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Please Help: Antivirals or Ampligen?

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Riley, Jan 4, 2011.

  1. Riley

    Riley

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    Hello everyone. Ive been lurking on this board for a really long time, but now my situation has become desperate, and Im hoping to get some advice. Im a 25 year old male with CFS for four years. For the first two years, it really seemed more like fibro with extreme muscle pain and tightness as well as mild anxiety and a wired/ADD feeling. Then I began getting really sick over and over again, and each time I recovered, I was significantly less functional. For the past year, things have gone really downhill, and I now have severe CFS. I have been 90 percent housebound for the past year, but I have been able to generally get around the house OK and surf the internet or watch TV for most of the day without too much trouble.

    However, in the past few weeks, things have gotten much, much worse. My formerly mild POTS has become so severe that I find it hard to move, and I a constantly feel like Im suffocating. Furthermore, Im having extreme anxiety and cognitive impairment. I dont really know how to explain it, but I feel very out of it and almost disconnected from reality. The constant sore throat that was previously just a nuisance is now incredibly painful. Im most alarmed because up until very recently, I have felt like myself and mentally solid, but now that seems to be slipping away.

    I didnt want to take up too much space detailing my history, but hopefully this gives you some idea of where Im coming from.

    Im looking for advice on what treatment to pursue. Financially I think I could swing just about anything that is available at this point. It seems to me that my choices are either valcyte plus possibly nexavir and/or GcMAF or moving to North Carolina and enrolling in the Ampligen 511 program with Dr. Lapp.

    My concern with antivirals is that I could get a lot worse on them and in the end not experience any improvement. Frankly, I cannot bear the idea of getting any worse than I have been the past few weeks.

    My concern with the Ampligen trial is having to move across the country and live on my own in virtual isolation while getting the treatment. Especially given the recent level of physical and mental disability I have experienced. However this option does seem to offer me the best chance at the most recovery, and I feel that I could bear any hardship if I improved in the end.

    How would you approach my situation? Do you think its worth it to try the antivirals for a year or should I just cut to the chase, suck it up and move to Charlotte? At this point, I feel like my life is on the line.
  2. alice1

    alice1 Senior Member

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    Riley I'm sorry to hear how poorly you're feeling.When I flare up my anxiety hits the roof as well.
    Are you seeing a doc where you live and are they willing to give you antivirals.If you were to go and do the Ampligen trial you'd meet others with the same problems and not feel so alone.When does the Ampligen trial start?
  3. LaurelW

    LaurelW Senior Member

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    Dr. Bateman is also thinking of starting up Ampligen in the next little while. You'd have to move to Utah for that. Where do you live? Do you have any health insurance that might pay for the antiretrovirals?
  4. SpecialK82

    SpecialK82 Senior Member

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    i believe there may also be ampligen studies that will be starting around the New York/New Jersey area if that is close to you. If so, you can call hemispherx and ask them about it. You have a tough decision to make and there are no clear answers, please let us know what you choose.
  5. 3CFIDS@ourhouse

    3CFIDS@ourhouse still me

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    Riley, I'm so sorry your situation has deteriorated! It is a desperate feeling and hard to make major decisions when you feel so awful and have trouble thinking clearly. Have you read any of the posts by Cindy Willis or about Dr. Sharp in Texas? She has had such improvement-it might be worth checking out. You are within that important time period where recovery is much more likely. Hang in there!
  6. lancelot

    lancelot Senior Member

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    do you three have XMRV or another pathogen?
  7. SOC

    SOC Moderator and Senior Member

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    My progression pattern was similar, although not identical, to yours. My daughter's was, too. We were found to have active HHV-6 infections when we had reached our worst point. Valcyte has given us both a lot of improvement, particularly in the cognitive area. That disconnected feeling is very familiar. Valcyte was the only thing that touched that.

    My daughter has had NO adverse reactions to Valcyte in a year (at 1350mg). She saw improvement within 6 weeks, and has had a slow, but steady improvement since.

    I had a small improvement in the first 8 weeks or so, then didn't see much for a while. I had a rough patch after about 5 months on Valcyte, but it was better than my worse times with ME/CFS, so I don't see it as a major problem. After that I started improving rapidly.

    Given some of similarities in our symptoms and progression, you might want to consider trying Valcyte for 6-8 months to see if it seems to be helping before you pick up and move across country for Ampligen.

    I'm not claiming Valcyte is a cure, and we're certainly not 100%, but it's a huge quality of life improvement. My daughter is doing well at university studying engineering and can exercise lightly -- gentle swimming and tennis (not aerobic). That's a big change from a year ago.
  8. Riley

    Riley

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    Thanks so much for all of the responses and kind words. First off I'm in Louisiana so I feel that Charlotte would be the best fit for me of the choices available if I go the Ampligen route. Also to be clear I'm considering taking an antiviral (probably valcyte) not anti-retrovirals. My insurance would cover most of an antiviral medication, but I only have about ten months until I turn 26 and get kicked off of my Dad's insurance. However there would be the expense of the doctor's visits plus the cost of nexavir or GcMAF. That's neither here nor there as financial concerns are not at the top of my list.

    I have read Cindy's posts about Dr. Sharp, and he is relatively near to me, but I don't know...her experience while amazing sounds atypical, and I don't know how confident I am extrapolating her results to myself.

