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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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First Cidofovir Infusion Done!

Discussion in 'Antivirals, Antibiotics and Immune Modulators' started by Ema, May 20, 2013.

  1. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    Sometimes yes, once no!

    GcMAF seems to have stabilized me enough that I'll recover from such horrors as an international trip, within a couple of weeks. Hopefully the Cidofovir will do the same for you.

    Hope a few days of real rest and relegating puppy-care to someone else will bring you back up.

    Sushi
     
  2. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    That sux. I have had a cracker of a headache for the last 6 days and worked 3 of those and 1 sick day. Today i feel like im coming out of it. I basically took lots of drugs and lay low with the occassional post on here and then back to bed. periactin an antihistamines used for migraines as well as neurontin kept me quite doppy for a few days and eased my head, sleeping pills at night definately helped. Its always abit scary when in a hole like this as we start to think will it ever end.

    Too many of a crashing lately. Just lie low Ema, a valium sandwich always helps.

    take care,
    cheers!!
     
    maryb likes this.
  3. SOC

    SOC Senior Member

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    I have the best luck doing what my family calls "going into mega-rest mode". That means sleeping as much as my body wants, and staying in bed or recliner otherwise. I don't even cook. That's cut my relapses down to 5-7 days. If I had really bad flu-like symptoms, it might take longer. I suspect in those cases I might have been having a viral reactivation which would take longer to clear up.
     
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  4. Ema

    Ema Senior Member

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    That's what I've been doing. I've been sleeping for about 3 hours in the afternoon and staying in bed and not even going for my walks. But it is terrible for my spirit because I'm afraid it will not go away again...
     
    SOC likes this.
  5. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    you can be miserable with me Ema, the more the merrier or is that miserabler??
     
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  6. SOC

    SOC Senior Member

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    Yeah, it's a little scary at first, but now it's just routine for me because I figured out that I recover much faster if I do what my body wants. So, now I may get a little annoyed ("Oh, not this again." ;)), but I do it because I know it will end. Kinda like walking with crutches -- it's a pain in the azz, but you put up with it because it's better than not (in the long run).
     
  7. Tristen

    Tristen Senior Member

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    Well as always, we have to be careful. Even today with my significant partial recovery, I have to be careful with the PEM factor. But my experience is that if your on the mend with Vistide, It's kinda hard to sabotage that progress. My doc said the PEM would be my last symptom to go.....turns out he is right (at least for me). Relapse from pushing it too much is always a possibility.....but highly doubt you have. No dizziness for me. Never have had that. Mine is always that fluctuation of feeling Poisoned. My recovery from the PEM episodes have gone from 2-3 months when severe, to just days and most often hours, when at a milder level.
     
  8. vli

    vli

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    Really? i didn't know that... i thought i read for many ppl the last thing to "go" was brain fog/cognitive dysfunction. thx for telling us what ur doc said.

    Can you also explain this? do u mean when u were on vistide, that the only bad thing u felt was feeling poisoned?

    Thanks.
     
  9. vli

    vli

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    hi all, as i said a few posts above i am very rapidly declining. i've now raised one option with my doctor but since he's not familiar with vistide at all frankly i can't rely on his judgement (i already know ppl being uncomfortable with me getting vistide from someone here in hong kong who doesn't know it well, but i already outlined the reasons why i took this path so please don't ask me why i'm going this route again). my question is: i'm thinking i would see a marked decrease in toxicity if i lower my dose, but the official protocol for vistide as Ema would know is the dosage is calculated by weight. so if I ask my doctor to try to experiment with lowering the dose so i can get some relief, do i risk viral resistance? Bearing in mind: not that long ago montoya was saying you had to be on VALCYTE on real high dose to work, then in the past year or so he's publicly stated that no, he now believes a LOWER dose for a LONGER time is more likely to work. both valcyte and vistide are intended to target cmv/hhv6; so does montoya's change of mind mean that he DOESN'T think a lower dose of valcyte wld produce viral resistance? i know that's not in relation to vistide, but at least it's more info for me to use to decide whether i should try to lower my vistide dose. that is, even though that is not "official protocol".

