CFS: TO ALL who have improved on antivirals

Discussion in 'Fibromyalgia Main Forum' started by ladybugmandy, Feb 2, 2009.

  1. ladybugmandy

    ladybugmandy Member

    hello! i am desperate to find anyone who has been on long-term antiviral therapy for CFS, particularly those who went untreated for a many years.

    i have been on antivirals for almost 2 years and i thought i was improving twice but rapdily delined again.

    i want to know if this up-and-down thing has happened to anyone else.

    does it mean the drugs arent working or does it just mean i have to wait longer?

    i once emailed a woman who had been on antiviral therapy for 4 years and had improved somewhat. i no longer have her email address and cannot find her post anywhere ( i have been looking all day. it is on another board ).

    any help would be appreciated.

    thank you

    ps..hope you don't mind if i keep bumping this post.
  2. kat0465

    kat0465 New Member

    Grammy, what the heck is a salt lamp??and did you have a pos test for lyme?? i have never been tested but will be asking doc about it the next time i see her. and if i do test pos is there anything natural to take to get rid of it besides the anti viral & antibiotics?? i too have been sick now for almost 20 years :( thats half my life. it sux!
    {{Hugs}} Kat
  3. ladybugmandy

    ladybugmandy Member

    thank you for your detailed post and i am so happy that you are somewhat better.

    i know that a multi-faceted approach with armour thyroid, cortisol, etc is supposed to help but i just cannot afford a new doc and all those supplements so i stay with lerner for the time being.

    i would really like to try low dose naltrexone but lerner wont do it. it would really help to be a little more functional day-to-day even if it IS a bandaid.

    i am not at all trying to encourage you to go back on antiviral therapy but since you have been sick a long time, 6 months would not nearly be enough. maybe when you feel up to it, you could give it another shot.....

    thanks again
  4. waltz

    waltz New Member

    I asked Dr. Montoya a few months ago, among his patients who had improved to near normal functioning, what was the longest amount of time it took. He said that was a good question. He said 9-10 months. Though it's possible that that could change with more data.

    This is my opinion. Whatever treatment isn't working, even though it may have worked for others, maybe means that what is impeding your recovery is a different bottleneck. Maybe some people can do with only antivirals to stop the cycle of viral activation. Maybe other people need nutritional supplements to get the body to prevent activation of viruses.

    Maybe you have already tried all sorts of supplements, maybe not. If not, maybe worth trying. I think Dr. Cheney's interviews are very informative and so far I think among those I have read, synthesizes a much bigger picture than the just give antivirals approach.
  5. ladybugmandy

    ladybugmandy Member

    waltz..thanks for the post! i think we have to keep in mind that dr. montoya has been in the game for only a couple of years (as far as i know), whereas dr. lerner has been at it for over 20 years.

    also, dr. lerner often uses both valtrex AND valcyte at the same time (if you have EBV and CMV/HHV6). i used to think that valtrex might be unnecessary but my RNase L went down only after the addition of valtrex and not with valcyte alone. this might mean something.

    reading some posts from lerner patients, it seems that if you have had the disease for a very long time, it can take 4 - 6 years or more of antivirals.

    i know there are a few people who have recovered quickly - michael manson for example - but i am thinking that this is a rare exception.

    i hope it might still work for me.....


  6. emmally

    emmally New Member

    I am improving slowly but surely...I am going on 9 months of valcyte. I know you were sick longer than me. I think that you need to trust that it is going to work slowly but surely. Honestly, and this could be the one and only phsycological thing I think is hindering my recovery is that when I start to freak out about why is it taking so long and why isn't it working like it has on someother people.....I find myself feeling way way way worse. I could honestly wake up feeling like a 5 out of 10, than start to freak out about the treatment and get myself all worked up, and than feel like a 2 out of 10 for hours. I know it is easier said than done but you just have to sit back, relax, and ride it out...even if it takes a long time.....The more relaxed and the less I think of the whole antiviral treatment process "as a whole", the less anxiety and stress I have and the better I feel....
  7. maps1

    maps1 Member

    I reached the point at xmas where i felt my body was shutting down and decided to start seeing a naturapathic doctor. I am definately seeing some improvements and have posted on this in the hopes of finding someone else taking the same path that i could talk. I find it difficult and often depressing not knowing if this is the right direction or not so i understand how you are feeling.

