why all the valcyte hate?

Discussion in 'Fibromyalgia Main Forum' started by quamijay, Dec 10, 2008.

  1. quamijay

    quamijay New Member

    I'm kinda confused as to why there's so many negative posts regarding valcyte? Of course its not a "cure" and may not even have an effect on some people but if you search thoroughly, there are a lot of cases where people have vastly improved on it.

    IMO theres a lot of negativity on forums like this because those who get better and have treatments work for them obviously stop posting while those who remain ill keep posting.

    Have some faith, good health to all of you.
  2. Slayadragon

    Slayadragon New Member

    Hi Gary,

    (If you come back to this thread.)

    I'm so happy to read that you're doing so well!!!

    I have a question for you regarding your recovery.

    This will seem a bit off-the-wall, but are you living in a different home than you were when you got sick? or working in a different building?

    (Not when you started Valcyte, but when you FIRST got CFS.)

    I ask this because I've been making an effort to talk to people who've gotten substantially better from CFS, regardless of what treatments they have used.

    Thus far, when I've probed deeply enough, I keep finding that people either have a real hypersensitivity to toxic mold and/or have strong evidence of toxic mold exposure in their pasts. In a lot of cases they have no idea what they're avoiding, but tend to try to stay away from places that "feel bad." (This type of mold generally cannot be smelled or seen, and so the "feeling" is all we have to go on.)

    The newest person in this group is StormySkye, for those who remember her. Herbs and supplements helped her with various infections, but she now believes that mold is a very big part of the equation.

    The problem with the mold, for CFS sufferers, seems to be not just the poisoning but that the body develops an anaphylactic-type "allergy" (actually sensitivity since allergies are to benign substances) to the poison.

    As with some peanut allergies, tiny bits of the "allergen" (e.g. poison stuck to items that briefly passed through moldy structures) can result in huge declines in health. With constant complement activation, the pathogen-fighting part of the immune system falls away, letting all kinds of bad bugs (some very bad) to take over.

    Moving away from a moldy environment usually doesn't help CFS sufferers a lot, since in many cases they still get enough ongoing mold exposure to keep the complement activated. However, I think that it may be that when some of those people take antivirals, their immune system starts to reset itself and they get better.

    Those folks who take antivirals while they're still in a moldy environment may not do so well though. That was my own experience last year.

    It seems very clear at this point that there's a toxic mold connection to CFS. How it ties into antiviral use is a little more muddy though.

    An update on me: I'm now absolutely well with no symptoms whatsoever, insofar as I avoid mold poisons to a sufficient extent. Far more healthy (and happy) than any 44-year-old has the right to be. Considering that a year ago I was in bed 18-22 hours a day and had/have an absolutely classic case of CFS, this is saying something.

    It's taken a lot of work (detoxification and scrupulous mold-avoidance skill) to get to this point though.

    Right now I'm addressing Lyme with antibiotics, and am considering trying an antiviral at some point. It will be interesting to see if I can lower my mold reactivity that way, and thus perhaps not have to be as diligent about the mold avoidance. It's a lot harder to avoid mold poison molecules than it would be to avoid peanut dust!

    Anyway, Gary, it's nice to run into you here. Please do let me know your thoughts.

    Best, Lisa (lisapetrison)
  3. Slayadragon

    Slayadragon New Member

    I'm so glad to hear you're still doing well, Cat!
  4. wendysj

    wendysj New Member


    I'm new around here but I believe you're right...

    No one really knows the answer or I wouldn't be feeling so bad right now... I would be on a treatment plan that works for everyone.

    I think it's important for everyone to keep trying things until they either prove they work for all of us or absolutely do not work for any of us. Then they can put the idea proven NOT to work to the side and move forward on the unproven ideas.

    It's great to hear that someone is doing well from this treatment!!! It didn't work for me. (I wasn't on a formal study or a being treated by a specialist - my doctor just said, "Looks like a virus. Let's try this for a while".)

