Why Ampligen doesn't help everyone

Discussion in 'Fibromyalgia Main Forum' started by vicki007, Mar 11, 2009.

  1. vicki007

    vicki007 Member

    Last edited: Jan 22, 2016
  2. acer2000

    acer2000 New Member

    Hi Vicki,

    Thanks for posting your experience. I had a couple questions that I wonder if you can answer.

    1) What were the criteria they used to tell if you were eligible for the Ampligen? ie was it some lab markers such as NK cell function, cytokines, RNASE, or was it just "you have fatigue - you can get it"? Did you have low NK cell function/number and high RNASE?

    2) How did they decide you did or didn't have HHV6? Antibody tests? PCR tests? Spinal fluid? etc..

    3) Of the patients who went on to respond to the drug from your site, how long had they been sick? How long did they take the drug? And were they able to discontinue taking it? (Even if they had to go back on it at some later time)

    4) At what point did you get diagnosed with Lyme? And by what test(s)? Did you respond to Lyme treatment (antibiotics), after you took the Ampligen?

    5) Was there anything different about your labs than than the people who responded that would have made you beleive you might be different going in? (besides the HHV6) ie did you have normal NK cell function, etc... ? How did your illness start?

    thanks again for posting your experience, I hope you are able to get effective treatment now that you aren't taking the ampligen anymore

  3. spacee

    spacee Member

    Quite interesting...Very different story from what the CFIDs Journal back then printed in articles. AND, I am NOT saying you are wrong. Maybe the other made better reading. I don't know.

    I happened to have dinner with one of the owners (maybe the only one at the time or one of three) of Amligen. He led me to believe that it was the sickest who had taken it and when it was withdrawn they demanded the FDA to make it available to them in such a fierce way that the FDA put it on the "back burner" indefinitely and that is why it was taken to Belgium. It was studied in Belgium when I had dinner with this man. He was from Miami. I know he must have sold or reorganized to the name of HemispherX. He was in his 70's back then, so not sure if he is still living.

    There are about 4 or so people listed on the NCF Memorial page as being early Ampligen users that have died. At least 2 of breast cancer which she got shortly after starting Ampligen and, I think, the other was lymphoma. Not sure. And I should check these things before I post...I know. If I have the energy, I will go over it and amend this post.

    This is a different topic but I was not happy to read that Craig Maulin who started the thread on Ampligen wrote an article stating that the NIH should put CFS under "Women's Illnesses". There are 8 MD's and DOs on the Memorial List who are men. He seems to have a clear opinion of what HE wants done and I don't agree with it.

    Thanks for posting. I am really not trying to be against you. I am very interested in anyone's experience with Ampligen. I used to know of some patients who would drive up to the C. Clinic from Orlando, stopping at the shopping places along the way. That sounds like some of the people in the study with you!


  4. ladybugmandy

    ladybugmandy Member

    what the heck???

    i thought they allowed mainly very sick people into the trials? didn't they test for RNase L and LMW RNase L??? isnt ampligen also affective against EBV and other viruses (i'm sure it is!)

    this is nuts!

    if this is how the trials are run, it's no wonder it's taken so long for them to get approval.

    i am floored.
  5. acer2000

    acer2000 New Member

    Thanks vicki for reading my questions. I anxiously await your answers!

  6. bigmama2

    bigmama2 New Member

    dont worry about that. lots of people like to read and learn but dont always post. i am sure they appreciate hearing your story. i do. thanks for posting it. very interesting.

    best of luck to you
  7. spacee

    spacee Member

    Thanks for your posting. This board has been a lot slower to me since the new format was installed. Guessing, maybe some people read without signing in (and you can't post then) OR have gone somewhere else.

    It just isn't the same, sadly.

  8. mezombie

    mezombie Member

    Correct me if I'm wrong, Vicki, but wasn't there a double-blind clinical trial first?