    I am sorry you are having such a rough time. There used to be a valcyte board somewhere where people were posting their progress, maybe on yahoo, perhaps that's where you talked to someone.

    I really hope that you can find someone cause it get's pretty lonely.

  8. ladybugmandy

    ladybugmandy Member

    thank you for the post. i am so glad to hear you have found even a little relief.

    today has been utter hell for me, i dont know how else to describe it. its as if i had never started treatment at all. i just dont know what to make of it. i just lay there like a zombie in pain and fog.

    i am too scared and poor to leave dr. lerner in favor of someone new who might try other things with the antivirals. just have no money and no energy.

    still hoping against hope the antivirals will work one day....but at this stage i do not think i should be having weeks that are this bad. there is no explanation for it unless i have another pathogen which no one can find...


  9. waltz

    waltz New Member

    You mentioned that your RNase L went down only after the addition of Valtrex. I am wondering, did your EBV, CMV, HHV-6 antibody titers go down with Valcyte or not until Valtrex? I haven't been tested for RNase L and am wondering if it is correlated to the herpes antibody titers or not.
  10. ladybugmandy

    ladybugmandy Member

    waltz...i am not sure what conclusions to draw about RNase L because many docs dont really believe it means anything. it has not correlated with antibody drop for me, BUT i never really had high antibodies to begin with. that was a major problem with people trying to figure out which medicine i needed.

    even though i got sick with EBV, my EBV antibodies are barely elevated. my HHV6 antibodies are borderline and i have never been exposed to CMV.

    however, my RNase L was VERY high and in a DVD of a 2006 presentation by DeMeirleir, an RNase L as high as mine "almost always means active virus" he i put 2 and 2 together and decided it had to be a herpes virus at play.

    my antibodies remain low/borderline and i am still sick even though my RNase L has dropped dramatically so i cannot really make any conclusions about any correlation. also, montoya found no correlation between RNase L activity and clinical improvement in his soon-to-be-published study (he probably didnt find any correlation between RNase L and antibody drop either, but i cannot be sure about this)

    some other factors to consider: low molecular weight RNase L could be a culprit (i have LOADS of it).....also, the director of RedLabs told me that once RNase L activity is within normal levels, it could take up to a year to notice improvement.....

    sorry i could not be of more help...

  11. SpecialK82

    SpecialK82 New Member

    Hi Sue :)

    I too would like to see how many people have improved with antivirals. I am in a holding pattern right now, trying to figure out what I am going to do since the Valtrex made me feel so sick. I am getting worse everyday and feel that I have very limited energy to travel to doctors.

    I've read alot about Dr. Cheney's theories lately and they make alot of sense. I think we have so much going on that probably just treating the virus isn't really treating the problem. Maybe the virus reactivation is just a symptom of a larger issue, for example immune dysfunction as Cheney suggests.

    So I feel very discouraged at the moment and not sure what to try next. I called Cheney's Clinic today and he charges $7000 - $9000 for the first two-day visit. And then he charges $600 an hour after that, and of course insurance is not accepted. I am shocked that he could charge us that much knowing how desperate we are :(

    I'm going to watch the thread and hope for stories of improvement with AV's.


