1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
The Pathway to Prevention (P2P) for ME/CFS: A Dangerous Process
Gabby Klein gives an overview of the P2P process, shedding light on the pitfalls with advice as to what we can do in protest ...
Discuss the article on the Forums.

Vaclyte best protocol ?!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Omar88, Feb 14, 2013.

  1. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    My doctor wants me to start Valcyte as my test numbers are getting more high every time but i would like to know best dosage and protocols please !!

    Thnx
  2. Sherezade

    Sherezade Guest

    Messages:
    97
    Likes:
    46
    What virus did you tested positive for?

    I'm negative for Cmv but positive for Ebv igg (antibodies).

    How did you manage to get your doctor on board? My infectologist is still treating me like a psychiatric patient, and she won't let me even to mention antivirals. Sigh.
  3. vli

    vli

    Messages:
    1,741
    Likes:
    1,806
    CA
    i don't know where u are, but if i were you the first thing i'd do is: dump the infectologist.

    OP, PLEASE look at the various threads started by undcvr, heapsreal, SOC etc on using valcyte.
  4. Sherezade

    Sherezade Guest

    Messages:
    97
    Likes:
    46
    I know! I have to change doctors, but it's really frustrating because the ones that i have seen are the very best specialists in my country!

    Here's a list of the specialist (24 in one year)

    Three infectologists
    Three psychiatrists
    One psycologist
    Two neurologists
    One urologist
    Two gynecologist
    Two cardiologists
    One acupuntologist
    One periodontologist
    One otorrinologist
    One gastroentelogist
    Two nutrition experts
    One oftalmologist
    One neurooftamolologist
    One allergologist
    One hematologist

    I've dumped all of them, except for one psichiatrist that i'm seeing weekly. I'm running out of options here. Anyway, as many of you have adviced me i'll have to get help abroad. Even if is more expensive, but i'm sick and tired of being treated like a mental patient.
    golden likes this.
  5. vli

    vli

    Messages:
    1,741
    Likes:
    1,806
    CA
    where are u? please write it on ur profile.
  6. vamah

    vamah Senior Member

    Messages:
    574
    Likes:
    643
    Washington , DC area
    The Montoya Valcyte protocol is 900 mg twice a day for 3 weeks then decrease to 900 mg once a day and stay on it for at least 6 mos. This is the protocol I am starting in a few weeks for HHV6.
    Omar88 likes this.
  7. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    My doctor wants me to start 900 mg twice daily for three weeks and then continue a 900 mg dose for 9 weeks !

    the total will be 3 months as he say he didnt prescribe this before and he is afraid to go for six months !!!

    but i think if my symptoms start to get bitter he will let me continue my 6 months and i think 3 months will show something ,,,
  8. vamah

    vamah Senior Member

    Messages:
    574
    Likes:
    643
    Washington , DC area
    6 mos is recomended in order to let your immune system recover enough that it can keep the virus in check without the medication. It can take 3 mos just to start feeling better. I think that if you don't have any adverse reaction to the drug in the first 3 mos, then you are not going to, so I hope your doctor lets you stay on. I have heard people say that it's even better to stay on it for a year or more in order to minimize the risk of relapse.
  9. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    I believe this data is out of date and Montoya no longer starts high and then decreases. Too many people were having bad side effects from the high initial dose.

    This is Dr Lerner's protocol.
    See http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf for more complete information. Look under Antiviral Treatment for HCMV and HHV6
  10. vamah

    vamah Senior Member

    Messages:
    574
    Likes:
    643
    Washington , DC area
    SOC: Thanks for your post. I talked to my specialist, who felt that both the Montoya and Lerner protocols had their points. I have still decided to start with the higher dose, since I usually tolerate medication fairly well. If I have problems, I may switch to the lower dose protocol.
    SOC and Kati like this.
  11. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    I just came back from my infection disease doctor apointment and he was like i dont mind even if we go with your treatment trail for a year and he asked my help with the dosing if i have any ideas !

    He wants me to start on 900 mg twice daily for 3 weeks and go for 900 mg once to continue my six month and a 450 mg for the rest of th year ,,,

    He never treated this illness and he is trying his best so am so thankful for that !

    Now i wanna ask abou montaya new protcol ? How much the dose he start with and how many times a day should we take it ?

    Please guys help with this because he dont even knw th 900 mg should be taken one or divide it between the morning and night after i finish my first 3 weeks !!
  12. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    Take this document to your infectious disease doc. Dr Lerner has been treating ME/CFS patients with antivirals longer than anyone else. He has an amazing amount of knowledge and experience with them.
    http://www.treatmentcenterforcfs.com/documents/MECFSTreatmentResourceGuideforPractitioners.pdf
    Look under Antiviral Treatment for HCMV and HHV6

    Valcyte can cause potentially fatal side effects which are reversible if caught in time. It is critical that you have routine (every 4-6 weeks) blood tests to check for neutropenia and liver failure.
  13. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    You might want to consider what would happen if the initial high dose causes the serious side effects -- they're not just uncomfortable, they're potentially fatal. You would probably not be allowed to (or want to) take Valcyte at the lower dose if you start developing neutropenia or liver failure because of the high initial dose.

