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SOC- Thanks. Some of the ingredients are listed online, but I believe all of the bottles have the ingredients and amounts listed (I'm just not near the bottles now.) Fortunately, I'm not usually bedbound 23 hrs/day. I'm about a '2' on the Phoenix Rising Activity level scale -Moderate to severe symptoms at rest. Moderate-severe symptoms following
exercise; overall activity level reduced to ~20% or less of what it used to be able to do. Able to leave house; a couple times/wk for a couple hours at a time. confined to bed more than 1/2 the day; Unable to concentrate for more than 1 hour a day divided into 10-15 min. sessions.
Oh yeah, I remember that period in my illness. It was miserable.
Here's what worked for me:
1. Pacing so that I wasn't always in a crash state. I needed to do HR monitoring to realize that
everything I was doing down to taking a shower or walking across a room was putting me over my AT. Once I trained myself to stay below my AT, quite a few of my symptoms at rest lessened. I couldn't do much, but I didn't feel quite so bad. There are several thread here at PR on pacing according to HR using a HR monitor. Definitely worth trying.
2. Antivirals
This was huge for me. I had active EBV and HHV6. Treating those got rid of the flu-like symptoms including a lot of the muscle/joint aches. It also improved the cognitive dysfunction significantly. If you've got infections, antivirals are definitely worth trying if you can get them.
3. Sleep meds
Trazodone did wonders for me. I don't think I'd ever achieved deep sleep or stayed asleep all night in my entire life before trazodone. Getting decent sleep helped me feel better in hard-to-describe ways, although the usual ME/CFS symptoms were still there.
4. Treatment for OI
This was another big one, although not as much as antivirals. With meds for low blood volume and tachycardia, I am able to be upright more without getting exhausted or completely brain-fried. I don't have to nap 3-5 hrs in the afternoon (unless I'm in a crash), which makes life a lot easier. I still have to sit in a recliner (feet up, in other words) for a large part of the day, but that's a lot better than being in bed all day.
What I've not been able to get past is PEM. My PEM threshold is higher than it was 4 years ago, but it's still very low. I've orchestrated my life so that I'm doing the most I can without PEMing myself but the smallest bit extra, like 15 minutes more housework than usual, and I'm crashed. Very frustrating. Still, it's SO much better than being bedbound with not enough ability to concentrate to read.
You should be able to get sleep meds, treatment for OI, and pacing guidance from any decent ME/CFS doc, and even some GPS. Those could give you a significant quality of life improvement, although they are very far from cures for the illness. I'd push for those ASAP, whether it's with Dr E or your GP.
Some people have had some luck with dietary modifications. They haven't done anything for me or my daughter, but we don't have any of the GI symptoms common in ME/CFS so that could be part of the reason.
Antivirals, antifungals, antibacterials, and immune treatments are much harder to get --- and often take longer to work than the basic "starter" treatments. And when you start talking Ampligen, Rituximab, and the like.... well, those are VERY hard to come by. Only a few docs do them, and only a small fraction of their patients get them. And since they are experimental insurance doesn't cover them and the cost is far more than most of us can afford. Sucks, dunnit?