    Actually, it's just awesome to hear someone is feeling better!

  5. mindblower

    mindblower New Member

    "...you search thoroughly, there are a lot of cases where people have vastly improved on it."

    I'm not a valcyte hater nor do I consider myself a valcyte expert, but what I've found from my own lengthy research into it and the history of antimicrobials for this diagnosis definitely makes statements like this seem a dramatic overstatement. I don't know what every person commenting on valcyte has said on this board, but if you check my specific posts here I've recognized it as well as ampligen, non-oxidized whey protein, and brain meds. as has having the capacity in some to silence infection.

    This may explain some of the significant modest benefits that I and some others that have posted on this board have clearly experienced with these treatments. But to suggest large numbers of people have had "vast" improvement is suggestive of cure and seems to clearly distort the realities at hand about valcyte.

    My comments have been based not only on many several cases I've investigated of those who've been on valcyte and these other treatments over the years, but what many professional experts in the ME/CFS field are saying about it, like the well known and respected Dr David Bell recent comments about the latest Montoya study. Then Dr Lerner's still apparently unvarifiable great claims about valcyte are of even greater concern.

    But still, no, I don't say bash valcyte nor keep it from patients who feel they must try it at this point. I'm saying put it into perspective and realize the types of results we're seeing in some from it can be and have been observed on other treatments; some improved, some nothing, and some feeling worse.

    No breakthrough, alternative research paths should be explored, but I respect those now trying it and those having derived benefits from valcyte nevertheless.


  6. SusanB49

    SusanB49 New Member

    Hi, Lisa
    Your post jumped off the page at me. Yes, I lived in a house with black mold. I had to abandon it, then sell at a loss, "as is." I was diagnosed with CFS in 1/04, along with my son. I left the house in May '06. I tried everything but did not begin to improve until recently, two years out of that house. My son had about a 75% improvement, spontaneously. I didn't do as well. I'm currently on Valcyte. Very, very tired. I am glad to hear you are well, glad to hear when anyone is well, b/c that means there is hope for us all.
    PS Have you ever tried Dr. Shoemaker's protocol?
  7. quamijay

    quamijay New Member


    Can you explain more or provide some links about CFS and mold? I dont personally think this is my problem but I'm interested.

    Thanks :)
  8. quamijay

    quamijay New Member


    I understand and respect your viewpoint. Can you explain why Lerner's claims are unverifiable? To my knowledge no other studies have replicated lerner's exact methods.

    Even though I didn't say it, I dont see what is wrong with suggesting valcyte is a "cure" for some when there are a subset of individuals who have improved 80% to 90%? Obviously its not a cure for cfs but it is defininately a step in the right direction.

  9. Slayadragon

    Slayadragon New Member

    I don't want to turn this into a mold thread, but I will briefly respond to the questions.

    Dr. Shoemaker is absolutely brilliant. However, in "Mold Warriors" he admits that his protocol does very little to help patients who have CFS.

    In the book, a chapter is devoted to a fellow named Erik Johnson (formerly of this board under the name erikmoldwarrior). Erik was one of the patients in the original Incline Village cohort in the 1980s, where Dr. Peterson and Dr. Cheney got the CDC to recognize CFS a real illness.

    After a lot of trial and error, Erik decided to try to address what he knew was a sensitivity to toxic mold. Eventually he got really good at it, and to his amazement his illness went together altogether...as long as he kept up his avoidance strategies.

    Over the past year, half a dozen folks with CFS (all of this board) decided to try Erik's approach. We all were just random CFS sufferers, none of whom had any idea in advance that toxic mold might be an issue for us. It turned out that we all had toxic mold reactivity. All of us have, by following Erik's approach, obtained substantial improvements or full recoveries (again insofar as toxic mold is avoided).

    Erik is in frequent communication with Dr. Shoemaker, who of course is interested in this "extreme avoidance" approach. There's nothing written on it yet, but I'm in the process of putting together a book on it. Erik has been working on this for 20 years, and his approach is quite detailed and information-dense. I'm going to distribute it free of charge (at least for a while!) to CFS sufferers, since it's important that people are able to gain information about it. Those interested can write to me at Y! and I will send you a copy when the first draft is finished.

