Tuesday, April 30, 2013


I have tried many many supplements, too many to remember. But here are some of them... co-enzyme Q10, Acetyl L-Carnitine, vitamin B12, Alpha Lipoic Acid, Probiotics, D-Ribose, L-Glutamine, N-acetyl glucosamine, Vitamin C, Vitamin D, GABA, L-Tryptophan, Pantothenic acid, Melatonin, homeopathic remedies, VegEPA fish oil, SAM-e, DHEA, Evening Primrose oil, Vitamin B-Complex,  NADH, Taurine, Tyrosine, 5-HTP and Magnesium.

The only things that helped me at all have been Magnesium, the Pantothenic acid (vitamin B5), the B-Complex and the SAM-e, all of which I am still taking.

What about medications? I have taken anti-depressants on a number of occasions, mainly for sleep, at times for depression. I came off the last anti-depressant that I was taking six months ago. The SAM-e is an effective replacement.

Other drugs I have tried include Hydrocortisone, Midon, Provigil, Low dose naltrexone, thyroid hormones and fludrocortisone. The hydrocortisone helped a little, but did cause some anxiety and was awkward when I got a cold as I had to increase the dose. The LDN did seem to give me a little more stamina, but added to added sleepiness, so I stopped it. The fludrocortisone does help a little, with staying upright and with keeping going, but only about 5%. Nothing else has ever done anything else useful for me.

And that's it. Fifteen years worth of pill popping and a lot of half full supplement bottles in my cabinet.  My daily regimen of fludrocortisone, magnesium, B-vitamins, and SAM-e keeps me upright, just about.

I have also - though not for quite a while - tried those therapies and treatments farther out on the spectrum of available options. Reiki, reflexology, homeopathy, acupuncture, chiropractic, the usual gamut of 'alternative' approaches. For me they have been nothing more than placebo.

It is clear to me that if these therapies have any effect, it is simply because they are usually in a relaxing space, with a sympathetic person who will listen to you and take your complaints seriously.

In my experience, if there is to be any solution to this whole damn chronic situation, it has to come from the mainstream medical direction. And that involves research, and it also involves patients taking some responsibility for their own recovery. To do that you need information, and contact with other sufferers. Hence this blog I have started.

Sunday, April 28, 2013


I have had Chronic Fatigue Syndrome for fifteen years now. How it started is tedious and depressing and probably something I will go into at some stage, but not quite now. What is important is that it has been fifteen years, and in that time I have been through a certain amount that may benefit other people.

I have been through a lot of therapies, doctors, supplements, medications and treatments, and am about to embark on another attempt to get some improvement in my situation. I write a number of blogs, for various things, though nothing as yet on CFS or ME. So I thought, now is a good time to put out there some of my experiences that may be of use to people in similar situations.

I imagine that a large number of CFS sufferers are worse off than me. I would estimate that I am operating at about 70% capacity, I work part time, have some kind of social life, travel occasionally. Many people I know would not even know that I have CFS.

I also don't really have great ups and downs. My state of health, as long as I avoid major relapses, is fairly steady and predictable, again something I know a lot of people with CFS can't say. So I'm aware that some sufferers may not be able to identify with me totally.

Yet, like everyone, my life is very limited. I have no hope of owning a house in the future, or of having a real career because of my lack of energy. And having a relationship, or the prospect of having children, is complicated by my whole health situation. Most things are a struggle, and it often feels like an achievement just to survive.

The things that I have found that help are small in number. Magnesium is a key. I was shown to have a deficiency six or seven years ago, I started off with injections but when I finally moved on to the oral kind things did improve. I found I slept better, and had more stamina. I am still taking it today, and wouldn't be without it.

Another is high strength B-vitamins. I take a B-Complex that contains 50mg of each B vitamins once a day. They are pretty much the only supplements I have taken that have had any effect.

In further posts I will give more background and detail to my experiences.