CFS: antiviral update

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Mar 17, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hi all. just wanted to let you guys know that after 1 3/4 yrs on antivirals (only one year on both valtrex + valcyte, the rest of the time on just valcyte), i am really starting to feel better.

    i reported before that the improvement was 20% on some days and as much as 40% on others...but now, the 35-40% days are becoming more frequent and the down days aren't as horrible as before.

    i rarely exert myself but when i do, the recovery time isn't as long.

    the improvements are mostly in cognition. the fatigue actually feels worse at times, but it's a different fatigue than before.

    in short, i feel that the improvement is becoming less tenuous, less delicate.

    thanks for reading:)

    ps....have had CFS almost 18 years, after mono.
    [This Message was Edited on 03/17/2009]
  2. Smurfette17

    Smurfette17 New Member

    I am so happy to hear that, Sue!!!

    Since you said once that your EBV wasn't too high, do you think it has really made a difference to be both on Valtrex AND Valcyte? I ask because I'm on Famvir and Valcyte (only one month on BOTH), but my EBV has been negative for about 4 months. I was going to ask him to take me off the Famvir bc I think it's not necessary-- what do you think? I just feel like I'm on so many drugs.

    Also, I'm curious as to how you are measuting your daily improvement as far as 20%, 40%, etc.?
  3. ladybugmandy

    ladybugmandy Member

    hi smurf! lol a lot of people ask how i am measuring...i am just going by how i "open" my mind feels really.

    for a while, both dr. lerner and i thought valtrex alone might be enough for me since my HHV6 was so low (the EBV is low too for that matter)...but when i stopped taking the valcyte for 2 months, i became deathly ill.

    there was a time i thought all i needed was the valcyte, but that turned out not to be true, either.

    hope you are doing better:)

  4. heapsreal

    heapsreal New Member

    good to hear you getting better, its the waiting to get better that can be painful too.

    Is there a time when dr l says you can stop av's or is it something he thinks u take for rest of your life. Im coming up to 6 months on famvir and in consult with my doc am thinking of lowering my dose or maybe stopping and keeping some on hand if i get sick again.

    My idea on av's is that they stop viruses from replicating not neccessarily kill them, so when stopping av's, viruses start to replicate, or is the viral load now low enough for your on immune system to handle it??
  5. ladybugmandy

    ladybugmandy Member

    heap....dr. lerner doesn't talk about this on his own and i haven't asked him, but i am pretty sure i will have to take the antivirals for the rest of my life.

    this link says 65% of people have to stay on the same valtrex dose to maintain improvements and 20% can lessen the dose. it is unclear whether the same applies to valcyte but i suspect it does.

    the idea of taking valcyte forever scares me, but i will do if i have to.

  6. spacee

    spacee Member

    Thanks for posting your results.

    A few days ago you asked me which AV's I had tried. I forgot that I have also tried valtrex with no reaction. It is just amazing cause my titers are so high (hhv6 worst and EVb not could). The labs came back with those + and - 's and my doc doesn't understand that "new way of reporting". I just found out we have a new Infectious Disease doc in the area. She is not too long out of school. I think I need to see her to at least get an interpretation.

    BTW. My friend with the Dr. Bell's MS info is having sinus headaches and she can't email when she has those...just to let you know that I haven't forgotten.

    Sue, I didn't realize that you had CFS for 18 years. Could you tell me how much the valcyte costs per month, if you know. And does your insurance cover it? I know the firm my hubby works for, their insurance premiums are almost too much for the lower paid staff and some of them have spouses who are about to lose their jobs. Hate to cause the insurance to go up higher. It is a group of 30 people.

    [This Message was Edited on 03/18/2009]
  7. ladybugmandy

    ladybugmandy Member

    spacee..thanks for posting:)

    i'm glad you have a new infectious disease doc in the area and it's good that she is new. i find newer ones to be much more open minded.

    valcyte is very expensive, $35 a pill. my insurance covers it so far so i am very very lucky.

    if you are in the united states, roche will give you valcyte free if you qualify. others on this board may be able to give you more information about their patient assistance program.

  8. spacee

    spacee Member

    I doubt that I would qualify. We look too good on paper. No ones factors in three sons in graduate school with no jobs on the horizon.

    Tough decisions.

    [This Message was Edited on 03/18/2009]
  9. 28years

    28years New Member

    I'm so glad to hear that you continue to improve!!!!!!
  10. ladybugmandy

    ladybugmandy Member

    28years...thank you:) you know...its ironic..i had major depression before i became ill. the brain fog muted all my emotions. now that the fog is improving, all my old psych issues are flooding back lol....anything is better than the brain fog, though

    spacee..there might be one other way. valgancyclovir (valcyte) is being manufactured by Cipla in india, despite the fact that this is a patent violation. there is ongoing litigation there. with a bit of scheming, you should be able to obtain a large supply from there, cheaply (someone may have to travel there, i don't know). something to think about if you are desperate....

