gm286
Senior Member
- Messages
- 146
- Location
- Atlanta, GA
I will try to be as concise as possible explaining everything. I am on:
- Cusack protocol (dx CCI and fibromyalgia ; muscle fatigue ; pain and inflammation of all sorts in connective tissue).
- Low dose prednisone (will remain indefinitely on this ; was at 10mg weaning to 5mg)
- LDN (standard ME/CFS treatment)
- Lexapro 15mg (Lab: low gut serotonin)
- Abilify 1ml (Lab: low gut dopamine ; 0.5ml on weekends).
- Liposomal vitamin C -- has mopped up the remainder of the PEM.
I really dislike posting stuff like this because I don't want to get overenthusiastic and I've literally had my entire twenties robbed from me due to this disease. I have had to be very stubborn vis-a-vis family, doctors, friends, and life partner who all at one point or another did not understand.
The gist to get straight to it: I have had two days and two nights of uninterrupted, pure, positive physical and mental energy. I go to work at 6:45AM - 16:45PM most days. Last two nights, I have gone to sleep at 12:30AM and both times woke up at 6AM with absolutely NO PEM, flu-like fatigue, brain fog, or exhaustion. I woke up feeling restored, like I did not any longer need to sleep at all.
This is a big deal because it just simply has not occurred in what seems like fourteen years, essentially the full amount of time I have been affected by ME/CFS. Obviously, I have probably had good mornings in that time, but this feels like a whole new threshold of achievement given the circumstances and energy demands from work.
The tipping point was the liposomal C which I seem to be absorbing (a contrario I know that regular C would not have had this effect). I am not sure if it is because I am stacking it on top of other medications and supplements or because I have simply never tried it. Maybe a bit of both?
I am also certain that everything else I am taking has been useful. The Cusack protocol has effectively cut down all sorts of muscle and joint problems for me. Abilify has been vital for psychic and mental energy. To say nothing of the prednisone, which single-handedly pulled me out of the worst of it last year -- it was the first medication I started and I've only gotten better on it.
I was still getting PEM and brain-ish, flu-like symptoms up until I added the liposomal C. I don't know how or why, but it is working shockingly well right now. I will revisit this post in the future to modify anything which does not reflect my progress long term.
Suffice it to say, my energy has been unrelenting. If I continue this way, there will no longer be any need to pace, but time will tell. I still have terrible eye floaters, continue to crack my back (though nothing like before, I would wake up stiff as if I had slept in a freezer), and need to readjust my cervical spine from time to time. But there is drastic progress here.
- Cusack protocol (dx CCI and fibromyalgia ; muscle fatigue ; pain and inflammation of all sorts in connective tissue).
- Low dose prednisone (will remain indefinitely on this ; was at 10mg weaning to 5mg)
- LDN (standard ME/CFS treatment)
- Lexapro 15mg (Lab: low gut serotonin)
- Abilify 1ml (Lab: low gut dopamine ; 0.5ml on weekends).
- Liposomal vitamin C -- has mopped up the remainder of the PEM.
I really dislike posting stuff like this because I don't want to get overenthusiastic and I've literally had my entire twenties robbed from me due to this disease. I have had to be very stubborn vis-a-vis family, doctors, friends, and life partner who all at one point or another did not understand.
The gist to get straight to it: I have had two days and two nights of uninterrupted, pure, positive physical and mental energy. I go to work at 6:45AM - 16:45PM most days. Last two nights, I have gone to sleep at 12:30AM and both times woke up at 6AM with absolutely NO PEM, flu-like fatigue, brain fog, or exhaustion. I woke up feeling restored, like I did not any longer need to sleep at all.
This is a big deal because it just simply has not occurred in what seems like fourteen years, essentially the full amount of time I have been affected by ME/CFS. Obviously, I have probably had good mornings in that time, but this feels like a whole new threshold of achievement given the circumstances and energy demands from work.
The tipping point was the liposomal C which I seem to be absorbing (a contrario I know that regular C would not have had this effect). I am not sure if it is because I am stacking it on top of other medications and supplements or because I have simply never tried it. Maybe a bit of both?
I am also certain that everything else I am taking has been useful. The Cusack protocol has effectively cut down all sorts of muscle and joint problems for me. Abilify has been vital for psychic and mental energy. To say nothing of the prednisone, which single-handedly pulled me out of the worst of it last year -- it was the first medication I started and I've only gotten better on it.
I was still getting PEM and brain-ish, flu-like symptoms up until I added the liposomal C. I don't know how or why, but it is working shockingly well right now. I will revisit this post in the future to modify anything which does not reflect my progress long term.
Suffice it to say, my energy has been unrelenting. If I continue this way, there will no longer be any need to pace, but time will tell. I still have terrible eye floaters, continue to crack my back (though nothing like before, I would wake up stiff as if I had slept in a freezer), and need to readjust my cervical spine from time to time. But there is drastic progress here.