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!

Summer heat

Some three months now. Time sure passes quickly. I got the first copy of my book, the summer is coming and stuff. I seem to be more intolerant to heat than before, I don't think it's the LDN, but residue from the prednisone - as compensation I'm much less sensitive to cold, which used to be a major culprit for me. I'm dehydrated all the time, and drinking doesn't help much, as I'm probably deficient in antidiuretic hormone.

The LDN makes me tan a lot more easily without making me burn easier. Not surprising really, as beta endorphins stimulate melanocytes (which in layman language means tanning). Not that I'm brown or anything, but usually I tan very little and burn easily.

My exercise tolerance hasn't really improved from what it was two months ago and hills are a pain, but my persistence has paid off and I've managed to lose pretty much all the weight I gained while on the pred. I still have a little paunch, but I can fit in every single one of my clothes again. Apparently my face has got a lot thinner in the past month (sadly my face has always looked somewhat chubby, even though I've been underweight for well over a decade).

The MSM doesn't seem to do that much at 6 grams a day, eg. my congestion is still there. Though now that I started large dose N-acetylcysteine it's gone except for the mornings. The NAC seems to improve my muscle endurance, even though it doesn't affect the overall fatigue.

I've started to use rhodiola more often, now that I noticed that yes,
it actually works quite well - it seems to work better on the LDN than before. I also started propolis today, when I noticed I could get three month's worth for some six euros. I still want to try creatine and olive leaf extract, but I'm trying to promise myself no more stuff after that (except for some prescriptions which I might get soon).

I can't really remember when I last had noticeable urticaria. It's not like it has been weeks, but it's becoming less and less frequent.

(Sorry for any odd linebreaks, Blogger's acting up again.)

Brain and other tissues

A few assorted things: I got my MRI results a few weeks ago. There were abnormalities typical of CFS, but they were of course written of as "normal". I assumed there would be such punctate changes, but it's still a bit freaky to get the results, that you have brain damage that shows up even in something as unspecific and crude as an MRI. So I have objective evidence of CFS having caused me both brain lesions and heart damage. Which is just disturbing to think about, damage to two of your most important organs. The brain lesions might also explain why I still have so much trouble with memory and concentration, even though LDN, piracetam and other things have helped them and reduced my cognitive fatigability quite a bit.

On the good news side, I've managed to lose a little weight. I've never been overweight by any stretch, but for a while I could hardly fit in any of my pants due to the prednisone-caused "paunch". I can mostly thank LDN for this, as without it I wouldn't have been able to exercise nearly as much as I've done recently. Actually I probably do too much of it as my muscles and joints are frequently sore afterwards, but at least I don't get CFS crashes. But the weather is already starting to get too hot for me already, at below 20C.

I don't know if my exercise tolerance will worsen now that I will most likely have to discontinue both acetyl-L-carnitine and glucosamine at least for a while due to money issues. But then again I'm taking too many supplements as it is. For a week now I've been trying some kind of a "brain stimulator" which is a little device with a few infrared leds. NASA has used them for healing injuries, but the guy who borrowed this device for me says it's good for brainfog. I'm not convinced but I got a free trial, so I could as well try. So far I don't think I've noticed anything.

My skin still isn't doing particularly well, but I'd say my hair and nails are definitely better than they were before LDN. Not that I had much problems with them before - CFS has made my hair brittle and it gets tangled very easily, but it has always looked fairly silky, smooth and shiny. But now I think it looks better, and my nails are stronger. Not that it's really relevant, just an observation. Shows how my body is in a better shape overall.

Still alright

Yeah, the badminton went well. I felt incredibly hot but didn't really get fatigued. The 45 minutes went incredibly quickly. Not much fatigue today, but some of my muscles feel rather sore and have got worse during the day despite multiple stretching sessions. When I woke up I felt a bit icky and concluded I was still dehydrated and lacking salt, so I munched on some salted nuts and crackers. I have a feeling I took too much magnesium citrate (500 mg I think) yesterday, and the vasodilation caused the hotness and flushing face and got my sodium levels out of balance. But no big harm done and I will keep that in mind in the future.

