How acute is acute

[SOC]

After the acute onset what has your guys' trend been in terms of symptom severity?
I was somewhat stable until I had an episode of overexertion, and since then my setback was permenant, yet I continue to get worse EVERY DAY. I have done nothing just rest for months now, great sleep and naps but it doesn't matter- every single day I wake up and my brain in noticeably worse- physically I'm the same. It's been several months now that I get worse daily. Is this normal? Shouldn't i at least be stable considering how much I rest and how good my diet is?

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. ) 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.

 

[SOC]

I tell people it was like being hit by a train

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...

 

[Allyson]

Is acute onset possible for CFS? From what I've read it seems like it's solely an ME thing

I was also tested for Lyme in blood and spinal fluid but both came back negative. Neither was one ofthe advanced labs tho, I would be curious to try one

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