    My family has had good luck with Valcyte treatment, so I'm all in favor of it's use for ME/CFS. I do believe, however, that we need to be cautious.

    Good luck with whatever path you choose. Keep us posted on how it goes for you.
  14. Rooney

    Rooney

    Messages:
    75
    Likes:
    19
    SE USA
    Dr. Peterson started me at 450mg twice a day. It was too much to handle after one month. I now split a 450 pill for once a day dosing. On PR earlier this year, I thought, it was stated Montoya now starts with 1/2 pill for one month, one whole pill one month, etc. as a way to ease into this tough drug.

    1/2 is a little hard but OK. We do learn to be patient with this disease, no?
  15. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    Last update with my doctor he wants me to be on 900 mg daily for six months ! and to go down to 450 mg after that up to year ,,,

    Did any one tried this protocol ? does any one see that it could be wrong ?!
  16. vamah

    vamah Senior Member

    Messages:
    574
    Likes:
    643
    Washington , DC area
    SOC: Thanks, I do appreciate your concern. I started on Valcyte yesterday and am going to go with the higher dose to start. I have thought about it a lot and discussed it with a friend who has done that protocol and I think it's the right thing for me. I will be getting blood tests to monitor for serious side effects and I know my friend will be keeping a close eye on me as I start the protocol :) . I am actually feeling fairly anxious about starting valcyte. Worried about massive herx (my HHV-6 titers are through the roof), about side effects and mostly worried that valcyte won't help me at all. I'm glad to hear of other people who have had success with this. Trying to keep a positive attitude.
  17. vamah

    vamah Senior Member

    Messages:
    574
    Likes:
    643
    Washington , DC area
    Omar88: Just wondering what viruses you test positive for and how high your levels are. Could make a difference in what protocol is right for you. I don't see any problems with the protocol you mentioned, but it does mean being on the medication for a longer period of time -- maybe indefinately. You may want to weigh this against a higher dose for a shorter period.
  18. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    I don't think you have to worry about herxing. Antivirals don't kill viruses, they just stop them from replicating, so you won't have a sudden massive die-off for your body to deal with. The idea is that that antiviral stops replication and then your immune system and normal death will kill off the existing infected cells. It's not a fast process, especially if your immune system isn't particularly strong, as is common in ME/CFS.

    The bad reactions with Valcyte look more like IRIS (Immune Reconstitution Inflammatory Syndrome) http://en.wikipedia.org/wiki/Immune_reconstitution_inflammatory_syndrome and don't usually happen immediately. Plenty of people never have that, either. I did, but my uncle and daughter did not.

    There are also normal bodily reactions to a toxin (the med itself) and there's really no way to know, as far as I've seen, whether you're going to have a "normal" bad reaction to Valcyte. That's true with most meds; it's a risk we take.

    If you're lucky, you'll be like my daughter and uncle, who had no problems whatsoever with Valcyte. :)

    Good luck with your Valcyte treatment! Let us know how it goes for you.
  19. SOC

    SOC Moderator and Senior Member

    Messages:
    5,283
    Likes:
    6,254
    USA
    I don't think a higher dose for shorter time works for antivirals the way it does for antibacterials. The longer term treatment with antivirals is meant to keep replication of the virus suppressed over time while your immune system and normal cell death kill off the virus-infected cells.

    As I understand it, the higher doses are good for getting some med into brain tissue which is likely invaded in chronic HHV6. Not much Valcyte gets through the blood-brain barrier, so a higher dose means that at least a small amount gets in to help the brain. The trade-off is that the higher dose in the rest of the body can lead to more toxicity.

    For us, Dr Lerner did 900 morning/450 night dosing for a year or so, then switched to 1350 mg in one morning dose to get the higher amount in the bloodstream to get at the tougher places. It's my understanding that he feels this is the pattern that most people tolerate best. Everyone is different, of course. :)
  20. Omar88

    Omar88 Senior Member

    Messages:
    335
    Likes:
    160
    In my forth months of my illness i was tested for EBV,CMV and i had high titers that went down while i started to feel better !

    3-4 months ago i felt worse and i my symptoms were bad again and my numbers went up after they were in the normal range !!

    my CMV IgG was when i felt good then it jumped to 100 when i couldnt leave my bed and it went up to 120 then 160 and my doctor says if the antibodies get 4 times higher than your last test this means reactivation the infection but he still dont why its reactivated and why my EBV EA are always positive ,,,

    They doesnt have HHV6 test because they dont usually do it and as he says every one have it and it doesnt cause symptoms !! and my case is rare that its the first time he see a patient like me ,,,

    The Valcyte is prescribed for my CMV infection and he called me again today asking me to start with the high dose 900 mg twice daily for 3 weeks and continue with 900 mg for the rest of the six months and go down with 450 for another six months if the treatment worked after he asked another doctor out side this country who used this protocol before

See more popular forum discussions.

Share This Page