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Positive valcyte experiences

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by vli, Nov 22, 2012.

  1. vli

    vli

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    Sorry if this seems lazy, but I really do need to collect a number of positive experiences in a rather short space of time. I am in week 40 of Ampligen and long story short, will be stopping either after another two months or after 3 infusions depending on how I feel in the coming week. I knew there was a larger chance than not that ampligen would not "cure" me, but I am devastated by the little progress i have made in these 40 weeks (perhaps an increase of 10 on the Karnofsky scale). I really need some positive reports of valcyte working or helping ppl because i've wasted an unbelievable amount of money that was my parents' by coming here (from Hong Kong) and pursuing Amp., and due to this they are grilling me about what I'm going to do when I go back to HK. I know undcvr, SOC and heapsreal have all posted lots abt how valcyte helped them, but if anyone else who has positive experiences can post them too, I'd be super grateful. I am completely clueless about what to do now and I owe my parents an enormous debt as well as an answer to their question of what I plan to do next about my illness.

    Thank you so much.
    MishMash likes this.
  2. MishMash

    MishMash *****

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    vli,
    I'm sorry you didn't benefit from Ampligen. I think the best thing to do is to put aside more expensive drug treatments and try and restore relations with your family. It's hard, but learn to live within your limitations. If you have lived a normal, successful, happy life, and suddenly you must face daily sickness, it is very depressing. Many of us share your experience. It's simply terrible.

    When a true cure or treatment comes around for ME/CFS, FM and diseases like that, you will hear all about it in the news. There is nothing like that now. Don't believe rumors. People will tell you personal stories about the magical properties of this or that drug. They don't exist. For now just be patient.

    Good luck.
    AFCFS likes this.
  3. vli

    vli

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    mishmash, i appreciate your good intentions but i'm not sure i agree with this. i don't know the stats so there may be more negative reports of valcyte than positive but it's undeniable from the MANY posts SOC, heaps and not to mention undcvr made that valcyte helped them A LOT. Are you saying they're fakers and posted fake reports of positive val. experience on PR?
  4. MishMash

    MishMash *****

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    vli,
    Do you remember when the news media reported the discovery of the XMRV as the cause of ME/CFS? I wanted to believe it was true also.

    I took it as a personal offense when scientists and honest people asked for solid evidence. It turns out I, and many other people, were completely wrong. We all wanted to believe it was true. Nobody was faking or lying. But in science, sometimes rumors turn into fact. Don't take anything you read in this forum as a basis for treatment. It is meant to be informative, not factual.

    If Valcyte turns out to be a benefit for ME/CFS or FM, I guarantee you, you will read about it in the NY Times, Washington Post, Yahoo, Google news, Hong Kong Daily News, etc etc. The news does not miss anything like this. Then you'll know what's really the truth. If it even provides 30% benefit, you will read a story about it in the news.

    I assume money is still an issue too. Because the Valcyte is extremely expensive. You may spend another $20000 or $50000 purchasing this drug to find out it does not work.

    There are other drugs coming out, for other diseases, that may help you in just a couple of years. I would hold on to whatever funds I had left and take a proven medicine.
  5. ukxmrv

    ukxmrv Senior Member

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    Vli,
    Have you tried Valtrex at all? Just asking to see if you had a good response to this as an indication. It is my good response that would encourage me to at least try Valctye if some ever came my way.

    I've heard that there are some cheaper sources of Valctye around and I hope that Dr Enlander has told you about one of them.

    It's a very hard decision to make. You must be devestated that Ampligin has failed to provide more than a 10% improvement. I'm really sorry to hear this.

    Your parents want to see you well again and I'm sure that you don't see you as wasting their money.
  6. Ema

    Ema Senior Member

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    Do you have high viral titers?

    I would suggest reading what you can by Drs Lerner and Montoya to see if this is a profile that fits you.

    You might start here:

    http://forums.phoenixrising.me/inde...e-guide-for-practitioners-me-cfs-video.15254/

    I also found this blog helpful:

    http://vlgonvalcyte.wordpress.com/

    I've taken Famvir for about 9 months now and I do believe that it has been helpful but it is not quick and it is not a cure. I think of it as an adjunct to other therapies to help reduce the load on the body so that my own immune system can kick in again. I have Valcyte as well prescribed but I have not started it yet.

