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Lessons from ME/CFS: Finding Meaning in the Suffering
If you're aware of my previous articles here at Phoenix Rising then it's pretty clear that I don't generally spend my time musing upon the philosophy of the disease. I find it better to spend my time reading research and trying my best to break it down to its core elements and write...
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My experience with ARVs

Discussion in 'XMRV Testing, Treatment and Transmission' started by randalbond, Aug 27, 2010.

  1. redo

    redo Senior Member

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    Hi


    No, I haven't read that. Could you give me link? I'd really appreciate that.

    It seems several medications that mess around with the immune system can cause CFS. Rimonabant is another example, it may cause both CFS and other CFS like syndromes.
  2. kess3881

    kess3881

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    not for nothing but lots of meds these days that you can buy from the internet are counterfeit, might wanna take that into consideration.
  3. Xandoff

    Xandoff Michael

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    To Gu3vara,

    I was interested to read that you have not had a cold or flu in ages, since I came down with CFS in 2002 or 2003(?) I have not had one cold or flu? As a severe Asthmatic since I was 3 months old and was treated with immunetherapy for 10 years due to sixty allegies I always got colds and bronchitis as an adult. After I came down with CFS, no colds or flu. Perhaps my immune system is in hyper drive or maybe it is because I don't get out anymore.

    I hope your gut is right, (it usually is) and you are turning the corner.

    Thanks to RolandBond for his amazing story. I have entertained the same thoughts t times and I applaud his courage and also hope things turn for him. We are all in this together.

    "Weakness is tiring, but strength is exhausting"

    Charles Dickens
    NN
    Xandoff
  4. Daffodil

    Daffodil Senior Member

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    has anyone heard from randalbond?
  5. randalbond

    randalbond

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    Sorry, guys, too ill to be a member of any forum. Can't endorse ARVs in any way based on my experience.
  6. Esther12

    Esther12 Senior Member

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    Sorry to hear that. Hope you start feeling a bit better soon.
  7. Daffodil

    Daffodil Senior Member

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    randal.....you sounded exactly like me when i started the ARV's....i stuck through the hell and am now a little better. still homebound but no longer suicidal. i hope you get in touch.

    love
    sue
  8. Grape Funk

    Grape Funk Senior Member

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    What's the burning feeling like that goes along with the mold/ toxin exposure? Is it just when on antivirals or arv's or can happen spontaneously?

    Btw xandoff, im the same way, don't get colds, and other little nuisance ailings either
  9. redo

    redo Senior Member

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    Randalbond: Have you tried Imunovir to get out of the relapse/worsening?

    Imunovir works (as I understand it) by stimulating the immune system to fight the retrovirus. It's a real help to stop or slow down the HIV to AIDS thing (other drugs taken over now, but it stil works).


    I'll try it soon. Keep in touch in caus you want to know how it goes.
  10. Forebearance

    Forebearance Senior Member

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    Grape Funk: It feels like nerve pain in your skin. It can happen spontaneously.

    I had it when I lived in a place with toxic mold growing in it. But it can also happen to someone who is experiencing a flare of inflammation. A general increase in inflammation can make you more sensitive to toxins of all kinds, I think.

    I really hope randalbond is surviving okay these days.
  11. Daffodil

    Daffodil Senior Member

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    has anyone heard from randalbond? i keep worrying a little. i think i messaged him long ago but got no response.
  12. redo

    redo Senior Member

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    I hope you are doing better Randalbond.

    I got very much the same as you following a failed trial: General malaise, coming and going joint pains (never had them before), other of my symptoms also got worse, cogitive abilities have been especially declining (I have very much more severe problems). And, with me also it's actually easier to read than write following the relapse. My paresthesia is also (a heck of a lot) worse. With me also, it kept getting worse and worse for over a month after I quit (very strange thing, and it makes me think the ARVs poked at something, and not that it's "normal side effects"). I am much worse over a year after I quit. The symptom flare have not likely come as a normal side effect.

