2 month progress on LDN and interesting conversation piece..

A board to discuss Low Dose Naltrexone (LDN) as a treatment for Multiple Sclerosis

2 month progress on LDN and interesting conversation piece..

Postby CCmom » Thu Aug 26, 2004 12:54 pm

We had the two month follow up consultation with Dr. Scott for my son's LDN. He has been taking 3 mg and doing really well with it, and Dr. Scott elected not to increase it at this time. I suppose we are going with the "if it ain't broke, don't fix it" theory my 90 year old grandma lives by! I agreed with this, because in case my son develops a "tolerance" to it later on down the line, this still leaves us with somewhere to go, you know? (This is not a scientific theory, it's a "Kim" theory, so don't even ask!)

Anyway, the conversation with Dr. Scott was quite involved and lengthy. (I only wish some of the neuros we have sat down with face to face devoted that much time to us!) Ultimately, he wants new testing done on my son for Lyme - he does not believe he has MS. Trouble is, the new testing is still in the "research" stage, and I am trying to make a decision on this. It is done by Bowen Research & Training Institute in Palm Harbor, Florida. From what I have read, there is a high positive result ratio. This is what I have thought my son had from the start of all of this, since he was covered in tick and mosquito bites when he became ill. There are also some really interesting theories on how Lyme is spread coming about. He wasn't tested at the onset, but a Western Blot was done 8 months later at my insistence. It was negative.

Just wondered if anyone had heard of the new testing or knew anyone who had participated in the research program. Any words of wisdom would be appreciated! Have a great week!

Kim
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Postby Shayk » Fri Aug 27, 2004 8:36 pm

Kim

Thanks for the update on your son.

I do not know about a test for Lyme Disease that is being researched, but I do know that the Washington Post had an article last summer,

Amy Tan, Ticked Off About Lyme; The Novelist Under Treatment for Late-Stage Lyme Disease, Could Never Have Conceived How Hard It Would Be to Get a Diagnosis--or How Surreal the Symptoms Could Be

dateline August 5, 2003. I thought I'd saved a copy but apparently not. :(

My recollection (always questionable :lol: ) is that it detailed different tests with a focus on whatever was not typically done.

Hopefully you can find it if you go to www.washingtonpost.com and search the Archives for Lyme Disease. I remember it caught my eye when I was in the diagnostic "rule out" stage and Lyme Disease was under consideration. It might be worth the $2.95 to purchase a copy.

Take care

Sharon
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Postby CCmom » Mon Aug 30, 2004 5:34 am

Thanks, Sharon. I got the info on the testing, and I'm more confused than ever. It is in the research stage, with an amazing number of "positive" results in those tested. Now I really don't know what to do, you know? I don't want a diagnosis from my son that I will feel just as skeptical about as the one that he has...

Thank you for the info on the article, I will certainly look it up. Hope your day is going well!

Kim
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