Haven't had any real PEM now for awhile. I did quite a lot yesterday and didn't feel 100% while doing it, but I woke up this morning with muscles aches and mild fatigue, instead of a full blown hellish crash.
This took ages to achieve and I'm pretty convinced the beta glucans and reishi are the culprit. So to be accurate I still get PEM but it's so mild it's not nearly as noticeable as it was and it doesn't lay me out in bed for days or weeks struggling. I do think the glycine and nac really help to get the body working again after a crash.
Someone on twitter asked me the other day what I feel has helped me most on the protocol and why. It was a hard one to answer, but I think it's ultimately been a combination effect. I did stop taking r-ala the other day though and have noticed zero change either way. It's possible my ROS levels have been under control for awhile - hence the reason why my fatigue is extremely mild now about 5% of what it was and my PEM is also the same or non existent.
However as I have energy and have been aggressively pacing for so long it feels really quite strange. At the same time if I go and do something I start to feel tired within an hour, so my energy envelope has increased a lot and I don't get into symptomatic territory quite as quickly, it does still happen.
Recently I've had to reduce the oat bran to 1 dose per day just so I can sleep, but the last two nights on 1 tablespoon oat bran per day I have been struggling to sleep. I take 1 tablespoon at 8am and then I feel awake at 10pm, just from that single dose!
Also the b vitamins I know now have eradicated my cranial cervical inflammation. I was chatting with someone on twitter the other day who said b vitamins are a huge thing in the EDS community, as they seem to have a big impact on symptoms, possibly even CCI symptoms. All I know is that my neck issues are more or less gone 90% if not 100%. But as soon as I remove the b complex they start to come back within about 4 or 5 hours of a missed dose. So I've decided to start compounding my own b complex, using Freddd's approach as a guide because when I take the b complex it not only knocks down my sex drive and mood but I think it might also be making me really dizzy in the day. Suffice to say I think it could be an issue with the metafolin or b12 doses and other b vit doses in the compounded solution.
So the only way to figure that out is to make my own.
I only take egcg 30mg twice a day now. 120/120/60mg was putting me on edge, making me argue with people at work, I had a very short fuse, I also could NOt relax, was fidgeting almost all the time. However removing the egcg caused terrible viral type pain. Even so I DO think it has a use and it's a good idea to take it, hence the low doses. I may get rid of it one day but I think I would loose the benefit if I did.
Saying all this if my ME is actually getting better through viral clearance and cleardown, it makes sense some of these things might not necessarily be needed as much and others (b complex by Thorne) may need to be compounded to find the right effect AND discover and deal with any defiencies. Also I've read that B2 plays a vital role in all b vitamins being able to work and thorne b complex has only 10mg b2, the lowest of everything in the mix.
So the next experiment is to figure out the b vitamin levels and get the benefit of the amelioration of cranial cervical and spinal inflammation. I also noticed when I start to remove the b complex my back muscles start to seize up and it can get quite painful if I'm not careful. The first time these symptoms occurred I figured, it's probably just my imagination. But it's occurring twice now, same thing both times, so the b vitamins are obviously responsible for clearing inflammation in this area.
This took ages to achieve and I'm pretty convinced the beta glucans and reishi are the culprit. So to be accurate I still get PEM but it's so mild it's not nearly as noticeable as it was and it doesn't lay me out in bed for days or weeks struggling. I do think the glycine and nac really help to get the body working again after a crash.
Someone on twitter asked me the other day what I feel has helped me most on the protocol and why. It was a hard one to answer, but I think it's ultimately been a combination effect. I did stop taking r-ala the other day though and have noticed zero change either way. It's possible my ROS levels have been under control for awhile - hence the reason why my fatigue is extremely mild now about 5% of what it was and my PEM is also the same or non existent.
However as I have energy and have been aggressively pacing for so long it feels really quite strange. At the same time if I go and do something I start to feel tired within an hour, so my energy envelope has increased a lot and I don't get into symptomatic territory quite as quickly, it does still happen.
Recently I've had to reduce the oat bran to 1 dose per day just so I can sleep, but the last two nights on 1 tablespoon oat bran per day I have been struggling to sleep. I take 1 tablespoon at 8am and then I feel awake at 10pm, just from that single dose!
Also the b vitamins I know now have eradicated my cranial cervical inflammation. I was chatting with someone on twitter the other day who said b vitamins are a huge thing in the EDS community, as they seem to have a big impact on symptoms, possibly even CCI symptoms. All I know is that my neck issues are more or less gone 90% if not 100%. But as soon as I remove the b complex they start to come back within about 4 or 5 hours of a missed dose. So I've decided to start compounding my own b complex, using Freddd's approach as a guide because when I take the b complex it not only knocks down my sex drive and mood but I think it might also be making me really dizzy in the day. Suffice to say I think it could be an issue with the metafolin or b12 doses and other b vit doses in the compounded solution.
So the only way to figure that out is to make my own.
I only take egcg 30mg twice a day now. 120/120/60mg was putting me on edge, making me argue with people at work, I had a very short fuse, I also could NOt relax, was fidgeting almost all the time. However removing the egcg caused terrible viral type pain. Even so I DO think it has a use and it's a good idea to take it, hence the low doses. I may get rid of it one day but I think I would loose the benefit if I did.
Saying all this if my ME is actually getting better through viral clearance and cleardown, it makes sense some of these things might not necessarily be needed as much and others (b complex by Thorne) may need to be compounded to find the right effect AND discover and deal with any defiencies. Also I've read that B2 plays a vital role in all b vitamins being able to work and thorne b complex has only 10mg b2, the lowest of everything in the mix.
So the next experiment is to figure out the b vitamin levels and get the benefit of the amelioration of cranial cervical and spinal inflammation. I also noticed when I start to remove the b complex my back muscles start to seize up and it can get quite painful if I'm not careful. The first time these symptoms occurred I figured, it's probably just my imagination. But it's occurring twice now, same thing both times, so the b vitamins are obviously responsible for clearing inflammation in this area.