We made Ethiopian lentil soup today. It was rather good. Sadly I'm still as oversensitive to onion fumes as I used to be, which makes cooking with onion rather tricky even if you keep the window open and someone does the actual chopping.

Making the most out of it

Life has been much more enjoyable when I can actually do things (like exercise and cooking)m don't have to worry about the repercussions and don't have to spend time just idling and having to stave off boredom. Well, today spent about two hours feeling like a zombie, as I decided to take a long, warm and relaxing bath which was apparently a bit too relaxing, as I could have easily fallen asleep then.

I've been eating more healthily than for ages, as now I can actually cook instead of eating frozen and canned stuff on most days and I don't put off eg. eating fruit and veg due to the energy needed to peel and slice it. I'm also getting into sprouting again, my broccoli sprouts should be just about ready.

One weird thing about the LDN is that I have a lot of strange dreams every night, but I just can't remember them. Normally I can almost always remember my dreams and some nights I could easily write half a page about them, but now it's different. Eg. last night I had a whole bunch of strange dreams and when I woke up in the middle of the night I tried to memorize it so that I'd still remember it in the morning. And in the morning I can only remember that one of my friends was in one of the dreams.

I'm leaving to play badminton soon. It's been years since I have even considered playing sports (except when I was on prednisone) and it's been a decade since I last played badminton. It might be excessive, but I'm confident that the most I'll get is a set of achy muscles. Let's see if I'm wrong.

Two weeks

Not much to update here. I've been on LDN for two weeks now. Today I managed to overexert myself a little by doing a whole bunch of cleaning up and repotting and transplanting a total of six plants. I rested in bed for a bit, something I haven't done much for two weeks now. After I got up I decided to exercise and did stretching and muscle exercise for some 15 minutes (would have gone for a walk but it was very windy outside) and instead of getting more tired like things tend to be with CFS, the tiredness wore off.

I think my hair has got a bit less greasy than it usual (which is good of course), but that could be just my imagination. It looks very good anyway. My skin is still a little spotty, but I feel like it's starting to clean up now.

Run, forest, run!

I got an email from my doctor saying that he had already prescribed LDN for another patient of his. Whoa! I really hope (s)he'll get good results, both for his/her own sake and the sake of encouraging future LDN prescriptions for others.

I've tried to stretch and walk as much as I can every day, even though the former feels a bit silly since there's "nothing to stretch" as my muscles aren't sore and crampy as usual. But I know it does good for circulation and joints at least. I try to rotate and stretch myself into every possible direction instead of just doing "classical" pre/post training stretches.

Yesterday I actually made several walks and during the last walk I tried to see if I can run short distances (like 100-200 m) as a form of interval training. To my surprise I could and I even enjoyed it. I would get out of breath in the end just like a normal person would, but it would dissipate in 5-10 minutes instead of taking an hour and it would not feel particularly awful. My muscles didn't complain at all. No bad after effects. I'll probably try to do more of that today.

Compare this to the day two weeks ago when I had my doctor's appointment. I ran like 50 m trying to catch a tram which was ahead of its schedule, I failed to catch it and I got some kind of an asthma attack (I have exercise-induced asthma, no meds) and I pretty much felt like dying, my muscles felt like shit for a long while afterwards and I could hardly walk from the tram stop to the doctor's office.

Some people think that I haven't exercised much because I'm lazy and unmotivated and don't like it, but that's total bullshit. I didn't like it much when I was still healthy, but I guess CFS learnt me a lesson (how lame). A few years ago I used to walk a lot, go dancing and do a well-planned combination of stretching and mild muscle workup up to 4x45 minutes a week. But then I got too sick to even stretch much and my ability to walk greatly diminished. I'd love to go bowling - if I could just lift the ball! - and if I suddenly got 100% healthy I'd probably get a gym card, at least if I could afford it. Off-topic rant ends now.