My Very own Valcyte thread

Discussion in 'Fibromyalgia Main Forum' started by acer2000, Jan 9, 2008.

  1. acer2000

    acer2000 New Member

    I figured instead of posting on other people's threads about my experience, I'd start my own. I don't have much to report at this point, since I have only been taking the drug for a week, but hopefully as time goes on I'll have more to say.

    My history as follows:

    I got sick in March 2006, following an operation I had. I was recovering fine for about 6 months after the surgery, and then all of the sudden it hit me. I have been sick about 1.75 years at this point. I am 26 years old and male, prior to this incident I had no health problems, tons of energy, and consider myself intelligent. I was working as a computer consultant for a fortune 500 company at the time I got sick and traveled extensively in the 2 years prior to falling ill. My symptoms are:

    Fatigue, Cognitive Dysfunction (poor memory, concentration, word finding problems, sometimes confusion, etc...), sensitivity to light, muscle twitches, and sometimes I get these tiny little bruises on my legs, low body temp, circles around eyes. Oh and about 2 months after getting sick, my thyroid went south - so now I'm on armour.

    Previously to the Valcyte, I have tried the following treatments with no success:

    Rest and Relaxation, Psychotherapy (as if.. ha), Various combinations of vitamins, cortef for "adrenal fatigue" as well as "Adaptogens" for the same, messing around with different thyroid treatments.

    I also tried EEG biofeedback, although not intentionally. My previous doctor referred me to "biofeedback" to try to help my sleep, and the practitioner i guess tried to treat me for ADD (because of my concentration problems) with EEG biofeedback and it went horribly wrong and overall made my cognitive symptoms worse. I am still trying to figure out what to do about it and am hoping the Valcyte clears the symptoms so I don't have to go back to the biofeedback. I am very upset about the Neurofeedback because I think it clouds the picture, and of course, I didn't have ADD prior to CFS - so the guy was just completely wrong and in my opinion negligent to treat me for it. I don't see the Dr. who suggested it, or the neurofeedback practitioner any longer.

    Dr. Lerner found a 1:640 titer to HHV6 and he says I'm negative for EBV and CMV on his tests. I also have high mycoplasma titers and I suspect that is also playing a role here. About a week ago I started taking Valcyte at 1350mg a day. He said within a few weeks I should be feeling "much worse", and then at around 6 months I should be feeling "back to the way I was before valcyte" and then between 6 months and a year I should have "no signs and symptoms of the CFS" - that is if it works for me. I got my fingers crossed.[This Message was Edited on 01/09/2008]
  2. Slayadragon

    Slayadragon New Member

    Glad to see you've started a thread, since it's much easier for me to keep track of people's progress that way. Good luck to you.
  3. deliarose

    deliarose New Member

    subjectively and on tests.

  4. sascha

    sascha Member

    good to know another person is at about the same point.

    i've had cfids for 8+ years. i'm 65. my symptoms have been all over the map. had to keep going to Urgent Care for a few years.

    i think symptoms cycle through phases over time. i made a list of symptoms just before starting valcyte: dizziness/sensation of head swimming; pain in muscles and joints; backache; svere fatigue exp. post-exertional malaise; haed/brain at times out of commission; weakness; need for long quiet rest times(hours & hours some times); no concentration for any decent reading (brain fog)(eyes don't seem to track properly); muscle atrophy; eyes dry, red, stinging; knees and hips painful (difficulty walking, getting in and out of my car); constant congestion; and i love this phrase >"excitatory neuro-toxicity" (can't stand much in the way of noise, lights, stimulation- i may bear up for a time, but inevitably it takes a toll and i crash).

    the valcyte is now affecting me in strange and mysterious ways. i'm very grateful and excited to be on it, but i am experiencing new symptoms (nerves seem shot- i can't tolerate much of any input; stomach distress now and then w/nausea; steel vise-like band around my head at times; depressed and anxious mood; more joint pain..)

    well, on it goes- i hope treatment works for you. and me!

    best, sascha
  5. pawprints

    pawprints New Member

    Thanks for reporting on your experiences. It really helps others who may want to try the Valcyte.

    I agree your age and short length of time being sick will be on your side.

    Good luck. Thanks for the thread.
  6. erica741

    erica741 New Member

    It is always great when we have more Valcyte experiences to share on this board. I am particulary interested in what Dr. Lerner has to say because I've been seeing Dr. Montoya.