  12. ladybugmandy

    ladybugmandy Member

    hi kristina:)

    wow cheney charges THAT much??? thats insane! (although if that includes all testing i guess its not that insane).

    i have been reading a few posts here and there (i've been scouring the net) and i have gathered that it can take years with antivirals if you have been sick a long time. also, one woman said she also goes up and down but ultimately is improving somewhat.

    even though i wish dr. lerner would give me something to make me feel better day-today and not do ONLY antivirals, i still think he might be our best bet. he just has so much experience....but just my opinion....

    things will look different later in the year, when ampligen becomes available in the US. also, maribivir will become available sometime in the near future for CMV, which is apparently a lot less toxic than valcyte. it may have anti-HHV6 activity but they are not sure yet. there is also artesunate, the anti-malarial with strong HHV6 activity, which is available in europe.

    i hope you feel better soon...hang in there!!!

    [This Message was Edited on 02/04/2009]
  13. Smurfette17

    Smurfette17 New Member

    Hi Sue,

    I understand how easy it is to be discouraged with the slowness of the antiviral approach. Believe me, I do.

    I have been sick for about 1 year, and started antivirals about 3 months ago. First my EBV was positive, but not very high, so I took Valtrex then Famvir. My EBV has now been negative for a while, but I feel worse than ever. When I went in to see Lerner I was a 3.5. Now I am at a 2. I told him this and he said it's easy to get discouraged when you feel worse than when you started (but offered me no explanation as to why). I'm still on Famvir he said "to make sure the EBV doesn't start replicating again".

    Then, now my HHV-6 is positive-- but like you, borderline. So I'm supposed to start Valcyte next week. I'm scared of what the Valcyte will do (as far as making me feel worse) but I feel I have to give it a shot.

    Since I started antivirals about 9 months into my CFS, he said my prognosis is good. But you know, I am SO TIRED of hearing him and my local doctor keep telling me I will get better. I know they mean to be encouraging but sometimes it is so hard to live in my body, I just feel like stopping all treatments. Especially since I feel worse now than before...

    On top of it all, I now caught a nasty stomach bug of some sort and feel like crap. I feel that CFS should make us immune from any other illnesses, since this illness is bad enough. Wishful thinking.

  14. Lichu3

    Lichu3 New Member

    Certain anecdotes I've heard have indicated that the level of active drug in your body probably has a bearing on whether the antiviral might work -- aside from issues like whether the bug target is correct, whether your CFS is really virally-related etc.

    Both valtrex and valcyte have to be absorbed from the gut and then processed by certain liver enzymes into their ACTIVE forms. It is not unexpected that people will vary in how much they absorb, what certain enzymes they have, and how active those enzymes are.

    This is true not just of CFS and antivirals but many other illnesses. It accounts for why some people respond to a certain blood pressure/ cancer drug/ etc. while others do not.

    So a reason why people may not be responding is that there is not enough active drug in their bodies to kill/ suppress virus. Many questions abound such as what level of drug is necessary, whether it is possible to achieve level with minimal toxicity, etc. I know it's hard to be patient but I am not surprised that results have not been uniform.

  15. 28years

    28years New Member

    I’ve have severe and progressive CFS for 29 years (housebound –2 on Dr. Lerner’s scale).

    I saw Dr. Lerner last year and he gave me an evaluation and a protocol for my doctor to follow with me. I’ve been on one gram of Valtrex for times a day for six months and I have had the following improvements:

    – I’m able to feel my legs for the first time in over a year
    – while I still have difficulty thinking, I rarely become confused anymore
    – I used to use my scooter all the time in the house, now I find myself walking rather than using the scooter about 40 % of the time
    – for the first time in 10 years I have regained the reflex (that might not be the right word but I don’t know what else to use) that makes you automatically jerk your hand away from a hot stove (before regaining this reflex, I would burn myself frequently and only notice when I smelled my flesh burning, now for two months my hand jerks away by itself when it hits a hot stove)
    – my toes which used the point down when I lay down (a sign of abnormal neurologic function), have just recently started to point up in the normal position
    – I find myself doing things I wouldn’t normally do
    – standing up to write a simple note instead of sitting down before doing for anything
    – typing short messages rather than using my voice-activated software
    – my family tells me I am more animated.