    THank you.
     
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  10. Tristen

    Tristen Senior Member

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    No V, I was referring the the feeling of being "poisoned" as the everyday feeling of me/cfs, apart from any treatments.
     
  11. leeh

    leeh

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    Hi Ema, I never posted here or anywhere abt this nightmare illness in a longggg time as it takes up too much of my zero-energy and mind exhaustion. First I hope ur getting better from over doing it. I know too well how you feel and concerns. I read ur post abt seeng Lerner & getting IV Cidofavir. I was so excited because I have wanted to do that for so long and did not want to live in Nevada to see if Dr. P would treat me. I have been sick for 12 years, get worse and worse, did every possible AV/AB all different ways. Did Valcyte for abt one year doing Montoya dosing for 9 months and then even doubled for the last 3 months in hopes I would get better. No such luck, I feel I actually went more downhill after that as I could never get at least some consecutive days of feeling descent or ever wake up feeling rested, regardless of getting good sleep. Anyway I went to see Dr. Lerner in July, flew there from NY after emailing him, with the intention of doing the IV Cidofavir, even if it meant I had to fly there 2x a month or live there for the first month or so. I have all the highhh viral titers (EBV, CMV, HHV6), even very high EBV PCR and CMV in my spinal fluid. I saw that you went to him thinking he would prescribe the Valcyte, but instead he suggested the Cidofavir. I will cut to the chase, at my third visit after all the tests and labs done and he see's all the high viral titers on his labs, Dr. Lerner will not use the Cidofavir on me. He will only do high dose Valtrex (1mg/4xday) to start then add Valcyte in 4 weeks (not sure of the dose). I told him I already did all of this, and espec the Valcyte, on it longer than anyone I knew who tried it. Instead after on it my HHV6 & EBV titers sky rocketed to such high levels (versus going down) and it took many months after off the Valcyte for those levels to go back to my "normal-high levels". I did Valtrex 1mg am/pm and also did not help.
    I wondered if the study grant he recently received had anything to do with his change of treatment using the Cidofavir? Without going into more detail it made no sense to me, as I figured he started to use the Cidofavir this year since no one is getting benefit from his oral AB protocol? I am really disappointed. Wondered if you new of anyone else he recently put on the Cidofavir or anyone aside from yourself that appears to get some benefit? Is he measuring ur EBV, CMV, HHV6 titers? If so have they improved or changed at all?

    Has anyone done Dr. Lerners high dose Valtrex/Valcyte AB protocol with any success or failure?

    Appreciate feedback on anything from anyone. Emma I really hope ur doing better after over doing it.

    Pls excuse my bad spelling or sentence structure. Can't even remember how Cidofavir is spelled and 2 tired to look it up.
     
    vli likes this.
  12. Ema

    Ema Senior Member

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    I don't think so. I think the study is to look for predictive antibodies to CFS.

    I think some have gotten benefit from his oral protocol. I think SOC is one.

    I thought maybe he started using cidofovir because of the Peterson talk that came out last spring.

    I don't know anyone else on the cidofovir protocol unfortunately through Lerner.

    He is measuring all three viral titers and all of mine are high. They have not improved or changed in the 4 months I've been doing this.

    Did you ask him what the rationale for not using cidofovir was? I know he is not the easiest to ask questions of. I am sure you are disappointed. I would be too after all his tests and travel and such. I'd be curious to know too why he would use one protocol over another for seemingly similar cases. I can try to ask but I doubt I would get much of an answer.

    Thanks for the well wishes! I'm not yet back to where I was but I also keep falling and spraining my ankle!
     
  13. SOC

    SOC Senior Member

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    leeh ~
    My uncle, my daughter, and I all had success with Dr Lerner's Valcyte and Valtrex protocol. I'm not sure exactly which infections my uncle had, but daughter and I had EBV and HHV-6, but neither of us has any IgG antibodies for CMV.

    Something to remember is that you keep making IgG antibodies to viruses years after the primary infection. That's why some healthy people have highish titres to EBV and HHV-6. So, your IgG titres may not drop even if you are killing off the active infection -- especially within a few months. It's nice to see them going down, but not necessarily worrying if they don't.
     