    Many of us seeing Montoya or other doctors have been feeling discouraged because at the end of our 6 months, we feel no better or even worse than when we started Valctye. (I am a week away from 6 months and continue to crash). Lerner has had years of experience with Valcyte and other anti-virals, so it is uplifting to hear that he expects patients to be only at pre-Valctye levels after 6 months.

    I got sick around the same time as you. April-June 2006 was when I started getting repeated "flu-like" symptoms that caused me to miss a lot of work. I started Valcyte in July, which was about a year after I got really sick. I'm hoping that the fairly quick treatment will work in our favor.

    Please continue to keep us posted, even if you start to feel so bad that you can only write a few sentences or add on to someone else's thread.

    I wish you the best in your treatment and recovery.


  7. Lichu3

    Lichu3 New Member

    Thanks for posting! You have brought up interesting points in the past -- that must be the analyst in you coming out.
  8. acer2000

    acer2000 New Member

    With respect to the dose of Valcyte, he just told me to "take 2 in the morning and one at night", which really translates into "every 12 hours". I don't know if he will reduce the dose, but it does seem like he has a differing of opinion w/ Dr. Montoya on the dosing schedule. I asked him about this and why he didn't use 1800mg initially and he didn't really answer the question, so I guess I just have to hope experience is on his side and it turns out that the loading dose does't make a difference. If it turns out that it does, I am gonna be pissed, obviously.

    As far as the mycoplasma/chlamydia/lyme/etc... goes, Dr. Lerner tested me for Lyme (but not IGENEX from what I can tell) and co-infections and never mentioned anything about it to me. I had previously been tested through Stonybrook and Quest, both times the only bands that showed were 41 IGG. I supposed its possible I have lyme, but seeing as my HHV6 titer is very high and over 3 lyme tests I didn't show any "lyme specific" bands, I think its more likely that the virus is whats causing my problem. But honestly, who knows with any of this stuff, right? :) My mycoplasma IGG was pretty high, but the chlamydia pn. wasn't.

    Its worth noting that, my PCR tests from MDL (not done by Dr. Lerner) were negative for all types of mycoplasma and chlaymidia and lyme. I'm not sure I trust a PCR test to definitively rule out an intracellular pathogen seeing as its possible to have any of these problems and not have the bugs hanging out in the blood. Its the kind of thing where if its positive, its significant, but negative I don't think means you don't have it. Seeing as I haven't had "pneumonia" in over 15 years, I can't see why my titers for it would be so high if I hadn't recently had an active infection.

    For what its worth, my PCR tests for HHV6 were negative as well. Before I started Valcyte with Dr. Lerner I inquired w/ the HHV6 foundation to get their take on this and they said its very rare to have a positive PCR test for HHV6 and that it hangs out in the nerve tissue, so its very possible I have active chronic HHV6 but negative PCR. Dr. Lerner seems to think the same thing, but some other very prominent CFS docs don't necessarily agree from what I understand. I don't think we will know definitively until the montoya study comes out. Thats if they are testing PCR, and I sure hope they are so we can put this one to bed...

    My illness was not triggered by EBV, as I had mono in college and it was very mild. My EBV titers show past infection (non existent EA, but high VCA and EBNA) and I have never been exposed to CMV. The current theory is that the HHV6 was either a new opportunistic infection or reactivation when my immunity was suppressed after the operation, or I got it via transfusion.

    As far as hormones go, I really have no reason to have a thyroid problem and thats one big mystery to me. I don't have thyroid antibodies, it doesn't run in my family, and my TSH was elevated with the glandular output low and my thyroid enlarged on the left side a bit. (This is in contrast with some CFS cases that from my understanding have "normal TSH" but their thyroid is still off - as if their brain isn't telling it to increase output) The armour works fine, it normalized my numbers but didn't make any impact as to my symptoms. I was on synthroid for a few months at first and I can't tell the difference. My Dr. hoped switching me to Armour would help, but it didn't really change much.