    Ema
    vli likes this.
  7. snowathlete

    snowathlete

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    That's quite a bit different though MishMash. That was a study finding a pathogen, not a study looking at a treatment. Also, it was just one group reporting it, no-one else found the same. With herpes viruses you have lots of different doctors finding a link in ME patients and having accepted mainstream evidence using proven tests, that at the least show that some ME patients have herpes virus problems. Whether this is the cause of ME or an opporunistic infection is still a subject for debate.
    Nonetheless, some patients have improvement with these treatments and that can be shown not only by their reports but by tests that prove an improvement in the body. It is therefore fairly well accepted that some ME patients do improve with anti-herpes treatments.
    This is reflected by the fact that a number of insurance firms do pay out for anti herpes meds for ME patients, whereas to my knowledge they never paid out for anti-retrovirals for XMRV, or much else. Thats because the levels of evidence were different. If there wasnt at least some evidence then there is no way that the insurance firms would be paying out for these treatments. It is basically undeniable that some patients do benefit from these treatments, there are too many people saying that they did and too many published papers saying that patients did. As yet though, not enough papers saying that enough patients improve, and so it is not yet a cure for all, but probably a treatment for some.

    To answer the original OP:
    I think herpes anti-virals are only worth thinking about if herpes might fit your personal past with ME. For me, it does and that is why I am looking into it myself. I have been looking for a while and reading lots of research papers and talking to as many people I can who have some experience of it. Valcyte seems to be the one I hear most often in unison with reports of sucess. It is also the least tollerated by some ME patients. Valtrex is next in terms of non-tollerance and affect, with Famvir being pretty well tollerated and perhaps as affective as Valtrex, though there is perhaps less medical research on it with ME.

    Valcyte is expensive. I probably cant afford to try it. If it was more certain then I could perhaps make the money from somewhere, but I cant afford it on the chance that it would work. Hard to be sure how affective it is, because we dont know why it works on some and not on others. If money was not too big an issue then i would try Valcyte, but if not then Valtrex or Famvir might be worth trying.

    Its worth getting the relevant blood tests for such herpes viruses first, to see if it is even something you might benefit from. If it is and you decide to try it then if you are lucky it will work. What are the chances? Hard to say, if you fit the profile then maybe somewhere between 10-50% chance, but very hard to know. There is no guarentee. But if you do nothing you will be waiting an unknown amount of time.
    It is not worth bankrupting yourself for or risking your house or anything like that, but if there is some money avialable, then in my opinion it is worth trying.

    I hope to start Valtrex or Famvir soon, though I will have tests first to see if herpes viruses are a real factual problem for me. If not then im not sure there are many alternative options with as much evidence as this.
    Nevertheless, faced with these circumstances, I might still try something, even though the chances of sucess might be quite low.
    charlie1, vli and heapsreal like this.
  8. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    If Valcyte turns out to be a benefit for ME/CFS or FM, I guarantee you, you will read about it in the NY Times, Washington Post, Yahoo, Google news, Hong Kong Daily News, etc etc. The news does not miss anything like this. Then you'll know what's really the truth. If it even provides 30% benefit, you will read a story about it in the news.

    Mishmash do u only believe whats in the paper, justin beiber must be the most influencial person in the world he should be president??

    I dont know why you are so anti any treatments even when a number of us are saying they have helped and a larger blog by cort about the positive effects of antivirals on a sub set of patients is very helpful. I think u are just choosing to see one side and ignoring many of us who have said we have had positive effects from antivirals.

    Trying to build ones relationship with family members sounds noble but its hard to do when your sick all the time and/or family members dont believe u.

    Your basically calling all of us with our personal stories liars, and twisting things to suit your train of thought, sure your not simon wessely cause you sure sound like it. will you tell vli next to do graded exercise because you read it in the NY times, so it must work.

    Know one is saying antivirals is a magical cure for everyone but gee it sure has helped quite a few, its a good each way bet that it can help many.
    K2 for Hope, SOC, Omar88 and 2 others like this.
  9. vli

    vli

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    I agree w you, heaps, but i hv to thank u ESPECIALLY for the last paragraph in this bit of your post that I chose to quote. The "family members don't believe u" thing applies ESPECIALLY for me
    :hug: *heaps
  10. MishMash

    MishMash *****

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    Heaps,
    There's no arguing with somebody who attacks the skeptic. Basically the onus is upon Dr. Montoya to show to the world that his therapy provides something beyond placebo. I am perfectly in my rights to ask for solid, scientific proof.

    So far that has not been proven. Starting from Dr. Lerner, till right now, I have seen nothing. Everything seems to be pending all of the time with this drug anyway. Killing herpes viruses was postulated decades ago as a way of treating ME/CFS. People have tried it many times. It has failed.

    No, it is exactly like the XMRV hysteria; in that Montoya has supposedly isolated a pathogen; except he is killing it. I got temporarily suckered by the XMRV thing, but never again. Especially if the practioner is asking lots of money for his drug. This situation is very much like Ampligen too.

