15% improved but am not progressing.

    sue:)
  19. joanierav

    joanierav Member

    i have been on valtrex for supressive therapy for oral herpes simplex, after i had a mouth sore cultured 8 yrs ago. the culture came back positive for "oral herpes simplex" (non sexual) i was dx with cfs 14 yrs ago, and suffered terribly with the mouth sores , was one of my first symtoms when i got sick. doctors did prescribe different anti viral at the time, famvir, acyclovir, etc but was never on them long enough. until i went to an infectious disease doctor and he cultured a lesion and i was then put on the supressive therapy 8 yrs ago. 500 mil. once a day. it has kept the herpes infections at bey all this time. i did get shingles several yrs ago and it was a very light case, and i was told that it was because i was on the valtrex therapy. when i had the shingles tho, i took 500 mil 5 times a day , i think for several wks. no i havent seen any improvement in my cfs symtoms using the valtrex at all. joanierav
  20. Timaca

    Timaca New Member

    1. I've been sick for 5 years.

    2. Started acyclovir (the active ingredient in valtrex) in August.

    3. I'm on 800 mg per day.

    4. Got the "flu" the next day. Got really ill. Including shoulder and knee pain.

    5. Don't know yet. Valcyte did drop my HHV-6 and EBV antibody titers. But they went back up when I came off the valcyte.

    6. Valcyte did help me. Don't yet know if acyclovir will or not.

    Thanks for starting this poll. It is helpful to know that some people got really hit by the valtrex and were sick for several weeks to months before getting better.

    Timaca