    I have had a saliva adrenal test. The Doctor I saw previously to Dr. Lerner was kind of a "hippie doctor" and he told me I had adrenal fatigue. My Saliva test showed normal cortisone in the AM, but then it dropped off as the day went on. Apparently the "as the day went on" part of the curve was lower than normal. My DHEA-S was low too. He first tried me on some herb combination that was supposed to help adrenal function called "Adreset". After that didn't help, he put me on low dose cortef. I spent about 3 months on the cortef with no impact on my symptoms. At that point we decided that if low adrenal output was the major thing causing my symptoms, I would have felt much better on the cortef - and I didn't. My hormones are universally low across the board and they weren't even following my operation, prior to the onset of CFS, so its pretty clear that the illness is causing shifts in the hormones - not the other way around.

    As for now, I'm sticking with the Valcyte, at least until Dr. Lerner and I decide if I am responding or not...
  9. chrissy12

    chrissy12 New Member


    I wanted to ask when you saw Dr. Lerner, did he say anything about abnormal T waves on your holter monitor?
    Did he say if your heart was involved with these infections? Thanks.
  10. acer2000

    acer2000 New Member

    Yeah I did have abnormal T-waves on my holter, but I had them on my EKG before I got CFS. In my case, I think they are caused by a heart problem I was born with (thats what my operation was for). My heart function is high normal, so in my case I don't think the "heart infection" theory holds up. Infection is not the only thing that can cause T-wave changes, they can be caused by other things as well. However, if they resolve with the Valcyte I may be proven wrong.
  11. aftermath

    aftermath New Member

    <blockquote> I did neurofeedback from Siber Imaging in Charlotte, NC (they have home units) and found them fabulous. BTW, the gal whom you actually deal with on a regular basis is from Ann Arbor originally and had CFIDS.</blockquote>

    I wasted a lot of money with this outfit and found no relief. If you search this forum, you will see others who have had the same experience.

    I had the QEEG that they did reviewed by others and the opinion was that they had seen better ones from South America.

    The pricing is outrageous, and fact that they push their patent (implying that it is a patented cure) is a sick joke.

    Typical of the lawyers to hand out a patent to cure an illness that the doctors have not even fully identified yet.

    I'd stay far away on this one unless you have about 5 grand to throw away.
    [This Message was Edited on 01/10/2008]
  12. deliarose

    deliarose New Member

    recommended siberimaging and Myra Preston to me..

    I never followed up..and I'm very glad. I think the whole notion is laughable in the context of CFS.

    IMO, the problem is a biochemical one.. and no amount of retraining your brain is gonna fix that.

    Aftermath: Five Grand??!?!?! Did insurance cover any of that?
  13. acer2000

    acer2000 New Member

    I am curious if you could expand on the nature of your positive experience with neurofeedback. What I was told is that sometimes people have transient increases in symptoms they already have that go away after a few days, but that it takes almost 20 sessions to get any persistent shift (good or bad). I was also told that its not possible for symptoms to occur that A) never existed before, and B) were not "localized" to the area that was being trained. (ie getting new frontal lobe symptoms when the central area is being trained, etc..) Has that been your experience? How many sessions did it take to get any shift? Did your symptoms get worse before they got better? Or did you get new symptoms during the process?

    My experience (besides the general unprofessionalism of the practitioner I first dealt with) was that every time I did a session my cognitive symptoms would shift. However, they never got "better" and many of the shifts elicited cognitive symptoms that I had never had at any point in my illness. Those shifts have been 100% persistent, even after only a few sessions (like 3, not 20). So now, as far as I can tell, I am "stuck" with new symptoms that I didn't have before. Those new symptoms haven't wore off, and its been months.

    I could never get any explanation as to what was going on. I was repeatedly told that basically I was the only person to ever respond to neurofeedback the way I was describing. (This obviously could not be the case) And when I tried to press further to get the practitioner to talk to their colleagues or do some more research and try to figure out what was happening, I got nowhere. So anyways, for now I put the brakes on the process and I am hoping that if my illness gets better those symptoms will go away as I improve.