    It is a difficult decision with no clear answers. I'm just terrified of trying something that doesn't work out and ending up bedbound, poor, and uninsured in a year!
  9. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Hi Riley,

    Thanks for coming out of the shadows and posting. It is a good move and I think you will be glad to be "visible" here. First, as someone else mentioned, you might want to give your location--the easiest way is to put your city or region in your profile so it appears under your name when you post. Then we'd have a better idea of the geographics involved in any suggestions we make.

    There is another possibility too: get an appointment with one of the top ME/CFS clinicians who is familiar with all the treatment options and who could match your history and tests with the best possibilities.

    Do you know if you are XMRV positive? At this point, this could help with your decision. Ampligen significantly helps patients who have a particular profile. I can't remember it, cause I don't match it, but Dr. Peterson seems to be able to predict who will respond and who won't. You'll find the profile here if you use the advanced search option.

    Also, those who get significantly better on Ampligen often relapse after a year or more and it is big $$$.

    It is true that most of the ME/CFS specialists in the US have long waiting list. For this and other reasons, I am flying to Brussels to see Dr. Kenny De Meirleir who has specialized in ME/CFS for years and is now specifically treating XMRV with GcMAF and Nexavir. He also has prescribed Ampligen in the past and plans to again when he can get hold of it. He is probably as effective a clinician as any in the US and his waiting list isn't so long. After seeing you and prescribing tests, he will treat long distance.

    It is a tough decision and a lot of research, weighing options and following your gut is necessary to make a decision.

    Very best wishes,
    Sushi
  10. SOC

    SOC Moderator and Senior Member

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    BTW -- We see Dr Lerner in Detroit. It was only 4-6 weeks from first call to first appt, which was amazingly fast for an ME/CFS specialist.
  11. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    why not try famvir, many have had some success with it who had hhv6, cmv and ebv plus its alot less toxic and alot cheaper and may get u functioning without the need for the other options, also if u get some improvement it amy be an indication that valcyte will work for u.

    cheers!!!
  12. m1she11e

    m1she11e Senior Member

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    I agree on the Famvir. I was so sick and I can relate to not being sure if you can taking getting sicker on Valcyte mentally or physically!!! The Valcyte decision was driving my anxiety through the roof. Famvir is not supposed to work on HHV6 but it has brought my titers way down and I didnt experience any of the "getting worse" like most experience on Valcyte.

    Since it appears finances arent a huge concern of yours, I wonder if Famvir and Ampligen would be the way to go. Maybe a few months of Famvir would pull you out of your current low point so that you could handle the move to NC. I was in your situation but finances were an issue. I didnt think I would get any better and really felt like I would actually die. If I had the money I would have done anything and moved anywhere so I know the state of urgency you are in. It did lift for me. Im not well by any means but I know what that bed/couch bound feels like and it is not a good place to be.

    Good luck on your decision and hang in there!!!
  13. Riley

    Riley

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    I've decided to try valcyte for now. I don't think my family is prepared for me to take the ampligen route at this time. I may see Dr. Sharp at some point in hopes of trying nexavir and GcMAF as well.
  14. alice1

    alice1 Senior Member

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    Good luck with it Riley.
  15. SOC

    SOC Moderator and Senior Member

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    FWIW, Riley, we had improvement with no (for my daughter) or tolerable,if annoying (for me) side effects with Valcyte with the following dosing --
    Build up to 1350mg (900mg AM, 450mg PM; with food) over 3days, then maintain at 1350mg.

    Some doctors started with high induction doses, but I think it has been found to be much too hard on ME/CFS patients. I think some of Dr Montoya's research involved high induction doses, so you might want to do some reading there if your doc wants to try that. :)

    Don't get discouraged if you don't see rapid response. Valcyte only stops viral replication; it doesn't kill infected cells. Infected cells take time to die off.

    Good luck!
  16. August59

    August59 Daughters High School Graduation

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    Hi M1she11e - Haven't seen you here in awhile? I was wondering how you were doing. Back to the subject somewhat - Was your EBV titers elevated as well? How did they do on Famvir?

    Riley - If you decide to move to Charlotte let me know and I'll help anyway I can. I used to go to Dr. Lapp / Dr. Black and i only live about 15 miles from their office
  17. August59

    August59 Daughters High School Graduation

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    Riley - Have you had any labs run to see which viruses might be showing up? Most of the antivirals are somewhat targeted to certain viruses and that would certainly help with your choice of which one to take.
  18. m1she11e

    m1she11e Senior Member

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    Hi August- I am doing much better than I was about a year and a half ago when I was either on here or in bed spinning :-(
    I got REALLY sick shortly after moving to a beautiful new condo about a year and a half ago. When I moved out, to a different place that was not brand new I started feeling SO MUCH better within 2 weeks. Im still a long ways from where I was before I fell so sick (about a year and a half-ish ago) but thankful to have pulled out of the couch bound hell I was in. I really believe it was the new building. I didnt think about it until I got so sick and realized all the chemicals in a brand new building.

    Im now working part time and rarely have a day I cant leave the house. I still spend way to much time "resting" but am so thankful to have pulled out of that hell I was in. SO, Im much better and THANKS FOR ASKING!!
  19. alice1

    alice1 Senior Member

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    m1shelle you've come a long way.Congratulations.
    I'm starting Famvir tomorrow and from what I've read you've all given me a lot of encouragement.
    Thanks for sharing.
  20. dsdmom

    dsdmom Senior Member

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    alice - did klimas prescribe famvir or is this from another doctor?

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