  14. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    We need a "Damn ankle" emoticon!

    Sushi
     
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  15. leeh

    leeh

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  16. leeh

    leeh

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    SOC,

    Thank you for feedback. Did he have you on Valtrex 1mg 4xday? How did he dose the Valcyte 450mg 3xday??? How long did you stay on it all? How long were you sick before getting treated? I think that has so much to do w getting better or not having all 3 culprit virus's w no drug to knock off all three.
    I get the IgG stuff, but my levels shud not be where they are after being affected since fall 2001. I still have High Early EBV AB's and usually the reason it gets in ur spinal fluid, like the CMV is because it spills over from ur blood, so must have been overkill. If I ever feel better I don't care what my blood test come out to be, but I have bad blood tests and get worse every year and now my body falling apart too frm all the inflammation. I had cervical spine fusion in 2010 , and then diagnosed w Psoriatic Arthritis last year, that first hit my hips. I did not ever have Fibro.
    FYI, I was on Enbrel (which is similar to Rituxmab). I wanted to go on the Enbrel even b4 I ws diagnosed w the PsA because it was speculated that it may help the CFS, just like the Rituxmab and Nancy Klimas ws proposing to do a study w the Enbrel that never happened. I cud not convince my CFS doctor to giv to me. Well lucky me I almost got hip replacement surgery b4 I was accurately diagnosed by the second Ortho surgeon w PsA and then 2 Rheum also confirmed. So I went on Enbrel and my Rheum actually thought this wud help w my CFS too. I was so excited.
    Not so lucky, it helped w absolutely nothing, not the pain from PsA or fatigue...it all got worse and then some. Side effects were awful. so I'm not sure about the success of Rituxmub since similar.
     
  17. SOC

    SOC Senior Member

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    We started on Valcyte only, probably because we didn't have the high EBV early antigen titres that you do. Or maybe he's just changed his protocol. :) We did the Valcyte 1350mg daily for 12-18 months, then added the Valtrex 1g 4x daily. My daughter stopped the Valcyte a few months later. I stayed on the Valcyte about 6 months longer. Both of us stay on the Valtrex continuously to keep the herpesviruses suppressed, which our immune systems don't seem to be able to do on their own.

    I'm not sure how to judge how long we were ill pre-Valcyte. We both got the same very sudden onset viral illness at the same time 5 or 6 years pre-Valcyte. My daughter had very mild ME/CFS -- in remission most of the time with several crashes a year. I was continuously ill the whole time, starting mild and progressing to severe. My daughter became continuously ill following her pre-college vaccine boosters. The chicken pox vaccine (live HHV-5) probably reactivated her HHV-6 and it was downhill from there. Dr Lerner counted her as sick for only a year when she started Valcyte, while he considered me sick for 5-6 years.

    In our experience, getting LOTS of rest really mattered with Valcyte treatment. Whenever I started to increase my activity significantly because I felt better, my improvement with Valcyte would slow down or stop. My guess is that it takes a lot of energy for our bodies to kill off the infection and heal from the damage it did.
     
  18. Ema

    Ema Senior Member

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    Well all that makes sense unfortunately, leeh. I did not know that about the provision in the research study. It's terribly disheartening to think that though. He did not ask me to be in the study.

    I hope I am one of the cidofovir winners. These past few weeks have been pretty disheartening.

    I hope you get some improvement soon. You certainly deserve it! :)

    Ema
     
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  19. Ema

    Ema Senior Member

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    So I went for cidofovir 9 and ended up getting IV steroids for an adrenal crisis instead.

    Fun, fun! Not.

    I'm so sad but it looks like the AI diagnosis was correct the first time around. It kind of breaks my heart. I took it as such a sign of healing to come off steroids. I hate the thought of starting over again.

    Ema
     
  20. Sushi

    Sushi Moderator and Senior Member Albuquerque

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    So sorry! What a disappointment.

    Any idea what happens next? Have the steroids helped?

    Sushi
     
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