Valcyte pioneer pack

Discussion in 'Fibromyalgia Main Forum' started by stschn, Nov 9, 2008.

  1. stschn

    stschn New Member

    What happen to it? I've said before that what is upsetting to me is the number of people that I know of that have gotten improvement and then just cut the MB and the rest of us still dealing with this DD out of their lives. If I'm blessed enough to have that happen rest assured that I'll let you know. I did Valcyte from August 07 to February 08 with Dr. Montoya. And yes it was a very hard ride BUT I did get cognitive improvement. I can balance out my check book and I even transfered money from my IRA without my husband having to walk me through it. I would not have been able to do either before Valcyte. However my energy is still very low. At my April appointment with Dr. M. (I cannot always get an appointment when I want it as he's a pretty busy fellow) he put me on Valtrex 500mg. I saw him again in June when he referred by to the Pacific Fatique Lab program (they only take people that are refered by 4 of the CFS specialist) I am currently following a program outlined with them. I saw Dr. M. again last Wed. The good news is that all of my viral titers are now low. I forgot to ask for a copy of my lab work but he did seem very happy that my HHV6 which was over 1500 in 07 is now 30. Sounds great but I still have no energy altho in the last 4 months I've only had one day that was so bad I had to go back to bed and that I really appreciated. I don't do much other than read (oh yes I can read and remember what I read) and watch T.V. Due to the program set up at PFL I now use a power chair, shower chair, stair chair so Im not wearing myself out just standing and walking. I had struggled with the possibility that he would want me to go back on Valcye and I had made up my mind that I would but in view of the low HHV6, CMV, HS1 and I forgot to ask about the EBV also being low but what he did was triple my dose of Valtrex a drug I've had no side effects from. Doctor said he has seen people with good improvement overall, people with cognitive improvement and the energy finally comming along much more slowly. So he thinks there is still hope for me as do I. Either way I am so happy about what I can now do that I haven't been able to do for so long.
  2. redhummingbird

    redhummingbird New Member

    Thank you for posting your progress and experience with Valcyte. The information is really important.

    I really hope other's who have been on Valcyte will report their experience here in this thread as promised.

    That is good news about the decrease in your viral titers as well as an increase in your cognitive functioning.. Maybe with the Valtrex and more time your fatigue will decrease.

    Thanks again for posting and remembering.
  3. Timaca

    Timaca New Member

    Do you haven any other pathogens that have reactivated? Like chlamydia pnumonia (Cpn)?

    So you will be on 1500 mg valtrex daily, instead of 500? Why did he up the dose if all your antiviral titers are low? To see if it would help with your energy?

    I just had lots of blood drawn....we'll see what my viral titers are. I'm currently on 800 mg acyclovir (an antiviral drug) and 200 my doxy for viruses and Cpn.

    When I was taken off valcyte (and yes, I did see improvements but did not get well); my HHV-6 and EBV antibody titers went up. I was put on acyclovir. It will be interesting to see where they are now.

    Best, Timaca
  4. ladybugmandy

    ladybugmandy Member

    i wonder if anyone has asked dr. montoya why he is not using dr. lerner's protocol of valcyte with valtrex...and why he is not using lerner's valtrex dosing.

    i would imagine safety is a concern but dr. lerner has been doing this for so long and claims his patients have not had any negative reactions.

  5. deserella

    deserella Member

    I really hope you see some improvement. This is such a long process this whole antiviral thing! I've been off valcyte since June. I've had a handful of really good weeks since then, but not consistant yet. Don't get me wrong, I am so thankful for those good days. I teach an hour of piano lessons 4 days a week. I don't have to get all fixed up to teach kis, they don't care and I am no on my feet. It's a great job.

    I'm taking an online class:biology and I have a year to complete. Doing it through BYU. My cognitive has improved. I think I still have more improvement to go. I get pretty fatigued from the mental exertion of studying.

    I'm doing better compared to how down and out I was on valcyte, but pre-valcyte I'm about the same energy wise, maybe a bit more fragile because the valcyte did a number on me!