    As a side note, I would highly encourage anyone who thinks that they might have a toxic mold problem in their home not to go hire a remediator to look for it. That will cost a lot of money and not fix the problem to the extent that CFS sufferers need in order to improve. Even more importantly, DO NOT go looking for the mold yourself or try to remove mold that you know exists. This is a very dangerous thing for anyone to do, and for CFS sufferers often results in extreme negative effects from which many people never recover.

    CFS patients have a hard enough time as it is without risking getting any sicker. Toxic mold is dangerous and sometimes deadly stuff. Be safe!

    Best, Lisa

    [This Message was Edited on 12/13/2008]
  10. mindblower

    mindblower New Member

    "Can you explain why Lerner's claims are unverifiable?"

    This would be something for him to explain, not me or anyone else. Which is exactly why the 80-90% improved subset he seems to claim remains of questionable existence; no new studies to support it, no one in this community posting here or elsewhere I could find claiming this sort of result from using his protocol, and recent comments by other well known experts in the field of ME/CFS seeming to contradict him.


  11. stschn

    stschn New Member

    It is wonderful to see Cat here again she was so helpful to me on the mb as we went through the Valcyte journey. I have gotten improvement not anything like hers but I am a lot older and have been sick a lot longer. I have often felt as she has about the reaction to the work Dr. Montoya has done for us. I am just chalking it up to the need for instand gratification that some of us seem to have. I know the trial will give us some answers and yes it is frustration to have to wait for the results. Many of us have been waiting for years for someone to believe in our illness and try to help us find the answers. I really hold this man in high regard.
  12. mindblower

    mindblower New Member

    I didn't realize Dr Shoemaker made comment that his treatments don't work very well for those with ME/CFS. But since erikmoldwarrior is banned from posting here, where does he post online these days for those interested in discussing whatever health symptoms they feel might be from mold exposure?

  13. Slayadragon

    Slayadragon New Member

    Hi MB,

    Check CFS United.

    The comments about mold and CFS are in "Mold Warriors," chapter 4, in the section about complement (C3a).

    Best, Lisa
  14. quamijay

    quamijay New Member


    there are a lot of people in the community who have recovered on valcyte. If you'd like I can find some and post them here. Just reply and I'll do so. As I said, there are infinately more negative than positive posts regarding therapies on message boards like these.

  15. mindblower

    mindblower New Member

    "If you'd like I can find some[ME/CFS cases recovered on valcyte]..."

    If you can have just 5 to 10 ME/CFS cases, themselves, come post here that we could talk to about their stories that aren't family or financially connected to Dr Lerner, and that have had his claimed 80%-90% reported recovery, having remained recovered like this for a good while(1 yr+ hopefully) as result of his valcyte protocol, this would help start to clear up a lot of mischief.

    It would help support your belief that "there are a lot of people" that have recovered this way rather than the modest, by comparison, common result known to be attained by some from the other treatments mentioned above. But it would need to be them posting here to be clear, to help us realize their credibility.


  16. ladybugmandy

    ladybugmandy Member

    i think erik still posts on the HHV6 foundation message boards.

    i thought he left this board of his own volition?
  17. quamijay

    quamijay New Member


    I cant get people to post here, but heres what 10mins of searching dug up. Not all were learners patients, but none were testimonials from his site.

    I am pretty much completely recovered after Valcyte treatment. I did this before the trial started and so far no relapses. I never had the negative reaction that others complain about. It may be because of all the vitamins i took as well. Or perhaps some people have additional infections that i didn't have. I know of others who didn't have the bad reaction so it does not happen with everyone. I just VERY gradual improvement with occasional down days. i kept getting better after the six months was over.


