my first day OFF VALCYTE

Discussion in 'Fibromyalgia Main Forum' started by sascha, Jun 7, 2008.

  1. sascha

    sascha Member

    I am so happy. here's what happened.

    i saw Dr. Montoya yesterday and got results of my latest virus blood tests.
    >>> my HHV6 has gone down from over 10,000 to just over 1,000.

    >>> my HSV-1, which was very high, went way down. but somehow on my way home i lost the previous blood test results, so can't remember actual number.

    EBV test was, as has been the case, negative.

    Dr. Montoya was enthusiastic about these results, and said i could stop the valcyte right now- that finishing out the month wouldn't make any difference.

    in a month, i'll be starting valtrex- i have the prescription.

    Dr. Montoya seemed to think that considering signs and symptoms (i did get that return of cognitive function during the valcyte) that i have good reason to believe i will get good results (she said with great caution, but with a return of some optimism). who knows how long it will take to know for sure.

    i've been suffering acute gastric distress for three weeks, so maybe it will be hard to assess the coming out from under the valcyte that i've been looking forward to for so long!

    Dr. Montoya says valcyte leaves the system after 48 hours- YIPPEE!! i think it may take a while past that for me to come to. i have gone through many and continuous tough reactions since going on the valcyte January 1st.

    i asked him if older people have a harder time both on the valcyte and coming back from its effects once it's stopped; and he said not necessarily. i'm 66- he knew of a person quite a bit older who started getting better while on the valcyte, and didn't have long or difficult post-valcyte recovery time.

    So- all you warriors - hang in there! keep the faith and all like that there. a new day is/could be dawning!!

    very best to all- a happier Sascha

  2. Timaca

    Timaca New Member

    Thanks for your update. I'm glad to hear that you've seen improvements and that your labs correspond to that!

    May you continue to improve.

  3. ladybugmandy

    ladybugmandy Member

    excellent! congratulations!

    may i ask what valtrex dose montoya is using?

    thank you
  4. stschn

    stschn New Member

    I'm happy to hear that Dr. M. says he doesn't think that advanced age is a factor as I am 70. However I have been off Valcyte for almost 4 months other than the wonderful clarity of cognitive function I have seen no improvement. In fact I feel worse than before the drug BUT I did the Valcyte because I was once again feeling my body go down hill so it's possible that I would be in this state without the Valcyte and I'd still be foggy brained. I have had many relapses over the last 20 years with this DD. I had my lab work done in February because I wanted to have it on hand when I saw him in March then my appointment was reset to April. The quest lab had not sent the work to Focus as they were told to do so the results didn't mean squat and I don't know where my titers are now. I see Dr. M on the 11 and will know then. I am getting the feeling that the people who have not had this stuff as long and don't have as many virus -I have HHV6 CMV EBV HHV1- have a better shot for more recovery.
    [This Message was Edited on 06/07/2008]
    [This Message was Edited on 06/14/2008]
  5. sascha

    sascha Member

    timaca- i'm not at feeling better stage yet physically. just feeling much happier to be off the valcyte. i had a hard time through it. it is vastly encouraging that my titers are down. i hope it correlates with my feeling better SOON. i seem to feel a lightening of the toxic feel of the valcyte. tomorrow morning (Sunday) will make the 48 hours off valcyte.

    sue- hard to read Dr. Montoya's prescription. seems to say 1-0gm a day for 30 days (does that make any sense?). then 6 refills. i sure wonder now how valtrex is going to feel. i certainly hope it's a much kinder, gentler anti-viral.

    the valcyte stops replication of viruses; then when level gets down to certain point, the body starts combating them. i asked Dr. M about this. then the valtrex helps keep the show going.

    stschn- post your results when you know after your app't on the 11th. and compare with earlier ones, if you can. sorry such slow progress. maybe it is just s-l-o-w. see what Dr. Montoya advises.

    thanks you all for writing!!! best to you, Sascha
  6. deserella

    deserella Member

    I was understanding that valtrex was for EBV. It must help with HHV-6 too???
  7. ladybugmandy

    ladybugmandy Member

    apparently. valtrex will not work for an established hhv6 infection but will keep it in check once its down to a certain point..

