CFS: Antiviral Treatment Update

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Sep 10, 2008.

  1. ladybugmandy

    ladybugmandy Member

    hi all...

    i have been on antivirals under dr. lerner for about 6 - 7 months now and did some antiviral therapy before i saw him as well.

    i have been sick over 15 years.

    my RNase L recently showed a dramatic drop, which was great news.

    however, i am still feeling very sick. i have improved only 10 - 12%.

    i am really starting to wonder if i will ever get significantly better. dr. levine told me last year that unless you are treated within the 1st year or so, the viruses move "deep into your organs" and you cannot become well again.

    interestingly, she said i would not improve more than 10-15% no matter what i took.

    i was furious with her at the time.....but now.....i am beginning to wonder if it's too late for me afterall.

    i once spoke to a woman who was treated by dr. lerner for 6 years but was still only a little better.

    at the whittemore-peterson website, they clearly state that 80% of cases do not improve....and peterson has treated many with antivirals.

    am i just fighting for nothing?

    thank you for reading..

    ps...i do not have lyme.
    [This Message was Edited on 09/11/2008]
  2. Juloo

    Juloo Member

    I'm trying to remember what has made the most difference to me, and all I can come up with is that there was gradual improvement with many different pieces of the puzzle.

    I have not been treated by your doctor, but through the FFC and two docs prior, I had anti-viral therapy. Two months of one type made more difference (put mild-to-moderate FM into remission) than another two years of another -- although I can't say they didn't help at all.

    For the record, I had only been dealing with CFS about half the time as you at the time I started them (and the FM only about a year or so then).
  3. znewby

    znewby Member

    I've read stories of people saying they have taken antivirals for two years and they now feel well.

    Perhaps Dr. Klimas is right in that our best information is going to come from Dr. Kerr's research.

    I think there is enough research taking place on different angles of cfs that a some kind of breakthrough has to happen within the next couple of years.

    [This Message was Edited on 09/11/2008]
  4. kitteejo

    kitteejo Member


    I agree that 80% of us will not improve and that is so frustrating but I think we should never give up. Who can predict what will work and what won't and who it will work for.

    Don't give up the fight.

    I do think it's strange that so many new clinic's are popping up with supposed cures for us and all have different theory's. It's a money make for some and they don't except insurance.

    I still have my appointment with Dr. Lerner and have a small hope of improvement but if not it will help my SSDI case so what do I have to loose. He is out of net-work for me so I will have to pay a higher co-pay but I'm hopeful it will be worth it in the end.

    Don't get discouraged!

    Hugs for all the help you've given me,

  5. ladybugmandy

    ladybugmandy Member

    thanks, everyone. i appreciate your responses.

    i am in slightly better spirits this morning. i guess usually i just feel like i hit a wall in terms of my improvement, and when the fog is bad, i become very distraught again.

    i am telling myself that i must be more patient, that clinical improvement takes a very long time in someone who has had this as long as i have, and not to give up.

    still, i wonder if i am not just trying to convince myself of something that isn't a reasonable belief.

    before i read the whittemore peterson site and the fact that they say 80% do not improve, i was told by some contacts at RedLabs that peterson has very good results.

    i also read some article about peterson and how the "majority of his patients have responded" to his adminitration of cidofovir.

    so i wonder why they are now giving a 20% improvement rating.

    i am in the process of mold remediation and will eventually have the carpets replaced with wood. who knows? maybe that will help the inflammation (i am allergic to dust or dust mites i think and have always lived in heavily carpeted places).

    kelly..i want to especially thank you. your words always make me feel so much better and full of hope. i am so glad you feel you are getting better and are on the right track.

    and you are right....if the valtrex was the determining factor, i have really only been on it about 6 1/2 months now. that isn't very long.

    i will certainly keep up the fight. i think i just ran out of patience last night!

    love to everyone,

    [This Message was Edited on 09/11/2008]
  6. deliarose

    deliarose New Member

    If one's cell mediated immunity is crippled, will one really benefit from taking antivirals ?

  7. acer2000

    acer2000 New Member


    Perhaps 80 of people who are never treated don't improve? The 80% statement is unqualified, so I don't think you can read into it much. Also, its on the page for the new WPI, which is trying to get funding. So there may be some motivations there. I wouldn't put much faith in statistics. Either you will get better or you won't.

    Also, I think I remember reading that people don't start feeling better for a few months after their immune parameters shift. The fact that your RNASE went down that much shows that something is happening, so perhaps it will just take a while.
  8. ladybugmandy

    ladybugmandy Member

    you are totally right...the whittemore-peterson website was probably talking about the untreated patients when they say 80% don't recover. i don't know why i thought otherwise. i went to the site now but can't even find where i read it...

    thanks jam and everyone for taking the time to type your replies means so much. (i have read them but forget as soon as i read so it is hard to reply lol)

    hope you guys are hanging in there too.

