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

Something new that might work?

I got my new supplements today, sublingual B12 (and folic acid) lozenges, quercetin & bromelain and glucosamine. I started the first two today as I concluded they'd probably have different effects so I'd know which one was helping (if they do). I was very tired and felt zombie-like because I had slept poorly, but after dissolving the lozenge in my mouth I started to feel much less tired and much more alert and lucid. It could be placebo, it could be a coincidence, but I haven't crashed like tends to happen with sleep deprivation. I'm really hoping it's for real.

An online friend of mine got an LDN prescription today because he was apparently inspired by my positive experience. I hope he won't be let down, I really wish that he will get better. Several other CFS people (and a few with autoimmune illnesses) I know are wanting to try it as well, but for many of them the biggest problem would be finding a doctor who's open to the idea.

I have my birthday tomorrow. I already got the present a few weeks ago though. :->