  8. ladybugmandy

    ladybugmandy Member

    valcyte didnt help me one bit...and i tried it for quite a while.

    i have been on valtrex for less than 1 1/2 month and already feel 5-8% better.

    i guess EBV was my main problem all along...

    i would like to encourage more people to try valtrex after valcyte...maybe it will really help.

    the dose i am on is 1 g 4 times a day.

  9. sascha

    sascha Member

    i meant to ask Dr. Montoya that question, but he wrote me a prescription, and knows i don't have any EBV, so i guess that's the answer to my question right there.

    i'm not yet enjoying resurgence of health and well-being. in fact, i'm pretty sick today with a temp. darn it- well, patience....

    good luck you all~~Sascha
  10. ladybugmandy

    ladybugmandy Member

    thats what i am so afraid of..the progress stopping....but as montoya said, it is "excrutiatingly slow".

    i am tempted to ask dr. lerner if i can raise the dose even further, but i am sure he will say no.

    i find myself looking to the future...i search feverishly for online courses i might sites...psychotherapy....i have missed out on so much these last 15 was as if i was in prison.

    but then i remember that i am still very sick and there is no guarantee that i will recover.

    ugh...i hope i do

  11. ladude

    ladude New Member

    Hi Sascha

    is there a reason you were on valcyte first and will go on valtrex next?

    one of my docs wants me to valtrex. I am waiting to ask her what can I expect in the way of side effects.

    glad to hear these meds helped!

  12. ladybugmandy

    ladybugmandy Member

    hello. thought i'd let you know what my side effects are on valtrex...insomnia (for which i take benzos), restless legs (mild) and a little nausea sometimes. i also notice i am unable to sleep before 4 am...and i sleep most of the day.

    i do not have any fevers as i did on the valcyte.

    good luck!
  13. sascha

    sascha Member

    valcyte is more powerful than valtrex, so is used first to do the main stomping of the viruses. Dr. Montoya explained using his hands to show high initial level of viruses- then how valcyte brings it down to a certain level (he lowered his hand) to point where valtrex can then be effective.

    i thought the valtrex was for EBV, but i haven't tested positive for that virus in 3 separate blood tests spaced out over a year. since Dr. M prescribed the valtrex for me to now keep my lowered titers from rising- and i hope take them down more- certainly establishes that the valtrex IS for HHV6 and HSV1. Sascha
  14. sascha

    sascha Member

    so interesting to read about your side-effects on the valtrex. i almost never have insomnia. i'm a sleeping machine- it gets scary.

    it has been on my mind- what the valtrex side-effects are going to be like. i found the valcyte so hard to bear. it got really hard during the last three weeks because i suddenly got into a severe IBS flare-up, which is so miserable. i was pathetically grateful to Dr. M for saying i could stop the valcyte 3 weeks early.

    and you mentioned Dr. Montoya saying recovery is "excruciatingly slow" - that helped me, too, to see that. i've been off the valcyte just over a week. three huge horrible symptoms cleared up pretty much, BUT i am weak, wasted, wan, exhausted, achy- that stuff goes on.

    i was having my hair cut (for first time in months and months) and observed in mirror how pale and wasted i look. yikes-

    this takes incredible patience and fortitude. qualities that i guess need developing in me.

    thanks- Sasche
  15. sascha

    sascha Member

    good words of wisdom that you wrote about body knowing maybe before it becomes evident to our minds, that healing may well be taking place. this is something i've seemed to experience- that there can be a deep body knowing that seems based on nothing, then it turns out to be the actual case.

    i'm always trying to go to deep level to check on what i should do in any particular instance.

    i think you were writing to Sue about this- how she may well sense that good changes are coming, and i sure hope so.