    There are some things I think about this whole thing. One is that given our response, I still very much think retroviral involvement is a key in ME (although I am leaning more towards a endogenous retrovirus, such as HERV-Ws potential role in MS). Although I am much worse now than years ago, I don't regret trying given the knowledge I had at a time. My life is running out (getting older, it's slipping away so fast), so I'd rather try and have the potential to fail bad, than don't try and be guaranteed failure the next years or so.

    If you're reading here Randalbond, I'd recommend the OTC antihistamine Alimemazine to help allivate some of those problems. It helped me, especially with the cognitive almost ADD like problems which have sprung out of nowhere when the ARVs whipped up the symptom flare.
  13. Charles555nc

    Charles555nc Senior Member

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    I was on Raltegravir and Truvada. And although I really wanted the Raltegravir to work and although at first I noticed increased energy and activity while on both, I think the raltegravir is the one of the two I cannot tolerate. Its feels literally like poison moving through my veins, irritating nerves all over my body, causing pain along my spine and upper back, and causing worse parathesia.

    Im glad I didnt persist, because arvs are 100% capable of progressing your illness. My teeth were so sore after the Raltegravir, that I thought they might fall out. I thinK I might try jsut the truvada at some point, but I want a couple months to pass before I try again.

    Im finding improvement with 5 grams sodium ascorbate, 50,000 iu of beta carotene, 2 grams lysine, proline, and glycine, 600mg NAC with each meal. It IS alot of pills but its working to make me feel better.
  14. redo

    redo Senior Member

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    If anyone has some thoughts on what could be causing the horrible exacerbation that both I and randalbond have experienced following the ARVs, than please do weigh in. It's been more than a year, and it's still there. And it's pretty alike with both of us.

    It seems likely to me, that it has at least has poked at some relevant mechanisms.
  15. Daffodil

    Daffodil Senior Member

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    maybe the ARV's killed off some weaker virus and when we stopped them, the stronger ones replicated?

    maybe the drugs caused more mitochondrial damage?

    very wild guesses....
  16. baccarat

    baccarat Senior Member

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    I briefly looked into arv a year ago when I thought I might give those a try. I quickly changed my mind after looking into side effects and hearing feedback from some hiv guys.
    If I remember correctly they are associated with a higher mortality rate from various other causes. Quite brave anybody on them. Good luck.
  17. redo

    redo Senior Member

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    Thank you for your reply daffodil. The ARVs are supposed to work against RNA viruses, so I am not sure which weaker ones as you write that could be. I am not sure which stronger ones you are mentioning could be either.

    Now that XMRV is dead, the only plausible thing I could think it could have poked at is a gamma retrovirus akin to the HERV-W virus (endogenous RV).

    My doctor and I talked about that. Mitochondrial toxicity. But, after such a short course, it shouldn't last long (a month or two tops), it shouldn't just keep evolving a long time after I quit, and most importantly, my symptom flare didn't match the ones which comes from that.
  18. Daffodil

    Daffodil Senior Member

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    hi redo. you are right...xmrv is TOTALLY dead. no hope for that one.

    maybe there is another gammaretrovirus. i know many think its an HERV...but my gut tells me it isnt...
  19. redo

    redo Senior Member

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    Hi Daffodil,
    I am worse right now, so I'm not doing much writing at the time. The failed ARV attempt made my illlness much more unstable and stronger.

    If you can elaborate on why you think a ME retrovirus would be exogenous rather than endogenous, than that's appreciated.
  20. Daffodil

    Daffodil Senior Member

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    hi redo. i guess ijust feel that if it was endogenous, there wouldnt be outbreaks.....its odd to have a cluster of people suddenly experience endogenous virus symptoms after the same infection, isnt it? it just seems counter-intuitive to me.

    CFS can be shown to spread from blood to blood....if you drop CFS blood into healthy blood, you can actually watch the disease spread. would that happen with an endogenous retrovirus? hard to imagine..

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