    My mom and I have been wondering if I should go on valtrex. I have not met with Dr. Bateman since July, just the Nurse Practitioner who doesn't really know as much about this anti viral stuff. Isn't Montoya's theory behind valtrex is that it keeps the virus from replicating? I'm getting my titers checked soon, but I have a different lab I use than the one Montoya does.

    Good luck everyone with keeping up the fight!
  6. stschn

    stschn New Member

    Dr. Montoya has found no other pathogens thankfully. I didn't think to ask why he was upping my valtrex-I think I was just so relived when he didn't say I should go back on Valcyte that it didn't come to mind. That and the fact that I don't know if when he was talking about all my virus being low he was also talking about EBV as he is so interested in the HHV6 connection. I'll call Stanford today and ask for a copy of my last lab work. I make a list of questions every visit and then think of new ones the minute I'm out the door. You question about why the increase in valtrex is on my Feb09 list.

    Ladybug I wouldn't dream of asking Dr. Montoya why he doesn't follow Dr. Learner any more than I'd ask Rembrandt why he doesn't paint like Monet. I'm sure there is a lot of ego involved here and I would feel like it was an insult to a man I highly respect and who's judgement I trust.

    Kathy I agree with all your points and believe me at age 71 and after 21 years of this DD I'm still fighting if not for me than for my downline. I'm concerned that due to my genes I may pass the possiblity of this illness on.

    Deserella have you thought about a powerchair? When PFL suggested that I wear a heart rate monitor and log my heart rate for two weeks it really drove home how much my body was over working even when I thought I wasn't doing anything. Walk to the kitchen HR 115, climb the stairs to the bedroom 130, take a shower and wash my hair 160. I was told it should never go over 100. God only knows how I hated to make the decision but the bottom line is my life is better because of it. I have a stair chair, a shower chair and a travel wheel chair as well.
  7. stschn

    stschn New Member

    Hopefully more imput on Valcyte. It's also important to remember that with all the research that was done during the Stanford trial we will learn alot more about this illness. With the reputations of Dr. Montoya and the Stanford Medical group it will be "one giant step for mankind (or womankind).
  8. stschn

    stschn New Member

    I am so sorry that the second round seems as bad as the first. That was a big question on my mind when I was thinking about what to do if I was told to go on it again. I'm glad that you have someone to cheer you on the journey who really knows what it is like we can all use that. Joyce
  9. stschn

    stschn New Member

    It's more than o.k. What a terrible fix for you and there are many of us with financial problems is it possible that you would qualify for help with the drug from Roche? I don't know where you live but the cost of seeing both Dr. Lerner and Dr. Montoya at different sides of the country must have taken a toll in it's self. My prayers are with you, Joyce [This Message was Edited on 11/13/2008]
  10. stschn

    stschn New Member

    In the hope that kelly will find some answers!
  11. winsomme

    winsomme New Member


    not suggesting that every day is the best for you. i really don't know too much about the experience of taking Valcyte....but if you want to be on every day and can afford it, i would just tell Dr Lerner that you felt like you were gaining more ground when you took it every day...and less so now that you have been taking it every other day.

    see what he says..

    what about emailing that thought to him? i've heard that he does do email exchanges...

    in the email simply ask if at your next appt you could consider going back to every day dosing because you felt like you were gaining more ground that way...

    just a thought.

  12. ladybugmandy

    ladybugmandy Member

    did you ask dr. lerner why he will not put you on the daily dose if your liver enzymes are fine? i do not understand.

    my HHV6 antibodies are only slightly elevated and he still would like me on a daily dose but my liver cannot handle it.

    did you ask him what he thinks about developing resistance?

    i have sometimes read that resistance is not usually seen with herpes viruses...but i have also read other opinions.

    please keep in mind that the valcyte instructions may assume that the patient has HIV or transplant. CFS is way off-label still.

    also, you may want to pose questions to dr. ablashi and/or dr. louis flammand in quebec, who is an HHV6 expert. he is pretty nice and is working on the HHV6 EA test.

  13. deliarose

    deliarose New Member

    what is "natural" hydrocortisone?

    And I'm sorry about your difficulties with dr. lerner...It seems he demands complete faith & I think that's a little premature at this point in our understanding of this disease.

