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.
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Hi Dick - I don't know if you remember me, I crewed under you on the Quest many years ago. I just wanted to humbly suggest that you take some time out to read Edgar Cayce's readings on ALS and similar nervous system disorders. Consistently, he prescribes gold, and based on what research I've done and what's available, I think he is really on to something there. There is one well-documented case of a patient who reversed symptoms completely, based on an Edgar Cayce reading. The common element I find is gold and there is a lot of anecdotal and some more stringent evidence that it does play a major role in the health of and regeneration of nerve cells.
ReplyDeleteHere is wishing you all the best,
-Bob LaCasse (former deckhand aboard the Quest)
As a sign of gratitude for how my husband was saved from the dreaded ALS, i decided to reach out to those still suffering from this.
ReplyDeleteMy husband was diagnosed of ALS in 2013 and it was really tough and heartbreaking for me because he was my all and the symptoms were terrible, he had difficulty swallowing, all his joints were dead and that made him immobile to mention but a few. we tried various therapies prescribed by our neurologist but none could cure him. I searched for a cure and i saw a testimony by someone who was cured and he left the contact of the doctor who had the cure in 2015. I never imagined ALS has a cure not until i contacted him and he assured me my husband will be fine. I got the herbal medication he recommended and my husband used it and in three months he was fully okay even up till this moment he is so full of life. ALS has a cure and it is a herbal cure contact the doctor for more info on josephalberteo@gmail.com on how to get the medication. Thanks for reading my story.