    I’m very encouraged by all these improvements. However, it must be noted that my energy level has not increased at all. In fact, I sleep more than I did before I started. It seems that for me my improvements have mostly been neurological. Personally, I’m very glad about that because the neurological issues were the biggest problem for me.

    This week I am due to start Valcyte in addition to the Valtrex. However I’m terrified to start it because I have developed some new problem that started before I started Valtrex. I don’t know what it is. I posted on this site and others trying to find out. Basically, I have multiple joints that seem like tendons or perhaps the ligaments are swollen and/or thickening. It is very painful. I’ve been trying to find out what it is before I start Valcyte – but I don’t think I will wait much longer. But frankly I’m not sure what to do about it.

  16. ladybugmandy

    ladybugmandy Member

    i am very appreciative of the posts i have gotten on this thread - thank you!

    lichu...yes i too am worried about the ganciclovir blood levels, especially since he is giving me a reduced dose. it is on my list of things to ask him. because i improved dramatically 5 days after re-starting the drug after having been off for 2 months, i am sure that valcyte must be doing something despite my repeatedly delcining after improving.

    28years - i have often wondered how you were. i cannot believe that you have already begun seeing some neurological improvements. that is SO encouraging. i am very very happy for you and hope you find out what is going on with your joints.

    they say that cognitive improvements are the first to come and that if they start, it means you are on the right track. bravo!


  17. Mikie

    Mikie Moderator

    I was on Famvir for 1 1/2 years, pulsing it in the last part of the treatment. I have switched to Acyclovir and keep it on hand at all times. If I feel as though some virus is reactivating, I will do one or two pulses of it. I also keep Doxycycline on hand in case the mycoplasma tries to return.

    As you know, my regimen was quite comprehensive as I was trying to go from bedridden most of the time to now being able to work part time. My doc and I added Heparin injections and transfer factors and, I believe, these two things helped me the most. Heparin is no longer available and the Lovenox injections are very expensive. I am using Nattokinase to try to keep the fibrin overgrowth under control in my blood. The pathogens can hide out in the fibrin/platelet clumps.

    It took 1 1/2 years on the Famvir to beat back the stealth virus(es) and 2 1/2 years to get the mycoplasma infection under control. Mycoplasmas and Herpes-Family viruses never really go away and can reactivate when we get run down. It is ongoing vigilance to maintain control.

    Good luck to you.

    Love, Mikie
  18. quilp

    quilp New Member

    So I feel very discouraged at the moment and not sure what to try next. I called Cheney's Clinic today and he charges $7000 - $9000 for the first two-day visit. And then he charges $600 an hour after that, and of course insurance is not accepted. I am shocked that he could charge us that much knowing how desperate we are :(

    I'm going to watch the thread and hope for stories of improvement with AV's.


    Hello Kristina, if these figures are correct I can only say I find them morally repugnant. I also find it difficult to reconcile the possibility of my being cured at this clinic ( or at least well enough to negate the necessity of any future visits ) whilst the clinic is able to indulge in such financial delights.

    Kind regards Mark
  19. znewby

    znewby Member

    You say it took 2 1/2 years to get the mycoplasma under control. Did you need to be on antibiotics that whole time? Were doctors ok with that? May I ask if you got sick for long on those antibiotics to recover? It appears my daughter has mycoplasma. Her doctor who had never heard of this mycoplasma and I guess rarely tests for them gave her 5 days of antibiotics. I knew that wouldn't be long enough. Perhaps she has had this issue for as long as she's been urinating frequently which would be many years. The five days she took it she was very sick - I'm not sure if she has an allergy or it is a reaction to the antibiotic. Thank you Mikie.
  20. ladybugmandy

    ladybugmandy Member

    znewby...i think she would have to take it for a long long time! if she got sick on the antibiotics, that could very well mean its working..."herxheimer reaction"...good luck to her!

    i wonder if a lot of people are still going to the cheney clinic because i was on the list for a long time. they started to call me last year and still continue to call every couple of months asking if i want to come in!


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