  9. Mikie

    Mikie Moderator

    First, never believe those kinds of statistics because you have no idea where they really come from. Maybe some docs/treatments do only help 20 percent but that doesn't mean that, as individuals, there isn't hope for greater achievement. I was sick 11 years but likely have had this all my life. We know I have some kind of Herpes-Family Virus(es) but I haven't been tested to identify which ones. I took Famvir for about 1 1/2 years and was finally able to beat the infection into a latent state. Herpes-Family Viruses never go away completely. They can reactivate if we get run down or sick. It may be necessary to take the AV's for some time.

    Have you been tested for mycoplasma infection(s)? A lot of us with these illnesses have them and they require a long term treatment with antibacterial meds. I was on the Doxycycline for about 1 1/2 years before we were able to beat that infection into latency too. Mycoplasmas, like Lyme, can deposit cysts deep inside the body and they can reactivate when we get run down.

    Finally, anyone with chronic infections should get the ISAC blood panel to rule out fibrin overgrowth. Fibrin clots in the bloodstream provide hiding places for pathogens and keep the body's environment low oxygen, and environment in which many pathogens thrive. The treatment is Heparin. You can find out more at the HEMEX Lab website.

    Seven years ago, I was bedridden and on Morphine for pain (I also have FMS). I knew if I were to get better, it would be up to me. Fortunately, I found this website and all the treatments which have helped me to get to where I can work part time. My progress has been agonizingly slow and I have to look back in retrospect just to see how far I've come.

    Please don't give up. You may need to do some additional things and progress may be slow, but I'll bet you will see progress. Are you doing anything to help rebuild your own immune system? That is another important part of the whole thing. I take probiotics and undenatured whey to keep mine healthy. Good luck.

    Love, Mikie
  10. ladybugmandy

    ladybugmandy Member

    thank you for your post and i am VERY pleased to hear about your progress. that is awesome:)

    i have been tested for mycoplasma, lyme, many viruses, etc..and had the fibrin test also. everything points to herpes virus infection, i think.

    i have not, however, been tested for enterovirus.

    thank you again for giving me some hope and congratulations on being able to work!

  11. aftermath

    aftermath New Member


    How long into the doxy was it before you "beat mycoplasma."

    By beat, do you mean feeling better, or just a low IgG test?
  12. chrissy12

    chrissy12 New Member

    I sometimes feel the same way. I started with Dr. Lerner about the same time you did and I have only improved slightly. I am glad you have had some improvement, even small. Dr. Lerner will not give up on you. I believe he will stay after it until he solves your problem. The home care nurse I have says he is like a sleuth.

    It may take longer to get better because you have been sick for so long. I wish you well.... Cindy
  13. ellikers

    ellikers New Member

    "i am really starting to wonder if i will ever get significantly better. dr. levine told me last year that unless you are treated within the 1st year or so, the viruses move "deep into your organs" and you cannot become well again."

    Let this be a comfort to you:
    My close friend was sick for over 10 years, with (documented) mono and mycoplasmic infections/CFS, was wheelchair bound, and she recovered completely with anti-biotics and also anti-virals (herbs and regular meds). It took time, but she can be physically active and lead a usual life (occasionally her virus will flare, she'll take her meds and be back in to feeling well pretty quick).

    I just wanted to share that story because not everyone who has been sick a long time stays that way.
  14. ladybugmandy

    ladybugmandy Member

    bless all of you for writing. you have indeed made me feel so much better. very kindhearted people on this board:)


    ps...i have ruled out gut issues and mycoplasma. i had antibody testing as well as PCR testing at MDL, as well as gut permeability testing with one of the world's best gut experts, dr. leo mycoplasma pneumoniaie is high but not high enough to treat, according to dr. lerner.
  15. ladybugmandy

    ladybugmandy Member


    yes i have had all that tested and did a trial run of doxy a long while ago for a few months. absolutely nothing - no herx, no improvement.

  16. SpecialK82

    SpecialK82 New Member

    Hi Sue,

    I found it concerning as well about the 80% when I read this thread so I went on the Whittemore site to do a little investigating and found some good news.

    This is a quote from the site under patient resources/FAQ's:


    Yes and no. Some people do recover but recovery can be a relative term. The majority of patients live with some degree of disease. This is because we have not done enough research to learn the underlying cause and find biomarkers for subgrouping patients. The disease can be relapsing and remitting, that is people will recover and relapse sometimes years later as the symptoms are treated and not the underlying cause. 80% of patients do not get better."

    However in reading the next FAQ there is some hope:


    Not yet...but there are Immune modulating treatments and antivirals/antimicrobials that have been used successfully, if the patient is given a complete examination with tests to identify immune dysfunction and microbial infections, treatment strategies can greatly improve if not cure the patient. In addition, there are symptomatic therapies that have shown to be helpful in alleviating symptoms. With continued research, treatment and prevention strategies that treat the underlying basis of disease can be developed."