    I don't intend to get "flamed" or dumped on and not respond. Having
    suffered from CFS long enough to know what the members of this list deal
    with, I feel it is my duty to inform any and all that the research
    discoveries have been made, that the limited trials have been funded by
    major pharmaceutical firms and have been successful, and that any of you
    can do as I did and (for a not-inconsequential) price be relieved of
    your CFS symptoms.

    I have no idea why CFIDS Association treats Dr. Lerner's breakthrough
    research so evenhandedly that the average reader can't tell that it is
    any different than that done by hacks who are gaming the the Federal
    medical research grant system. This voluminous body of research has all
    been published in peer-reviewed medical journals. I have previously
    posted Dr. Lerner's web site URL. Lay summaries of the research are
    posted there.

    I do know why so few MD's have any knowledge regarding CFS. They tend
    not to follow research outside their specialty field. And even then, the
    amount of information is overwhelming. Further, the two drugs, Valtrex
    for Epstein-Barr virus infection, and Valcyte for cytomegalovirus
    infection are prescribed off-labe by Dr. Lerner. Both have been
    approved by the FDA, but not for treatment for these viruses in CFS.

    I know for a fact that Valcyte has been approved for treating CMV caused
    retinitis. Prescribing a drug off-label puts the physician in the
    position of facing greater risk in a malpractice situation. A physician
    prescribing any drug off-label needs to be certain of what he (or she)
    is doing,and should follow a regimen that closely monitors for side
    effects. On the other hand once the drug gets into the blood stream it
    acts on the virus wherever the virus is. In my own case, my heart
    function has returned to normal, I do normal homeowner things like
    mowing the lawn. pruning shrubs and painting without the feeling "if I
    don't stop this right now I'm going to collapse". That was the scary
    reality for me before taking the Valcyte. Now its just an unpleasant
    memory. I can do aerobic exercise without having to take a nap. It is
    apparent to me (this is my opinion, of course) that the virus affects
    other parts of the body as well, That this might be so explains why my
    irritable bowel syndrome symptoms, which I had since the original onset
    of my CFS in 1987 disappeared after only two weeks on Valcyte and also
    why the pain and stiffness in my knees that I've had for the same length
    of time disappeared, allowing me again to do deep knee-bends and to

    As I have mentioned before, if you want to wait for the FDA to bless
    these drugs for use in treating CFS that is your prerogative. In my
    opinion it may never happen because it is up to the pharmaceutical firms
    to decide on which drugs to invest their limited capital resources for
    drug approval trials. This is a tedious, expensive process that is
    intentionally designed to prevent approval of dangerous drugs, as
    opposed to a system which would efficiently evaluate and approve useful
    and valuable drugs. The Europeans are every bit as sophisticated as we
    are, they were the ones directly involved in the Thalidomide scandal.
    New drugs are approved there several years before they are approved by
    the FDA here. Considering the cost and financial risk, the
    pharmaceutical firms will invest in trials of new drugs which will offer
    them the greatest possible return on investment. You as a CFS sufferer
    my not like that kind of approach, but it is absolutely correct in terms
    of corporate governance. Besides, Valtrex and Valcyte are already on
    the market. Roche has other drugs in the pipeline, targeting other
    illnesses, that need to be approved.

    Regarding the practical steps you can take to obtain the treatment I've
    had, if you are within easy reach of Detroit, or air travel is not a
    problem you can contact Dr. Lerner's office directly. Otherwise, I
    suggest finding an infectious disease specialist (they treat AIDS
    patients, the ones who get CMV retinitis) and, if he or she doesn't
    already know about Dr. Lerner's diagnostic and treatment protocols,
    refer the doctor to Dr. Lerner's web site where the citations for the
    research can be found. The research was available in its entirety
    several years ago, but is now only on access-restricted web-sites the
    MD's can get to but not you and I.


    was going to wait until I officially reached 6 months on Valcyte to post, but I'm too excited to wait. I can think, read, remember, do math, study, exercise, go to bed at 11, sleep only 8 hours, wake refreshed, work full time, go back to school, have a social life, and hobbies. I have it all back! After 4 years of nothingness...struggling to work just enough to keep a roof over my head and health insurance, dropping out of school, excommunicating myself from society, and sleeping, sleeping, sleeping...I am NORMAL again!

