Thursday, March 5, 2009

2nd LDN anniversary

No worries, I'm not dead yet - just not much reason to blog, except for today. I've been on LDN for two years now and still no illness progression. Unfortunately I've developed quite a few new symptoms during the time, four fairly serious one since last June alone, but my functionality is still quite similar. The worst new symptom is overt adrenal insufficiency, which means I have to take hydrocortisone most of the time and easily get hypoglycemic. I've had a few adrenal crises too, but luckily nothing requiring hospitalization. Haven't had any infections in the last year, except for a bout of probable bronchitis, which went away on its own.

Currently I'm taking the following meds and supplements:

  • LDN 4.5 mg
  • piracetam 2x1,200 mg *
  • baclofen 10-20 mg *
  • melatonin 1.5 mg
  • undenatured whey protein ~20 g
  • creatine ~2 g **
  • D-ribose ~10 g
  • glutamine ~3-6 g **
  • acetyl-L-carnitine ~750 mg
  • Q10 100 mg
  • R-lipoic acid 100 mg
  • magnesium 350 mg
  • vitamin D 50 mcg
  • vitamin C 2x500 mg
  • multivitamin
  • probiotic
  • Siberian ginseng (for cold prevention)
  • ashwagandha (for sleep) **

* currently not taking this as I've run out, hoping to get more really soon
** may ditch this soon as it doesn't seem to do anything or is redundant

and as needed:

  • hydrocortisone 2-10 mg
  • celecoxib 200 mg
  • bromelain & quercetin (for preventing post-exertional muscle pain)
  • licorice & rhodiola tea

I no longer have to take the nimodipine (which restored most of my cognitive function) and I still retain its benefits - isn't that grand?

I haven't been able to play badminton since the last time two years ago, except for a short outdoor stint in the summer. Hopefully more this summer. I did go swimming a few weeks ago, for the first time in years. To my surprise, I was still able to swim. I had assumed I couldn't do it due to the residual muscle weakness I have, but I could. And because of taking a lot of bromelain, I didn't even have post-exertional myalgia. Just some fatigue, not bad.

I'm also happy to report that someone from my Finnish CFS/ME forum who started LDN recently has experienced great improvement. She has had fairly severe CFS/ME to the point that she hasn't been able to do much of anything at all. Now she can take long walks without much repercussions, the oversensivity of her senses has significantly reduced and she can watch TV for the first time in ages. Her asthma (or fairly severe breathing problems which have been diagnosed as asthma) is much better and she is also experiencing some relief in the food allergies that CFS/ME has caused, which previously prevented her from eating almost all foods. I guess it's needless to say she's very happy!

1 comment:

cfswarrior said...

I'm glad to have found your blog. I've been wondering about LDN for myself. Like you I have a severe case and am very limited in my funtioning. I'm heartened to see that you actually went swimming!

I look forward to reading through your blog.