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.

Two months

Two months now, not much to add to my one-month update. I still can't walk uphill well at all and I still have quite a bit of cognitive issues despite the addition of piracetam, but many things I just couldn't have done before I can do now. I even did some laundry last week, one of the most killer activities. A few days ago I vacuumed my apartment though it required taking breaks. I haven't taken a single ibuprofen tablet in the last month. I've had two moderate headaches but magnesium has taken care of them. No lymphadenopathy for ages, and urticaria has been almost non-existent.

Muscle tension has bothered me quite a bit, I think mostly due to several nights of poor sleep, and carrying too much stuff. IBS has been nasty for a few days now and I've had some nausea, which has always been a very sporadic symptom for me. I haven't done very well the last two weeks, but it hasn't been about fatigue, but tiredness/"eye fatigue" and other things. Today I was feeling super tired to the point of feeling fluish, but two ginseng tablets alleviated it somewhat. I'm also having problems with temperature regulation, which doesn't feel like feverish chills and sweats, but as if the ambient temperature just changed even if it doesn't. I wish I didn't have so many different symptoms.

The other Finnish girl who was on LDN stopped it after a month or so because it didn't seem to be working for her. I do wish she'd have gone on a bit longer, but of course nothing works for everyone. But my Canadian friend is now sure that the LDN is working for him. He has results pretty similar to my own, eg. if he exercises some muscle group only the muscles get fatigued instead of getting general killer fatigue, which is just like my own experience. He says his doctor is considering trying it for other CFS patients, which would be awesome.

I'm going to see if I could get rid of the acetyl-L-carnitine (it's the most expensive supplement I'm taking) which I've reduced from 1 g to 500 mg a day, and gingko biloba, but I'm not sure if I can pull it off. I'm taking far too many things and I'd really like to try large-dose N-acetyl-cysteine for eg. my chronic congestion.

Purple, and fine

Today hasn't been my best day. But I'm not let down because I know that tomorrow will most likely be better. And even today has been better than most days I had before LDN. The piracetam made me a bit lethargic and slightly irritable for the first days, but it's working quite well now. I'm hoping that in a few months my brain will be a bit more functional when the piracetam reaches its full efficacy.

I have something purple and wonderful cooking up on the stove (red cabbage stew, pretty much the same thing as the traditional Finnish cabbage casserole). It's one of my favorite foods, but I haven't been able to cook it for a few years now, because grating the cabbage was too exhausting. Now I can.

Even if I will never get better than this, I can deal with it. I'm still disabled, but my quality of life is way better - getting your health even 50% better can make a much bigger difference in quality of life. And life is very good now. Now I can make it better for other people, too. I'm determined to get my friend out of wheelchair, with LDN and/or something else. And another good friend of mine could use a prescription as well. I probably won't be posting much here any more, except for the LDN miracles I witness, and perhaps an update on myself every once in a while.

Piracetam

I got a prescription for piracetam yesterday. It's a medication that I've wanted for several years now due to my cognitive problems, which haven't been relieved by LDN as much as I'd have wished, and luckily my doctor thought it was alright even though he had no prior knowledge about the drug.

I've taken four 1200 mg tablets yesterday and today as an "attack dose" and after that I'll probably take 2-3 tablets a day. Hard to judge about brainfog, but the circulation in my limbs feels better already.

So I'm taking a hefty number of pills and such at the moment, even after I dropped carnosine and astragalus, both of which I had been taking twice a day. Each amount is for the single pill, eg. I take 3 1.5 mg pills of LDN at once for a total of 4.5 mg a day.

• piracetam 2-3x1 (1200 mg)
  
• LDN 1x3 (1.5mg)
  
• bromelain and quercetin 3x1 (125 mg/250 mg) (I will probably drop this as soon as it ends, it doesn't seem to work)
  
• glucosamine 3x1 (500 mg)
  
• sublingual B12 and folic acid 1x (1 mg/400 ug)
  
• acetyl-L-carnitine 2x1 (500 mg)
  
• R lipoic acid 1x (100 mg)
  
• ubiquinone (coenzyme Q10) 1x (100 mg)
  
• siberian ginseng 1x (1,000 mg)
  
• probiotics 1x
  
• gingko biloba 3x20 drops (hopefully the piracetam will let me drop this, I've been taking it for three years and it's the most inconvenient supplement, even though it works well)
  
• oil of oregano 2x2 drops
  
• magnesium citrate 1x (sometimes up to 3x1) (100 mg)
  
• vitamin C 1x (500 mg)
  
• a multi vitamin with essential minerals included 1x
  
• vitamin D about 30 ug a day (not every day, but it averages to that amount)

That works out to a total of 22 pills/capsules and a bunch of drops. But it has been similar in the past, eg. last autumn when I was taking many things I currently do and eg. prednisone, omeprazole, vitamin B complex, glutamine, astragalus and a total of five pills of beta carotene a day (the latter was a short trial recommended by some doctor in eMedicine, didn't work), then I averaged 22 as well. :-P

Female stuff

Those with XY chromosomes can skip this post.

I got my first period on LDN (yeah, I'm a modern woman and don't keep them every month) and I had been a bit wary, as some people with MS had said that LDN had made their periods heavier. But I assumed that it was probably a normalizing effect - a severely ill person would often have light or no periods, and anything that made them more healthy would affect that. I guess I might have been right. Definitely no change for the worse, perhaps even a slight change for the better (from a fairly normal base level).

(Damn Blogger being buggy again and inserting line breaks where there are none, can't get rid of them in either HTML mode or the normal text compose mode.)

Orkut and writing

I've set up an LDN community on Orkut: http://www.orkut.com/Community.aspx?cmm=29921205. Note that the link doesn't work unless you're an Orkut member. And it's not worth it to join just for this. But in case anyone reading this is an Orkut member and interested in LDN... I've joined just about all Orkut communities for autoimmune illnesses, cancer and AIDS to spread the word.

On a sidenote, in the past 24 hours or so, I've written about four pages of a short story (the longest short story I've written since 1999 I think and the longest piece of fiction I've written since I finished my last novel in 2002 or 2003). It's strange to see it come out so easily.

I tried participating in "NaPoWriMo", a project where people try to write a poem a day for the whole of April. I failed miserably, I realized that I still have way too much cognitive dysfunction for that. And my brainfog doesn't really agree with writing articles or essays. But a certain kind of prose seems to be possible. It's thanks to LDN, but I also think due to the vitamin B12 lozenges. I haven't slept too well the past three nights, but the B12 seems to keep me more alert. Apparently it even helps many healthy people.

Now that my cognitive dysfunction is somewhat better it has helped me realize how bad it really was, and how bad it really is. I guess I've been somewhat in denial about it. I don't know how I got by at all, when my brainfog still seems to affect everyday living a lot.

My spleen or something nearby it seems to be slightly sore. I hope it's nothing of concern. My other lymph nodes are unusually un-sore, so I guess it's just a muscle cramp or something. Wildly theoretically it could be a broken rib, but I haven't done anything that could have broken a rib.

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