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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Protracted Withdrawal or CFS

Discussion in 'General Symptoms' started by LiveAgain, Feb 16, 2013.

  1. LiveAgain

    LiveAgain

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    Hi, I'm looking for opinions/insight. I've been sick since 1997, after a nasty cold turkey withdrawal from Klonopin. I had "only" been on the drug for 6 months. I was hit with a ton of symptoms that match CFS, but also match protracted withdrawal syndrome. I saw Dr. after Dr. trying to figure out what wrong with me to no avail. One Doctor in 2000 suggested I had CFS based on an EBV test showing chronic active infection, but less was known about CFS then and the benzo people kept telling me I had protracted withdrawal syndrome, so I pretty much accepted that... although kept looking for other diseases just in case.

    I continued with all the same symptoms until 2007 when things took a turn for the worse with new heart and breathing symptoms - I was finally diagnosed with POTS. I decided ok, maybe it's not protracted withdrawal. I then found out POTS and CFS often occur together. My PCP re-checked my EBV in 2011 and it still shows high levels of chronic active infection. However, I've recently learned from others that they developed POTS as a result of benzo withdrawal. I thought oh no, here we go again. I do also have a low NK count (function is OK), but does that reallly mean anything. And Brain Spect which my Dr. said shows a CFS pattern, but again, is this proven/reliable evidence for CFS. Maybe this reflects damage from the benzos?
    I had mostly dropped the benzo idea and am now questioning it again. Do I really have CFS or could this be long term, possibly permanent benzo damage?
    Thanks for any insight.
  2. liquid sky

    liquid sky Senior Member

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    Since 1997? I would think that if your doctor showed you have developed POTS and have an abnormal SPECT scan, along with high titers to EBV, that CFS is a lot more likely.
    heapsreal, taniaaust1 and adreno like this.
  3. LiveAgain

    LiveAgain

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    To be completely accurate, I briefly reinstated with Valium 4 years later with the idea that I would get out of protracted withdrawal, do a slow taper off and then hopefully be cured. The whole thing backfired and after a few months, I got off of that and have been completely off benzos since 2001. So technically 11 1/2 years. I know it probably sounds crazy, but I went through withdrawal, was hit with the symptoms and most never went away. Year after year passed and I thought this has to get better, but it didn't. Around that time I met other people (online) who went off their benzo and were sick for years after. Most got better in time, but a few, like me, did not. After many more years, I decided this can't still be benzo related, but now that I'm hearing about people developing POTS from benzo withdrawal, I'm wondering again. I don't like the CFS diagnosis because of the lack of answers, but I think benzo damage might be even worse. :(
  4. liquid sky

    liquid sky Senior Member

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    Did your symptoms go away when you reinstated with Valium? There is a big difference between brain damage from high doses of benzos and what brain scans show in CFS. Spect scans will show reduced blood flow in certain areas of the brain in CFS. Benzo damage will show up as atrophy of the brain, with ventricular enlargement.

    Maybe you can discuss your brain scan more with your physician. That might help you to decide what is actually wrong?
  5. taniaaust1

    taniaaust1 Senior Member

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    Sth Australia
    Sounds to me that you have CFS and it was just via coincidence you developed it when you were taking Benzos (the Klonopin could of even been masking some of its symptoms).
  6. LiveAgain

    LiveAgain

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    When I reinstated I felt some improvement (not total relief), but enough that I thought hmm, maybe this is protracted withdrawal. After I felt somewhat stabilized and made my first cut though all heXX broke loose and I spiraled downward. I tried upping the dose, didn't work, so I tapered off and never touched another benzo. At that point I was sicker than ever, had to stop working (2001) and have been stuck ever since.

    I was officially diagnosed with CFS by a reputable CFS Dr. in 2012. I asked her what the Spect meant... like could it be Lyme Disease (because I had also bitten by two ticks the summer before I became ill) and she said, no this is a typical CFS pattern. Hypoperfusion in several areas. Initially I was not on high doses of benzos - the most was 1mg of Klonopin and only for 6 months. The other thing is when I first went cold turkey, I also came down with a nasty cold at the same time - separate from the withdrawal. Then I think as Tania suggested maybe the Klonopin was just a coincidence and I have viral onset CFS. If I were to talk to a seasoned benzo person though, they would tell me to stop chasing other diseases, this is PWS. That's hard to accept.

    Thanks for the input. I'm just trying to work through this logically.
  7. liquid sky

    liquid sky Senior Member

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    "When I reinstated I felt some improvement (not total relief), but enough that I thought hmm, maybe this is protracted withdrawal. After I felt somewhat stabilized and made my first cut though all heXX broke loose and I spiraled downward. I tried upping the dose, didn't work, so I tapered off and never touched another benzo. At that point I was sicker than ever, had to stop working (2001) and have been stuck ever since."

    The fact that Klonopin is used to treat some of the symptoms of CFS complicates the picture. It does sound like viral onset CFS, however. Sounds like you were diagnosed by a good doctor. If you still have concern about your diagnosis, you could get a second opinion.
  8. caledonia

    caledonia

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    Based on methylation/glutathione depletion hypothesis, the withdrawal could be the straw that broke the camel's back. The fact that you were on Klonopin in the first place (for anxiety?) is a red flag that you were already having methylation issues. All you needed was one more load on your body (either from toxins, viruses or extreme stress) to make you sick with ME/CFS. If it wasn't the drug withdrawal, it would have been something else - just a matter of time.

    The good news is you should be able to treat your symptoms with a methylation protocol.

    As far as is this protracted withdrawal - even people who cold turkey off of SSRI's and have severe withdrawal are back to 100% (or very nearly so) within 3 years.
  9. LiveAgain

    LiveAgain

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    Thanks again for the input. I'm not sure what the methylation/glutathione theory is - I'll have to look it up. The other possiblity I've considered is maybe the cold turkey withdrawal itself was so traumatic it triggered some sort of autoimmune response - CFS? I guess until there is a definitive test for CFS, until we really know what it is, there's no way to know for sure if you have it.

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