    My experience is probably colored by the fact that the first practitioner I saw basically applied the same "ADD" formula to everyone who walked in without doing a QEEG and without paying attention to actual symptoms and history. I consider him negligent. I sought out the second practitioner to "reverse" whatever inappropriate therapy the first practitioner tried on me, but I didn't respond how they were expecting and when my cognitive symptoms (already bad) got worse under their care and they couldn't explain it, I decided to cut my losses and go on Valcyte. Neurofeedback isn't going to cure the underlying cause anyways unless the cause was a head injury, so I figured thats a good more for now.
    [This Message was Edited on 01/10/2008]
  14. aftermath

    aftermath New Member

    <blockquote>I don't disagree with you on some points regarding the neurofeedback but doesn't it seem odd to you that most of us have had to fork out anywhere between $300-$600/hr not including travel and accommodation to see CFIDS specialists in this country putting our whopping total of one visit anywhere between $5000-$10000?</blockquote>

    My issue was not with neurofeedback, but with the particular practitioner described above. I actually ended my relationship with them and found another neurotherapy outfit that wasn't out to milk me out of every last dime.

    Some of the things I had huge issue with included:

    - Being told that no other neurofeedback practitioners were qualified to treat me because they "hold the patent" on treating this illness (laughable).

    Their patented ME/CFS treatment is like me going out and patenting a cure for AIDS. All the patent says is that the treatment is unique--it says nothing about its efficacy.

    I actually knew this from the beginning, but as was mentioned earlier in the thread, I wanted to deal with someone with expereince in treating ME/CFS instead of just ADD.

    - Being charged $75/session for what were essentially repetitions of the same session re-sent via e-mail. My current therapist does not charge for sessions he sends me to do at home, only in office ones.

    - My care and contact being with a person whose only qualification (at least that was expressed to me) was being a former ME/CFS patient who was "cured" Preston.

    - Numerous canceled appointments on their part.

    Better yet.... With one of the cancelations two of Preston's staff members contacted me separately to cancel the same consult--one gave the reason as Preston running out of town for an emergency and the other told me she was in bed with the flu.

    I should have known something was up when I got down there and was presented with a multiple page contract waiving the right to take any legal action against and instead being forced into arbitration.
    [This Message was Edited on 01/10/2008]
  15. acer2000

    acer2000 New Member

    I'm moving the NF discussion to another thread as I intend to use this one to comment on my experience with Valcyte. Thanks for all the input though...

    the new thread is called:

    Neurofeedback and CFS attn ria

    PS: Aftermath, how do you get this board to do block quotes?
    [This Message was Edited on 01/10/2008]
  16. acer2000

    acer2000 New Member

    So the past few days have been interesting. The first week or so I didn't really feel any different, save maybe a little less appetite. Starting 3 days ago, I woke up crazy hungry and the hunger feeling wouldn't go away no matter how much I ate. This lasted for 2 days. Then yesterday I wasn't hungry, but I was very very agitated. I couldn't sit still, my arms were almost shaking, and I felt a sort of "nervousness" running through my veins. I felt a bit more alert, but mainly due to the anxiety. Then today I'm back to "normal". The anxiety left as mysteriously as it came. Weird right? This is going to be an interesting ride...
  17. aftermath

    aftermath New Member

    The anxiety thing seems to be common.

    I'm wondering if it is a side-effect of Valcyte, or a herx type reaction.

    Is Dr. Lerner treating your mycoplasma titers as well?

    What were your titers to it, and what lab were they done through?
  18. Lichu3

    Lichu3 New Member

    Agitation is a known side effect of Valcyte but supposedly occurs in <5% of people.

    I bumped up my old side effects thread.
  19. erica741

    erica741 New Member

    I had similar bouts of anxiety on and off during months 3-5 on Valcyte. I saw Dr. Montoya during one of those bouts, and he said it was a Valcyte side effect, and other patients of his found relief with benzodiazepines.

    I found the anxiety gave me horrible insomnia too. I highly recommend taking klonopin, xanax or another benzo to help you sleep if that becomes a problem for you. Despite feeling "wired", we really need our sleep.

    Cat, I'm glad your anxiety has calmed down. It's amazing that a homeopathic remedy could help you so quickly. Is it something you can buy in the store?
  20. acer2000

    acer2000 New Member

    I am really happy for you Cat, I know you were struggling w/ anxiety following the Valcyte. I actually found that drinking a couple cups of decaf green tea helps even me out. I think it has enough l-theanine in it to tip the balance in my favor. Thats good cause although benzos work for me, I quickly grow tolerant to them, so going on klonopin or some other drug is not my first choice at this point. Plus, since so many of my symptoms are cognitive, I don't want to interfere *that* much with them while I am on the drug so I can tell if they are improving...
    [This Message was Edited on 01/19/2008]
    [This Message was Edited on 01/19/2008]