    I began Valcyte June 16 2008. I felt extremely sick after the 3rd pill, and off and on for the next 12 weeks. But gradually, starting around week 10, my body came back to me, mind first. With the return of my mental faculties I enrolled in school, continuing to work part time, and bicycling (commuting) 8 miles 3 days a week and doing yoga once a week. I have been able to keep up this rigorous schedule and have a personal life for over 8 weeks now without missing a beat. (I got a flu shot and felt a little low for two days but pulled out of it back to normal by the third.) I've been averaging around 8-9 hours of sleep, feeling great in the morning, and not desperate for a nap in the afternoon. (Pre-Valcyte I couldn't even work an easy 30-hour week without getting at least 10-11 hours and even then dragging myself out of bed in the morning and feeling exhausted all day.) My heart doesn't do those scary palpitations anymore, the daily headaches are pretty much gone, no more postnasal drip or sore throat, bright light doesn't hurt my eyes, and I'm not sure I can even find my lymph nodes anymore. I have not felt this good since before I became ill in August of 2004. I'm feeling better and better every day. It's too early to say I'm cured, but I have certainly experienced recovery to 100% functioning and near 100% resolution of my symptoms (still have the TMJ). I have not had my EBV and HHV-6 titers re-tested yet.

    I am now at week 21 on Valcyte. With only 5 weeks left in my prescription I am making plans with my doctor to transition to Valtrex. It sounds like the Montoya protocol is 1 gram per day for 6 months - is that correct? What have others' doses been with Valtrex post-Valcyte? Has anyone stayed on Valtrex longer than 6 months? I know some have described herxing again - any other unexpected effects? I tried high does Valtrex 2 years ago and didn't experience anything, so I'm not too worried. In general, I would like to know anything and everything I should be doing in the next 6 months to try and maintain the recovery I have achieved so far. I'm scared to death of having to go back to fatigue after these few months of bliss. I just don't know if I could handle that. Please let me know what you or others have done to maintain recovery post-Valcyte


    I am doing quite well. I still have some symptoms but am at about 85% max functioning. I am back to working 3 days a week, and exercising 3 days a week. No, Rubyart has not stopped Valcyte. No, Valcyte does not cause one to become emotional labile, at least not in my case (Look closely at the source of this information. Note: I am not bipolar. I don't claim to know how it affects those with mood disorders. It has helped me to avoid becoming emotionally entwined in negativity). No, Valcyte is not worse for women than it is for men based on those I've talked to.

    My doctor has followed my bloodwork meticulously. My WBC count went down slightly at the start and then resolved. I am still taking antibiotics in addition to Valtrex, and other herbs/supplements that I've found incredibly helpful along the way. I have no pain, my depression has lifted, and I have regained mental clarity. I feel the fullness of my life returning, and each step is amazing.

    I believe Valcyte to be just ONE of the things that has facilitated my road to recovery. I began this protocol in January so it has only been 5 months. My good days are great and my bad days are manageable. This is the healthiest I've felt in a very long time.

    If, and only if, it is helpful to others, I will check in intermittently and provide more information about what I am doing to recover, but am not interested in arguments or interrogations. When you are ill for a very long time, you eventually learn that you must monitor how and where to expend your energy. This is BY FAR, the most important advice I can give on the journey to healing.

    Best wishes.


    Hi Lisa, My daughter is 26. I noticed in your profile that you've had alot of issues with candida. She also has, and was on diflucan and other natural yeast products for over 1 year. She's still on the candida diet. Knocking down the yeast did not help her symptoms much. Prior to the Valcyte she was on Zythromax and Bactrim for several months. They helped quite a bit, and only caused a minor flare up in candida. Valcyte seems to be cleaning up any remaining problems. She's now doing martial arts daily! I don't recall seeing her this active and happy.


