Friday, March 5, 2010

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".

3 comments:

cinderkeys said...

How long did it take you to get the right dose of LDN, and how long before it started working? Or, how long should a person try it before deciding that it works for some other people, but not him/her?

I know someone who has started it, and so far the bad side effects have reigned.

LazySusan said...

A foremost expert on CFS, Dr. Jacob Teitelbaum, has just put out a new book called Beat Sugar Addiction Now: http://endfatigue.com/. It is written in a simple style and outlines his easy to follow, multi-step plan. He begins by identifying 4 main types of sugar addicts and then outlines a specific plan for each type of addict to follow. He explains how sugar plays into the problems suffered by each kind of addict and goes into detail when clearly and succinctly explaining how to beat the cravings. While Teitelbaum does not provide recipes or meal plans, he does give guidelines for healthy eating and lists of recommended foods as well as the glycemic index for many common foods.This book would probably be helpful not only to people attempting to lose weight, but also to those with illnesses such as Type II Diabetes, Fibromyalgia, and Chronic Fatigue Syndrome, just to name a few. Though Teitelbaum is a medical doctor and is clearly coming from a medical background, he writes in layman's terms and creates a book that will be easily understood by most people.

cinderkeys said...

This is at least the third time I've seen a comment about Teitelbaum's new book -- the previous time was on my own blog. The comment is always under a different name, but the wording is exactly the same.

Please, try a different tactic. I can just about guarantee that anyone who blogs about this kind of thing has already heard of Teitelbaum, and posting the same comment over and over again is crossing the line into spam.