    And weren't you one of the people who was part of the following open-label study, meaning you paid for the drug, and information was collected, but there wasn't a placebo control?

    I just wanted to get this straight in my head.

    I was under the impression that there was a significant difference between the outcome of patients given the placebo vs. Ampligen in the clinical trial, but my memory is foggy. I do know of people who did badly as well as some who did well on the drug, but I can't remember which of those were in the original placebo-controlled trial.

    I was one of those desperate people back in 1991 who wanted to try Ampligen. I even wrote a hand-written letter (and I was so sick that even this was very hard to do) to the company. I actually received a letter form the chairman of the board, letting me know I could have the drug (at my cost) if I could convince my doctor to do the data collection. My doctor demurred, citing that he, not the company, would have to bear the cost of the blood draws, etc.

    I never did understand how Ampligen was available as long as patients were able to pay for it. I mean, the FDA still has not said it is "safe and effective".

    Could anyone meeting the Fukuda criteria for CFS get Ampligen? If so, no wonder all the different results!

    It's bizarre that the drug can affect people so differently. I'd hoped maybe someone like Peterson had, by now, a better idea of who would and who would not respond well to it.

    Oh well.

    Thank you, Vicki, for shedding a bit more light on this issue.
    [This Message was Edited on 03/12/2009]
  9. TeaBisqit

    TeaBisqit Member

    Thank you for all the info. I've always been curious about this drug.

    I don't think anyone who is just tired should ever be categorized as having our illness. There are a million reasons someone is just tired. I consider this disease to be a syndrome of symptoms and if you really listen to us, you see we all have the same thing. I think doctors are guilty of giving the CFS diagnosis to too many people who aren't sick with true CFIDS, immune dysfunction. If you walk into a doc's office and say you're tired, they just throw CFS at you. And you might really have a million other things, parasites, Lyme, thyroid, a heart problem, anything. But they don't look very far to find it for you.

    Eighteen years ago, i would have tried Ampligen. I was bedridden for the first two years of this disease. I had a psychic feeling that drug would have helped me then. But all these years later, I would rather wait and see what's going on with it. However, I feel it should have been approved years ago and it should have been our choice to try it. I don't feel it should have been held up all these years.
  10. SpecialK82

    SpecialK82 New Member

    Hi Vicki,

    Thanks so much for posting about your experience. I'm sorry to hear that you did not improve and your side-effects sounds terrible. Can you tell me how long you took Ampligen, and how long did you have the increased pain and fatigue?

    I agree that we all are different with this diagnosis, and we could have different underlying infections, etc. I hope that you are able to find help for the Lyme.

    If I remember correctly, I beleive someone had posted that Ampligen was changed at some point during the trials and it was made less toxic? Does that sound right? If so, do you know if you had the first more toxic version or the re-fomulated version? (Someone please correct me if I am wrong).

    Thanks for taking the energy to post on this Vicki - best of luck to you.

    [This Message was Edited on 03/13/2009]
  11. spacee

    spacee Member

    What year/years were you on the Ampligen?

    I have a sis in law who was given the diagnosis FM/CFS. She could play tennis (but only three sets).

    Within 10 years she has Lupus. Dr. Bell states that in his 25 years of seeing CFS patients he has never seen someone go to typical Lupus...sometimes "atypical" but never goes to the kidneys.

    I agree way too much confusion with the term. The long thread currently on this board says CFS but I think it should read "toxic mold". But that is just my opinion cause it gets more confusing. I do think toxic mold should be address here but just labeled toxic mold.

    I mean if you had titled yours CFS treatment, we would have to clearly very different threads going with CFS as the title.

  12. spacee

    spacee Member

    Interested in what year, how many months you were on Ampligen...if you don't mind.

