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.

One-month conclusion

I've now been taking LDN quite exactly for a month, depends on how you count. I made a kind of summary of perceived improvements so far. I hope I haven't forgotten anything, though most likely I have.

Main symptoms

fatigue: improved quite a bit
brainfog: somewhat improved, still very bothersome
cognitive fatigability: improved quite a bit
muscle endurance: improved quite a bit
muscle weakness: improved quite a bit
chronic urticaria: 80-90% better
tiredness: pretty much unchanged
fever: temperature is a bit higher, but the feeling of feverishness is reduced
urinary frequency: unchanged at first, recently worsened (I don't think it's due to LDN, it gets worse at times)
muscle aches/soreness: somewhat improved
sleep: not much different in either quality and quantity, a bit better which could also be due to the reduced stress as a result of better functionality
IBS: better, though I have some bloating and constipation at night due to the LDN
infections: none so far, either bacterial or viral

Other symptoms

headaches: have got two in the last month, quite normal
migraines: none, though either of the headaches could have been a migraine, hard to say as there was no aura and ibuprofen always helps my migraines
seborrhea: 20-30% better (but now pretty much gone to a new shampoo I started about a week ago)
orthostatic hypotension: hard to say, I hadn't had much of it recently
nausea: haven't had much of it during the treatment, but in the beginning I did get nauseated
sensitivity to smells and such: seems to be still be there
non-allergic food sensitivity: I haven't tested yet
congestion/post-nasal drip: unchanged
lymph node swelling: seems to be better, hard to say because it varies a lot
hair loss: hard to say, hadn't had much of it recently (usually I have a lot of it all the time)
exercise-induced asthma (not anything to do with CFS): improved quite a bit

Other parameters

weight: unchanged, or perhaps a bit decreased due to more activity and exercise (I don't have anything to weigh myself with) - on the other hand I'm hoping I might have regained a tiny bit of muscle mass which would outset the possible weight loss
mood: unchanged (good)
libido: unchanged (normal)
appetite: unchanged (normal), though I sometimes get a bit more hungry in the evening than usual
skin in the face: a bit worse at first, now pretty much the same as before
hair and nails: pretty much the same, hair is perhaps a bit less greasy

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.