    How great is that!!

    I even got my non-brain fogged husband to read this with me and we think that the 80% refers to the whole population of CFS sufferers (treated or untreated) and that probably the 20% that do get better include a high number of the people that are addressing the immune dysfunction and infection issues.

    Having said that, I agree that it is a painfully slow process. I don't think there is a word in the English language that adequately describes this kind of patience.

    We were never asked if we wanted this challenge in our lives but I think somehow there is a purpose in all things, and one day when medical science has given us our lives back, we will look back on this he## and see the meaning to all this suffering.

    One day we will be free!!

    Love, Kristina

  17. Mikie

    Mikie Moderator

    Sue, I'm glad you have had all the tests to rule out other things. The Herpes-Family Viruses can really make people sick. I hope and pray your treatment will help you feel better soon.

    Aftermath, back in 1991, I got horribly sick with what I thought was a flu. Because the mycoplasma infection was in an active state, the antibodies showed up in my blood test. The doc never told me what strain it was. I had never heard of mycoplasmas and didn't even know there were different strains. I was put on antibiotics but not long enough. It left me crippled for months and I have never been the same.

    I am in an HMO now and they would likely never pay for the sophisticated tests. My docs and I have used the empirical appraoch. I was on Doxycycline every day until I could start pulsing it off and on without the symptoms' returning. Dr. Nicholson's approach is to take it for six weeks and try to stay off for two. It symptoms return before two weeks, one goes right back on the Doxy. After one can be off for two weeks, one keeps increasing the time off the drug until symptoms return. Eventually, when one is able to stay off the Doxy without the symptoms' returning at all, the infection is considered to have gone latent. Symptoms include fever, swollen lymph nodes, extreme fatigue, body pain, and feeling like one has the flu. Within three days of taking the Doxy, I had a big Herx reaction, so we figured right away that the Doxy was what was needed (the empirical approach).

    The Famvir was discovered by accident when I had eyelid surgery. It was prescribed as a preventive against a Herpes infection of the eye. I went into a complete, but temporary, remission. I gave my doc copies of papers dealing with AV treatment for CFIDS and he agreed it would be a good idea. The Famvir caused quite a Herx-like reaction with purging. The difference was that with a Doxy Herx, I felt burning in my torso. With the Herx-like reaction to Famvir, I experienced chilling.

    We did the Heparin after I showed my doc papers from the HEMEX Website. The dose is so low that there is little danger in trying it but we did keep a close watch on it. My doc wasn't familiar with low-molecular weight Heparin so I had to do the injections every day. What an immune reaction the Heparin caused! It was stronger than either the Doxy or Famvir. Again, that told us we were on the right path.

    The transfer factors I took, which target specific pathogens, were pretty much the final treatment in the treatment plan I proposed and my doc approved.

    Now, I am doing the Methylation Cycle Protocol but only on and off. It is also causing strong detox and purging, so I have to go slowly. My guess is that it is dealing with chelating toxins in my system.

    There is no known cause nor cure at this point. I believe I have improved because of such a comprehensive approach. Still, I'm not well and have to be careful. I rest in between working and don't let stress overwhelm me. I also don't overdo it. In addition, I keep my preventive appointments pretty much up to date so I don't have other problems to deal with. When I do, I take care of things. I've had my gallbladder removed and the meniscus repaired in my knee.

    I don't know how much more I can improve. Only time will tell. I pray for cures for our illnesses because the treatments which have helped me may not help others. It would be so nice to feel really well, in glowing good health. What I am doing is coping the best I can and very slowing improving. I tell my story because I want people to know it is never hopeless. People need to hear about those who have made progress. Progress isn't easy and it isn't fast but I'll take what I can.

    Love, Mikie
  18. ladybugmandy

    ladybugmandy Member

    thank you for sharing your story and i am so glad you are better.

    may i ask how much better you are (if you can estimate a percentage).

    also, do you have all your cognitive functions back?

    thank you!
  19. ladybugmandy

    ladybugmandy Member

    jam lol you asked dr. klimas that question!? LMAO...i have read her response to that question many times to cheer myself up!

    thank God you asked it!

  20. stschn

    stschn New Member

    Went we can do so little with our lifes what else can we do but fight. I've had cfs for almost 21 years and I'm 71 next month I'm not sure I have the time left to wait a couple of year for all the new research to come out but I will not give up and will most likely be trying to find out about this on my deathbed. Maybe if I'm luckey enough to go up instead of down when I cross over I'll find the answers there. So when you think you all alone I'll come floating through the air-- wow am I in a goofy mood today. Sorry but just don't give in or give up. With love and understanding. Joyce
    [This Message was Edited on 09/15/2008]