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Nitric oxide and its possible implication in ME/CFS (Part 1 of 2)
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How acute is acute

Discussion in 'General ME/CFS Discussion' started by Aerose91, Nov 18, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    After my acute onset I was still 80-90% normal with occasional crashes, but with a slow, steady downhill decline over 4-5 years. Basically, every crash decreased my functionality a little without a return to previous baseline. At that point I got some treatment (sleep and thyroid) and management skills, mostly pacing with HR monitor based on my measured AT. I stopped the downhill slide by staying under my AT, which meant no walking more than 20-30 feet, stairs only once a day and that with a sitdown rest halfway, sitting (not standing) in the shower, napping after showers, and so on. It was very, very limited, but at least I wasn't getting worse.

    Daughter and I then had bad crashes after she got her pre-college vaccines. Probably the live-virus chicken pox (HHV3) vaccine reactivated her HHV-6 and EBV, or the live virus vaccine stressed her immune system enough that they reactivated. Anyway... we both got worse after that and then got H1N1 which went untreated ("It's just allergies. You'll be fine once it frosts. :rolleyes:) until we both got pneumonia. We kept going downhill from there with no return to previous baselines until we started Valcyte which gave both of us substantial improvement and slow continuous upwards trend in our health since. Some of that upwards trend is due to additional treatments, so it's not just the Valcyte, but the Valcyte was definitely the turning point from declining health to (slowly) improving health.
  2. SOC

    SOC Moderator and Senior Member

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    Me, too. I'm not sure why, though, since being hit by a train would realistically be very different from getting ME/CFS. Still, "being hit by a train" is always the first phrase that comes to mind when I think about that sudden onset. I wonder why...:confused:
  3. Allyson

    Allyson *****

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    yes the basic lyme tests are useless apparently and you need specialist testing to accurately diagnose Lyme - quite a few are finfing they have now so worth pursuing IMO

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