    Any drug that significantly reduces the symptoms of ME/CFS will instantly get world media attention. Why on earth would a company want to keep this a secret? Your argument makes absolutely no sense.

    VLI-- you have already wasted a lot of money based on hearsay, rumor, he-said she-said. You are going to further waste your money if you put it into this unproven drug. It will be the same experience as Ampligen. Just wait till something proven comes along.
  11. vli

    vli

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    DARN i just wrote a reply thanking everyone and the computer lost it.
    I am now super tired and hope nobody minds if I just try to answer the Qs by quoting posts I made in the past.

    From Sep 21: "Hi heaps, I just got my blood tests back today, HHV6 AB IGG was out of range 1:160 while IGM was in range 1:20, but these are the *exact* same results I had back in Jan. pre-Amp. The ONLY significant diff. in my labs between now and January, (i.e. after 6 mo's of Ampligen) is that my NK cell function has gone up from 4 to 22... because my labs have NEVER shown me to have a current HHV6 infection Dr E has never felt this a super important area to look at, and he told me today that he didn't feel repeating the stomach biopsy I did in Belgium with Prof de Meirleir would be useful, because he said it wasn't unusual for such biopsies to show the virus because it was "latent" (i am no scientist but this was the word he used in his attempt to explain to me), despite my last year's biopsy showing LOTS of it. (I did want to ask him what the point was of doing a biopsy then, but I was too brain-fogged to know how to phrase it in a polite way.)"

    Sep 26: "heapsreal, thanks so much :)

    If you don't mind my asking what's your PERSONAL opinion on whether the AB IGG should go up or go down? Just logically. If you were too weak to produce antibodies to the virus to start off with and the immune modulator is now strengthening your immune system to make more antibodies than before, is it reasonable to think it should go UP?

    P.S. I haven't consulted w/ Dr E further on this b/c he's of the opinion that the blood tests should be taken as gospel, that if the IGM is in range you don't have a current infection. Since this is his line of thinking I can't try to ask him about the IGG since he considers it irrelevant :("
    Sep 28: "BTW, short of what's quoted off of the HHV6 foundation website itself, are there any other authorities (any physicians???) who say that EVEN tissue biopsy is not enough????? This is what Enlander said to me in a nutshell. He said he did not think too much of the stomach biopsy I did last year with K De Meirleir because he said even if the HHV6 in my body was just latent, they could still have found a super high level of it in my stomach. I personally don't agree with this, but I have no evidence to back up my view (Enlander told me that even after I told him what the foundation website said).

    Incidentally, the ton of hhv6 they found in my stomach was hhv6-b, not a."
    This last post I wrote in response to my doc ignoring my quoting the hhv6 foundation info to him, which is: "Short of a tissue biopsy, it may be impossible to find direct evidence of chronic HHV-6 infection." http://www.hhv-6foundation.org/associated-conditions/hhv-6-and-chronic-fatigue-syndrome
  12. vli

    vli

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    MishMash, just answer me this.

    do you NOT think valcyte improved undcvr and got him to the stage where he is now (regardless of the fact that he did not have the most severe cfs, he now considers himself fatigue-free)?
  13. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Vli i dont have hhv6, my problem is cmv so not fully upto date on hhv6 a and b, but yes i would think an immune mod would/could increase titres as the immune system strengthens. Personally viral testing and specifically level of titres correlating with severity of illness i dont think is black and white, the most important thing is that the viruses is detected not so much titre levels, i think the only way then to know for certain its an issue is to treat it and if improvement occurrs u know the answer. Thats good your nk function has improved, thats showing ampligen is working. I think if u could stay on amp abit longer and start the valcyte might start to get you results your after. Im thinking maybe Dr E has most of his eggs in the ampligen basket which is why he promotes it more so then antivirals but im just speculating.
    vli likes this.
  14. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Mishmash i think is set in his ways and refusing to see anything but his way. Its an agree to disagree thing. All i know is im alot better now then pre antivirals and its not something that can be put down to placebo. Its true that they dont fully know how the antivirals are helping but im not really concerned about that, im more concerned about getting better which is whats happening. I hope things start improving for you soon. I have my fingers crossed for you.

    good luck,
    cheers!!
    K2 for Hope, m1she11e and vli like this.
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Montoya and lerner arent saying they have isolated the cause of cfs/me but are saying they get good results with those in the specific sub groups they are treating. Lerner even has a reason for why those positive to herpes viruses and dont respond to antivirals, mostly they have other bacterial co-infections that he attempts to treat.

