DAY ONE - FEBRUARY 10, 2010

LDN was brought to my attention by my sister, she learned of it through a connection she had with the ALS Association in Oregon.

To increase your knowledge about LDN and the many medical problems it has been reported as having beneficial results for, go to:   http://www.ldninfo.org/index.htm#What_is_low_dose_naltrexone

Finding a physician in Northwest Washington that knew about it was a challenge. Thanks to the Internet, and a flood of email's I sent out, a lady in Eastern Canada provided a list of about 20 Dr.'s in Washington that might be of some help. From that list I selected one to contact and she, Dr. Elissa Mullen, ND, in West Seattle, not only knew about LDN and uses it herself proactively, AND does her own compounding which saves having to find a pharmacy that does it. She can be found at: Seattle Wellness Programs


I'll be posting to this blog on bi-weekly basis with notes on things I notice about changes in my symptoms. This will be as much as for my own recollections as it is for Dr. Mullen to follow my progress.  The prescription is not only low dose, but low cost as well. A months supply is about $30. Considering what big Pharma is doing to prices for life critical medications, this is a bargain by any standard.

SHORT BACKGROUND

My symptoms first showed up around the spring of 2007.  I wasn't aware of anything unusual, but a business associate commented that it sounded like I was drunk on a couple of mid-day phone conversations we had. Made me wonder if he had something wrong with his hearing.  Months later I began to notice a hoarseness to my voice. Over the next year my voice got progressively worse and speech became more slurred. By Spring of 2008 swallowing liquids was beginning to be difficult... it would go up my nose instead of down my throat. Throat Cancer was on my mind because of these symptom... so I stopped smoking.  By fall  of 2008 I decided to go in for a Dr.'s opinion. After many tests, and further decreases in my ability to swallow liquids when sipping from a glass, have to use a straw now,  and a voice that has turned into something like you expect to hear out of Chewbakka the Wookie in Star Wars... I learned what ALS was.

THE FUTURE

In the long run all I want to do is stop the slow progression of symptoms. That is what LDN is reportedly good for. But since the drug companies can't make windfall profits from it, they don't want to do any formal studies, and it doesn't bother me that almost all information about its beneficial effects at this time are anecdotal.

I've also been taking; Glutathione for about 4 months and thought that it might be helping, not so sure now but will continue, and R-Lipoic Acid for about a month.

Symptoms are really hard to identify in early stages, for example, how do you decide if something like stubbing your toe is an increase in symptoms, or not, since I can go back in my memory many years and remember some heroic toe stubbing incidents. In the same way, the subtlety of the changes in my voice have not allowed me to define any one moment in time when I noticed a change for the worse. Was it just a sore throat or a new symptom?  Instead of definable moments in time that made me think I was not well, it feels like a long slow motion slide down an infinitely long incline, realizing only by looking back every once in a while how far you've slid in four or five months.

More in a couple of weeks.