    WE ALL DESERVE A GREAT CLEARING IN THE HEALTH DEPARTMENT so we can get back into life and have a good time!!!

    best, Sascha
  16. stschn

    stschn New Member

    Doctor Montoya has me on 500 mg and the prescription is for a year. I have had nothing that I feel was an effect of the Valtrex but with all that goes on in my body I'm not 100% sure. But what ever it's nothing like the hell of Valcyte. I felt like I aged 6 years in that 6 months and I looked like it but the good news is that as I feel better I look better. I talked to Dr.M. about immunesupport and it was his feeling that my immune system was already going full out and I should relax and let it do it's job which has been made easier by the valcyte and valtrex. I asked about oxygenated water and again he said let my body do the work and not to try anything that has not been tested and shown to work. I got the message.
  17. sascha

    sascha Member

    yes, empty2void- i'm trying to be very kind to myself i sometimes take days to return a phone call. i don't pick up the phone because talking on the phone has been hard for me. i felt guilty about this, but then decided it's really in my best interests to protect myself however i can. so following my instincts is what i try to do- i find that when i don't i wish i had.

    stschn- i guess i mentioned i went to have my hair cut and i looked so AWFUL- so pinched, old, skinny, wasted, pale, unwell; yikes. it pleased me to hear that as you are feeling a bit better you notice you are looking better! i hope i observe this happening.

    in general i don't think AMA types credit supplements. it makes sense- it's nothing they've studied in med school. they go by what is demonstrably so; what can be proved/what has been proven. but i still might like to try out some remedies for myself- nothing drastic- tried and true supplements. Good to dialogue with you!!! sascha
  18. ladybugmandy

    ladybugmandy Member

    hi all. thanks for the replies and good wishes and i certainly wish the same for you all.

    kelly...i keep thinking about what you said...that when you feel better, then there is no reason not to hope that you can get back there one day...that thought has been helping me.

    i have been catching little glimpses of improvement but the day after i often i remain between 5 and 8%.

    i have been resting almost obsessively now. my mom is 73 and i don't even accompany her to her doctor's appointments which are far away by public transit...i feel very guilty!

    this is indeed going to be excrutiatingly slow and difficult. i wonder what it was about montoya's original patients that made them recover so quickly?

    i may get my RNase L tested soon to at least prove to myself that i am on the right track...? if it has gone down considerably (to at least less than 1000) i might feel better...

    i see dr. lerner this wednesday. i have 3 questions to ask but i have to choose only 1 (whether i can increase the valtrex, what my cancer/lupus/MS risks are, and about creating resistant virus with long-term antiviral use).

    i can't believe i took my sharp mind for granted...i never dreamed this illness was possible.


    [This Message was Edited on 06/16/2008]
    [This Message was Edited on 06/16/2008]
  19. ladybugmandy

    ladybugmandy Member

    thank you:)

    yes..not pushing is very, very hard! i pretty much lay around and the only boost i get is from sugar..and its hard to stay away from it! lol maybe i can parlay this illness into a career in gut barging LMAO

    wow..i haven't heard of that neurotoxin. i will look it up.

    you know..every cancer i read about seems to be linked to EBV...gastic..breast..lymphoma of course...and they say that even if EBV isn't the cause, it makes it spread faster.

    does this mean that we are walking time bombs because we already know our immune systems can't effectively deal with the virus?

    i still beat myself up everyday about the night i got the EBV, how stupid i was, and how i could have easily avoided it. i will clearly need psychiatric help to forgive myself. i have started to look for shrinks.

    thanks for the help and support kelly, i really appreciate it.


  20. stschn

    stschn New Member

    it does concern me that Doctors don't know about supplements as I'm sure most all of us take them and we do hear that there is a concern that it might be a problem with them and the meds we are on. When I first went to my last doctor (who is no longer my doctor) they told me I had to bring in all my meds and to leave the supplements at home. I take a lot of them-in this case them being meds and supplements. I just contacted the Pacific Fatique Lab and they emailed the out line for activity management for CFS they too say that the majority of CFS people showed that oxygen consumption is at 36%-76% less than the NORMAL population. The results were published in the May 20003 issue of Medicine and Science in Sports and Exercise. So I'm thinking of running the oxygenated water question by them.

    And just a side note about all the other worries out there. I'm 70 years old and have had this DD for 20 plus years. To date this is the only thing I am dealing with and truthfully its more than enough. There is a history of cancer in my family grandmother,mother,father,aunt oh yes and my first husband. I however do not smoke, am careful about what I eat and try my damndest to keep my weight down as much as possible in the situation. I also have all the required test for early detection. I do believe that worry is praying for the worse to happen.
    [This Message was Edited on 06/16/2008]