    My apologies for such a long absence....It has been a long, rough ride, but I'm finally seeing the light at the end of the tunnel. Additionally, because I was in the Valcyte trial, my doctor had asked that I not talk about the trial on message boards, and because of this, I felt it was easier to simply not post at all.

    I have now been off the Valcyte for 9 months. As another member also states, if I were to measure how effective Valcyte was after 6 month following discontinuation of the drug, I would have been very disappointed. Before stopping the drug, my nervous system was a mess, starting around five months into the drug (I was on it for 6 months), and I began to feel on the verge of a big panic attack all the time. This continued for several months after I stopped the drug but was corrected after a few visits to a homeopathic MD.

    Last spring was intense, with the failing health of my mother-in-law, and her eventual death, and my husband’s ongoing bitter custody battle with his ex-wife. I felt like the sadness and negativity was keeping me from ever being able to heal, but then around June, some of my CFS symptoms started to lift. My cognitive function had already improved to 100% (several months into Valcyte), and now the weird crashes had stopped. Fatigue was no longer a problem, really, although my stamina was still weak. In August, my husband and I started riding our bikes again, and on long rides (8 miles). The first time we did this, I worried how I would feel the next day, but I was fine. I have walked some on the treadmill, but my body seems to respond better to exercise done while I’m sitting. Biking is perfect for me, although shorter distances are better.

    The last area that needs improvement is pain. There’s two types of pain: nerve pain, and an overall achiness. I have tried literally everything to get help for the pain and it’s made me desperate at times. I’ve tried Lyrica, Neurontin, acupuncture, homeopathy, painkillers, pain clinics, massage, hot baths, etc. Nothing worked, although the painkillers gave me back some quality of life. Some family members had been asking me for years to have my blood analyzed by a naturopath, so I finally had that done. The naturopath told me that just looking at my blood work told her that I was in significant pain. I am now taking some supplements to correct my body’s inability to process protein, and a resulting protein deficiency. My triglycerides are very low because of the inability to process good fats and proteins, which creates a lot of inflammation in the system, a lot of pain. It explains why my nerve endings feel raw and unprotected. Because of the pain, my adrenal system is really worn down. I notice that when I go through a bad pain cycle, that’s when I’m really fatigued. When there is no pain, there is no fatigue. Just several days after starting the supplements, my pain started to subside.

    I have been building up my stamina and am able to leave the house for hours at a time, running errands, or meeting friends for lunch and a movie, with no payback. I’m still allowing for a lot of rest every day. I spend a huge chunk of my day reading, and I’m reading 3 or 4 books a week – making up for lost time.

    I’m kind of on a health kick right now, keeping a low acidic and very healthy diet (my blood ph was hyper-acidic, an environment viruses love), and using natural products not only in my body, but on the outside. No coffee, no alcohol, no wheat/gluten, no dairy, and no sugar. I tossed out the sugar substitutes and use stevia instead. I notice a huge difference when I eat something I should not, and the pain returns. I am taking as few medications as I can get by with, along with supplements to correct the deficiencies. I feel like I am on track to possibly return to work in January, at least part-time, although my doctor is more wait-and-see on this.

    When I can, I will share my titers, and how they have changed over the last year, along with some other measurements that I think you’ll find interesting.

    Sorry again for the long absence, and I will try to post more regularly moving forward.



    Hi All~

    Just completed my ninth month on Valcyte and thought I'd give an update. Life is good! I continue to make progress and am living a full life. Here's the latest.

    After almost three years of fragmented sleep I'm consistently getting a good night's sleep only waking once per night for a potty break. I've had only one night in the last month that I experienced fragmented sleep.

    Another absolutely terrific milestone is that I haven't experienced anxiety in about three weeks. None, zero, not even a little. I've had to live with that symptom since the onset of my illness so this milestone is significant.