  14. deliarose

    deliarose New Member

    Hi Kelly
    I am good for the most part. Slow but steady progress with the odd setback when I do something stupid and take way too much of sthg..
    I'm pretty much doing straight yasko including the testing. It's coming up on 2 years, which is typically when people see significant progress. I feel I am on the right course, but I'm still nowhere near as functional as I would like.
    But I don't suppose I will see great progress until the methylation cycle block is lifted & my latest Vitamin Diagnostics panel shows it is still blocked though not as bad as a year ago.
    Hey: what's your eBay handle? I tried contacting you that way, but couldn't find you listed.
  15. stschn

    stschn New Member

    If Whittemore is looking at a new virus HHV 8 the question is does it respond to Valcyte or Valtrex or does anyone know?
  16. ladybugmandy

    ladybugmandy Member

    hi all. i am looking for some advice about a big dilemma i have.

    dr. lerner took me off valcyte in mid-november due to slight liver enzyme elevation. he says he has to be very careful because he gives valcyte longer than anyone else and there have been documented cases of liver cancer from the drug.

    i did make some improvement on valcyte combined with valtrex but since going off valcyte, i have declined completely.

    i am in michigan now. my last holter showed a fast heart rate (SVT he says) so he put me on 12.5 mg atenolol twice a day. he made me do another holter and echo, and wants me to have a liver CT, pap smear, and mammogram (I have not had a pap or mammo in a long time).

    my problem is, i cannot afford to keep seeing him. the echo alone was $750 USD, it cost over $1000 for the 12-day hotel stay, not to mention his fees, food, transportation, etc.

    i can afford to come here only once a month but dr. lerner refuses to do anything over the phone and rarely allows me to fax him blood work from canada. he does not budge and often wants me to come to his office every 2 weeks or less.

    i do not know what to do. at this rate, my mother and i will be broke very shortly.

    but i am so nervous about leaving his practice. there are so few docs who know how to combine valtrex and valcyte. i have had CFS for 16 yrs. its going to take yrs of treatment.

    i just do not know what to do or who else to see.

    any suggestions would be appreciated.

    thank you
  17. winsomme

    winsomme New Member

    is Dr Levine still using Valcyte?

    i know she is more flexible about doing bloodwork at home and communicating via phone and email...

    and is very reasonable money-wise.
  18. ladybugmandy

    ladybugmandy Member

    wisomme...thank you for the suggestion but i despise dr. levine. i saw her once and her treatment of me made me want to commit suicide. but she is reasonably priced, i'll give her that lol

    kelly...thank you. i did contact K. Loomis, who said she didn't know of anyone combining the drugs and doing phone consults. she mentioned an MD she knew who had CFS and who did Lerner's protocol himself and improved. she was careful to point out that he was also found to have enterovirus and took interferon and some herbal drug.

    Loomis again tried to persuade me to check for enterovirus and dr. ablashi told me that a few times before too.

    my plan now is to see lerner on wed and see if he puts me back on valcyte. likely he will not since the liver CT is not done yet.

    i will then ask him to work around the fact that i can come to see him only once a month. i know he will say no.

    finally, i will ask him to prepare a treatment protocol for me and ask if i can see him in
    consultation if i need to (i am sure he will say no to the consultation idea too).

    then, i will go back to toronto, get the liver CT, and if it is normal, i will restart valcyte on my own. i will also get the pap smear and mammogram.

    then, i will try to convince a toronto doctor to order an upper endoscopy (this will be next to impossible). if i can manage it, i will have to somehow arrange for the slides to be sent to the enterovirus lab (another almost impossible feat in canada!).

    if i cannot do this, i will return to dr. leo galland in NYC and ask him to arrange for the test and tissue testing. this will run into the thousands but at least i will not be pouring all my money into dr. lerner and his research.

    since i will no longer be seeing dr. lerner, i will be free to try isoprinosine, avemar, and other immune enhancing medication.

    i am actually not as hopeful as i sound and quite overwhelmed and scared but maybe when i start valcyte again i will feel a little better and can think more clearly about what to do next.

    kelly..i hope you continue to do well. your story always gives me hope and i think of you often. your comments are always valued.


  19. ladybugmandy

    ladybugmandy Member

    i posted a long reply last night and it isnt here!