Four years on LDN

Four years today. How time flies, eh? The LDN for CFS/ME "scene" is quite different now than when I started. At the time I didn't know anyone else who was taking it and most CFS/ME patients had never heard of it. Now probably half of the people I know are taking it or at least have tried it, including dozens of Finns (I recently wrote this article, but after writing it there have been many new cases). My doctor is prescribing it for almost all of his CFS/ME patients now. I'll have to pressure him about writing a case series or at least a letter to a medical journal soon - trust me, I have tried that before and he always promises to do it some time.

I am now living in the Netherlands. I had some trouble finding a doctor to prescribe me more piracetam and LDN, but finally succeeded some time ago. Turns out the pharmacy even stocks LDN tablets! The downside is that they're very expensive - over 40 euros a month, which is more than twice the Finnish price. My insurance did not want to cover it (in Finland it was covered 42%, though of course not any longer, but it's still way cheaper). So it looks like I will still be getting my LDN from Finland, after all. Sigh.

After years on 4.5 mg LDN capsules, now that I had these 1.5 mg tablets I decided to try dosing them twice a day, as my doctor usually prescribes it these days, 1.5 mg in the morning and 3 mg in the evening. The first day I felt better than usual, but after that I have noticed no difference, so I'll be switching back to 4.5 mg at bedtime soon.

I am still struggling with hypopituitarism. In Finland I was written a referral to an endocrinologist, but never got to see one (because Finnish "health" "care" is wonderful like that). Here I got to see one, once, but she was clueless, so it was pretty much useless. My current hormonal supplements include taking hydrocortisone in four doses, 7-2-2-2 mg at about 8 AM, 3-4 PM, bedtime and 4-6 AM, and 75 mcg thyroxin (which has made very little difference, though I should probably be taking a little more) and 15 mg DHEA.

Anyway, I shouldn't be complaining, as the last year has been incredible. Besides my CFS/ME book being published in Finnish, I've signed three(!) book deals, one of which is a medical book for which I also got a grant and one is my first novel, also about chronic illness/disability, which will be out in a few weeks. I was a speaker at two LDN conferences, where I met some really wonderful people. I got married and moved to the country where I want to live. I am very grateful I can do this.

One interesting thing that happened lately is that my new doctor diagnosed me with whiplash (vertebrae C5 and C7, I think, were misaligned). I have never been in a car accident nor do I have any neck symptoms and only quite rarely headaches, which I have connected with my TMJ problems, but he said I may have had it since childhood. He realigned the vertebrae and I felt quite terrible for a week, but after that I have felt slightly better. No significant improvement though, but it was worth a try.

I am currently experimenting with some methylation boosting supplements, but it's difficult to judge the effects yet. So far it seems like 400 mcg megafolin makes me sleep too deep (had to discontinue it as couldn't afford that at the time), ~375 mg betaine/TMG makes me extremely sleepy during the day (-"-), 2 mg methyl-B12 makes me feel slightly better, but causes slight nausea and early morning sleeping problems.

Three years later

Hard to believe I've been on LDN three years today. I can still remember the excitement of getting the prescription, and of course the excitement of getting better. I can't really remember what it was like being as sick as I was before starting LDN - I remember it on "fact-like basis", like "If I did that, the consequences were like this" but not really what it was like. And that's good. Hopefully I will never be that ill again.

In the last year I've deteriorated quite a bit due to my hypopituitarism getting a lot worse. I am likely severely deficient in all hormones now, but I can't get see an endocrinologist, get tested or have treatment for most of the deficiencies. Especially the growth hormone deficiency has been quite gruesome (I look like a creature from a horror movie these days), and the adrenal insufficiency has almost ended me up in the hospital about 100 times.

It's hard to know what's hypopituitarism and what's CFS/ME, but I probably wouldn't suffer much at all from CFS/ME if the hormonal deficiencies were fixed, especially since I started tyrosine and inosine last year. Luckily LDN still works well.

The manuscript of the second Finnish version of my CFS/ME/fibromyalgia treatment book has been finished and has finally found a publisher, a Finnish academic publisher, and will come out later this year. Possibly as early as May, but it might take until the autumn. I guess I should also mention that I will be speaking at the LDN conference in Scotland in April.

P.S. It makes me immensely sad (and kind of angry too) to see people with very well treatable illnesses saying they will never get better. That they don't just believe it, that they "know it".