    You need to read more about antivirals and herpes infections as antivirals dont kill herpes viruses, but they stop them replicating thus lowering viral load. This is also the reason why many have to stay on antivirals as they virus is mostly never fully cleared from the body, but those that can keep these viruses low once off antivirals are relying on their immune system, specifically nk and cd8 cells to keep these viruses down.

    The big difference between xmrv and herpes viruses is that many have improved by treating herpes viruses and is why the issue of antivirals as kept going, because of its success. To deny the success of antivirals in a sub group of patients is showing your lack of research into the subject.

    I dont know why you refuse to believe peoples accounts of how antivirals having helped, as well as the research by doctors treating cfs patients successfully with antivirals and/or deny that you have even heard of anyone improving with antivirals. You seem to want to discourage people from possibly getting better, your reasons for this i just dont understand, maybe if it is printed in the NY times we will understand.
    K2 for Hope, SOC, Omar88 and 3 others like this.
  16. snowathlete

    snowathlete

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    And different doctors have been able to achieve similar results in different studies. Not just one study. It is completely different. Your right not to fall for a situation like XMRV again because there wasn't enough evidence to believe it in the first place. Go read all the studies on herpes viruses there are lots and lots of them, then go look at the many reports from patients who have benefitted from the antivirals, again there are lots and lots of them.
    The sad thing at the moment is that your negative experience of XMRV is still costing you MishMash because it continues to warp your reasoning. Things are rarely black and white either way.
    K2 for Hope and heapsreal like this.
  17. MishMash

    MishMash *****

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    VLI-
    The posters who disagree with me are honest people who really want to get better, and want to get their lives back. This is not worth continuing to argue with them. I respect their right to state their opinions.
    .
    I don't know about the specifics of uncvr's condition. I definitely would not call him a liar. I do know that over the course of eight months, I have many days where I am so sick I can't even get out of bed. I also have times when I feel relatively well, and and go out and function normally.

    So "recovery" is a very wide open question. If you gave me chicken soup for a year, there will be at least a few weeks where I will think "It's working!!". This is especially the case if you have a mild case.

    I actually have no personal objection to any member of this forum trying any treatment. In fact, it is none of my business which drugs or treatments another person tries. The only reason I responded to your post was because you stated you had wasted money on Ampligen, and your were possibly facing some family problems as a result.

    My response was only in that context. If you had said "I'm a millionaire's daughter from Hong Kong, and I can afford anything, what would you suggest?" I wouldn't have posted a response.

    To me, there is very slim evidence that Valcyte helps people with ME/CFS. It was not designed for our patients. It was designed for people who have diseases like HIV/AIDs and they compromised immune systems that allow herpes virus infections to take off in their bodies.

    The idea that killing the EBV or HHV-6 to treat ME has absolutely no evidence to back it. And the evidence coming from Dr. Montoya's experiments confirms my suspicions. It does not work. The door is closed, as far as I am concerned. I never saw any evidence backing Ampligen, and I don't see an evidence backing Valcyte.

    However, the final decision is yours. If you decide to take (and pay for) Valcyte, I completely respect your decision. If you do decide to take Valcyte, would you mind coming back to the PR forum and tell us what your experiences were?

    For example, did you get a result? Were you improved 20%, 40%, 60%, etc. Also how long did the effects last for? Months, years, forever? And I would be interested in how much you spent, including all parts of the treatment?
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    The idea that killing the EBV or HHV-6 to treat ME has absolutely no evidence to back it. And the evidence coming from Dr. Montoya's experiments confirms my suspicions. It does not work. The door is closed, as far as I am concerned. I never saw any evidence backing Ampligen, and I don't see an evidence backing Valcyte.

    The above statement proves you choose not to read what we are trying to tell you about your point of view.
    Like talking to a brick wall.
  19. MishMash

    MishMash *****

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    I refer you to the other thread on this very same topic. The results from Montoya study keep getting delayed. Enough already.
  20. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    i think the difficulty they are finding is a laboratory measurment of improvement which is why they are looking back through data. I think they have to do this as people dont believe someone when they just say they feel better, its hard to measure. Viral titres can go up in people who improve on antivirals, titres arent a good measure of the virus but a measure of the immune systems response the the virus. so high titres could mean your immune system is now responding better.

    Antivirals dont kill viruses, if they could that would be great and viral titres would go down as then the immune system doesnt need to mount a response to the pathogen as its not there. Antivirals only stop viruses replicating.

    The bond uni study on nk dysfunction showed nk function is low in cfs/me but the level of nk dysfunction doesnt seem to correlate with level of severity. ie the lower the nk dysfunction the worse the person is doesnt correlate. This seems to be the same with viral titres for some reason??

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