  11. m1she11e

    m1she11e New Member

    Hi Sue,

    I have been following along with your posts and know you have certainly had your ups and downs following your anti-viral protocol. I am just so happy to hear you are seeing some steady improvements!

    I too have high titers of HHV6. I am starting with Famvir (Dr. Dantini prefers it and insists it is effective against HHV6 despite the research). I wil give it some time and switch to the dreaded Valcyte if needed. Your story truly is an inspiration!

    Thank you!!!
  12. spacee

    spacee Member

    Gave me a chuckle about someone might have to travel to India. My three sons are globe trotters, their babies have passports! Someone would step right up, I am sure. Well, no, they would say that their employment future would be at risk by doing something potentially illegal.

    Actually we have so many people from India living here, I could probably easily get someone to get it on their visit back.

    I know you have been ill 18 years. May I ask how old you are? I am 59 and I am really feeling the ooph to spend much effort to get better leaving me. This is new since I went to the Ft. Lauderdale conf a couple of years ago.

    It is like, is it worth spending 1.5 years or so in valcyte hell to get back to this life I have which is nothing but exercising so I won't become bedbound. And I don't think it is possible for me to look any healthier...which adds to the angst of it all. Not sure it is.

    Just kinda weighing my options...

    Thanks for you info and input, it is greatly appreciated!

  13. ladybugmandy

    ladybugmandy Member

    spacee....i can understand not wanting to go through it all. for me, my brain fog was unbearable. i had no quality of life so there wasn't an option. in fact, i told my first doctor, dr. galland, that i would be willing to take anything - including toxic drugs that might shorten my lifespan - to have a few better years.

    you are right.....i don't know how it works, bringing a lot of medicine back from overseas. if you have a prescription from india, i am not sure that it's illegal but one would have to investigate. i am pretty sure anything can be done in india if you offer money - at least that's how it seemed when i was last there, which was 25 years ago.

    i wouldn't say taking valcyte was that bad. i did get worse on and off for a few months and remember curling up in bed, crying and praying a lot. well ok maybe it was bad LMAO...

    michelle..thanks for your kind words. they really mean a lot:)

  14. ladybugmandy

    ladybugmandy Member

    spacee...i forgot to mention, i am 38.

    paula....i would say that you will feel worse for a while but knowing that you will eventually improve will make it possible to go through. i would go through it all again if i had to, to get here.

    you may be doing less than you are able to do now on most days, but it is well worth it in the end.

    i don't think i would wait if it were me, but i have never been a parent. if you have a supportive husband, i would go for it!
  15. spacee

    spacee Member

    Gee, Sue, you have been sick a very long time from such a young age. I got sick at age 36. I feel bad for you. Sounds like you had at least traveled before it hit.

    Hmm. can't remember your name (parent waiting for daughter to go to college). I have found with kids, you are always waiting for something (of course going to college is huge and worth the wait).

    Well, it is something to think about. It seems like a better idea when I have enough Vit.R in me (ritalin). Have looked around some sites trying to find out about India's meds but no luck. Might have to go to an HIV site.

    Thanks friends,

  16. ladybugmandy

    ladybugmandy Member

    just google "roche india litigation valganciclovir" !
  17. spacee

    spacee Member

    I have been able to find the litigation part. But not how to buy it.

    So, since you lived there when you were 13, you think a person can fly to India, say New Delhi, check into a hotel (for rest). Then find a cab driver and tell him "I want to buy some valganciclovir, take me to a place". And he will know?

    I have lived in the Orient that had places where you could buy pretty much anything you wanted. This was 40 years ago. Are you saying that is a possibility?

    I have thought of a friend who went on vacation to India several years ago. I wonder if he would like a return vacation?

    Life can have the oddest moments at times. (I do have the t-cell count of a person with AIDS and was studied in the HIV Clinic at the NIH. I do not have HIV though..some CFSers have low t-cell counts).

  18. spacee

    spacee Member

    1. Just go to a minute market and ask the owner if he has any relatives/friends back in India.


    2. Go to an Indian Doctor and ask the same question. We a probably 20 to choose from here.

    Fab idea. Should have thought of that sooner...

  19. spacee

    spacee Member

    1. Just go to a minute market and ask the owner if he has any relatives/friends back in India.


    2. Go to an Indian Doctor and ask the same question. We a probably 20 to choose from here.

    Fab idea. Should have thought of that sooner...