  13. ladybugmandy

    ladybugmandy Member

    hi spacee!!

    i was wondering if you might have a chance to ask dr. bell how often he sees people with long-term CFS develop MS?

    i heard that some of peterson's "most severe cases go on to develop MS"..and i have been having some troublesome nerve symptoms lately......ugh.

    thank you
  14. spacee

    spacee Member

    I have an email friend in New York and I will ask her if she can ask him. I am not in direct contact with him.

    I remember back in 1991 at the Cheney Clinic, (I went because I felt I was going to lose my ability to walk) I was struck by the people with canes and walkers. And at the Ft. Lauderdale conf, the number with scooters was impressive. They might have been using them to conserve energy.

    Through Kutapressin (no longer sold) and Transfer Factors, I have kept my ability to walk. It is my brain that I am very concerned about now. And needing ritalin to be able to stay awake long enough to get dressed and leave the house.

    I will post a thread to you if I can find out.

  15. ladybugmandy

    ladybugmandy Member

    thank you spacee! may i ask if you have ever tried antivirals? valcyte has helped my brain fog somewhat.

  16. spacee

    spacee Member

    I have only tried the earlier ones which did nothing for me. Acyclovir and Famvir.

    I rather doubt my doc would rx it but I will learn more and see. Sometimes he cooperates if I can take something in to show him.

    I have been diagnosed with sjogren's syndrome. Which usually affects the eyes and mouth but can affect any organ Sometimes I wonder if it is affecting my brain. The doctors here don't seem to understand it other than eyes and mouth.

    So, I have made a note of it and will google it and CFS later.

    Thanks! I will try to contact Dr. Bell's office myself. I was able to ask him a question after he spoke at one of the conferences, for a friend, and he is very generous with sharing his knowledge. Will see.

  17. ladybugmandy

    ladybugmandy Member

    isnt sjorgens also tirggered by EBV?

    i wonder if you can take montoya's earlier valcyte publication in to your doctor...as well as lerner's stuff....

    best of luck
  18. spacee

    spacee Member

    I had never heard that about sjogren's but it is possible. I have had a mildly positive ANA since the late 1980's. It was routinely tested for about 10 years then forgotten. I requested my pcp to retest and he about flipped out. The test came back with positive sjogren's antibodies. Yet when I saw an Rheumy he said he thought I did not have sjogren's but that I have mild Lupus.
    I don't really trust his judgement call.

    I had forgotten that valcyte was the Stanford antiviral. There is no way my pcp would rx it. He has been very cooperative in some ways but others he draws the line. There is a doc about a hour away who rx's it but at this point I am not well enough to drive there. I can take the ritalin and have a good afternoon and evening. I feel though that I have spiraled down the past 1.5 years so what would the next 1.5 years bring? Not a good thought.

    My pcp thinks too much ritalin could send me into arrythemia (?). At this point I want quality of life not length...so it if happens..it happens. I noted on the memorial board that a large number of deaths was from arrthymia . (I keep guessing on how to spell it..haha).

    Hope this isn't a downer for you. I have been sick 23 years and have lived much longer, with better quality of health then I was expected too.

    This is such a weird illness that only we who have it understand.

  19. ladybugmandy

    ladybugmandy Member

    {{{{{{{{{{{{spacee}}}}}}}}}}}} (cyber hug)
  20. spacee

    spacee Member

    Thanks for the hug! I needed it today. I took my ritalin and still could not be awake enough to go to the post office. I think my weeks are flip floping. I used to have good Mondays and bad Thursdays and I think it has flipped. That is one thing about this DD it is forever changing.

    I emailed my friend who was a patient of Dr. Bells. She already knows his opinion of CFS and MS. And is looking through his info to find it. ALSO, she has a friend who was a patient of Dr. Bells and she felt like she was going into MS. He said that he did not believe that was the case. I guess it was awhile back but Dr. Bell was correct, she did not go into MS.

    Look forward to being able to give you the info!

    I guess we took over this thread. I really wanted to know when Vick took the Ampligen. But I don't know if she is coming back. Sorry Vick!!

    Thanks for the Hug....