    The mild symptoms I continue to consistently experience are skin burning, stiff neck, mild fatigue, GI stuff and low back ache. Once in a while I'll have an episode of some old symptom. A few weeks ago I had an episode of depression, sore throat (which I hadn't had for months) and elbow rash (one elbow) which lasted for about five days.

    I'm currently able to tolerate a full day of activity although I feel I still have a little way to go before I reach full recovery. I'd say I'm functioning at 90% of pre-illness. I'd love to see my memory and endurance improve (so I can run again!) and the symptoms in the last paragraph disappear, forever.

    I have an appointment with Dr. M. next week. I've had my blood work but don't know the results yet. I'll keep you posted on that. I did test positive for the enterovirus. I'm not sure what he'll have to say about that. I also began synthroid for low T4.

    Well, that's about it. To those who are beginning the Valcyte journey, hang in there. It's a slow process but worth it. I think about all of you and hope (and pray) for your full recoveries.


    I was on Valcyte for 7 months. I was much worse following the valcyte treatment then before I started the medication. I've been off the medication for almost one year. My improvement off the medication has been slow but progressive. My cognitive function has returned 100 percent. Presently I'm close to 85 to 90% of my pre csf physical function.

    It appears to me that recovery for some takes a long time. If I were to measure how effective Valcyte was after 6 month following discontinuation of the drug, I would have been very disappointed.

    I agree with lichu3 that Montoya is probable waiting to see how many patients continue to improve with longer follow-up


    i had my last dose of valcyte June 6th, 2008. i was then put on valtrex for a couple of months, asked for a less expensive alternative and Dr. Montoya put me on Acyclovir, which i am now taking.

    i have responded favorably to the valcyte; have lost sick cfids feelings in head and body that were continuously with me (i'd also get terrible all-over aching in my body so that the slightest movements hurt). this is just astonishing to me.

    i was recently able to make a trip for the first time in two years back to my home state. i had period of backlash when i returned to Calif. (my head reverted to the sore valcyte state i had been in for months and months) but i came out of it over 3-4 days, and again note that gains have definitely been made.

    it will take time to fully assess, and i do need to upgrade my physical status when and as i can- i'm very weak and susceptible to injury and energy crashes. i know i must rest, rest, and rest some more for some time to come.

    but for me, valcyte seems to have put me back on a good track, and i am very very grateful. i wish it would be this helpful for every single person trying it.

  18. ladybugmandy

    ladybugmandy Member

    wow. i thought i had read all the valcyte posts on the net many times! where did you find these?

    come to think of it, i havent checked the HHV6 foundations boards in a while.

  19. emmally

    emmally New Member

    I have a love/hate relactionship with valcyte. I hate it for what it has put me through ( I have never felt this sick in my life, even prior treatment) but love it becuase I am beginning to see improvements and it could be the medicine that saved my life. But I dont want to jump the gun because I just started feeling much better this past couple of days. As of thanksgiving, I could barely sit at the table and eat. I was beggining to doubt valcyte since I am on my 6th month and almost as fast as the flare ups come on, I began to feel way way better..I am beginning to have a vast improvement in my physical strength but still have a long ways to go. I know that this is just the beginning of my recovery and I have to take it very very easy. Even if I felt like I could go to the gym or shopping at the mall, I will sit tight in my bed and know that my time for fun will come and that I am not ready...I know that my body has been thru he%% in the past few years and that recovery will be a long long long process and I will not jepordize it by jumping the gun and trying to do too much... Yesterday I felt well enough to go to the mall with my mother and even considered it, but than my concious jumped it and said "are you crazy?"..Its not worth it.... I really hope and pray that these feelings are just the beginning...But if I do go thru a flare again, than I will know that the valcyte found more little buggers trying to hide out and that it is doing its job...
  20. ladybugmandy

    ladybugmandy Member

    i wish i had rested when i was improving! i had energy for the first time and did too much - again. then, i crashed big time and am still sick!

    i am so happy for your improvements!!!!!!!!!!!!!