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Old 03-02-2007, 04:04 PM #2 (permalink)
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Join Date: 2006
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Join Date: 2006
City: Elbert
State: Colorado
Country: US
Diagnosed: 05/2005
Posts: 2
749 is on a distinguished road
Default Lyme Disease and ALS

Hi Lonny,

I can give you some first hand information about RMCDS because I have been on their therapy since December of 2006.

But I need to give you a bit of background on me. I have been diagnosed with PMA, which is similar to ALS but without any upper motor neuron involvement (to date I’ve had no brisk reflexes, spasticity, Babinski sign). There is an excellent description of PMA at the beginning of the PMA section on this web site.

I decided to work with RMCDS because along with my ALS/PMA symptoms I had constant headaches, whole body muscle aches, and most of the joints in my body ached constantly too. Within a month of starting on ceftriaxone IV, my headaches, muscle aches, and joint aches went away and have not returned. Elimination of these symptoms was like a new lease on life. HOWEVER, continuing IV antibiotic therapy has done nothing to slow the progress of my ALS symptoms. A year ago I was still able to walk short distances (100 ft. or so) with the aid of a cane, but now I am mostly confined to the use of a wheelchair (I can still do 10 to 20 steps with a wheeled walker, but that’s it).

I don’t want to give any false hopes here. My personal belief is that RMCDS is not the “cure all” for PALS. However, I do believe that there is some percentage of people (probably fairly small) that can have the progression of their ALS (as a result of Lyme or some other infection/s) symptoms reversed, stopped, or slowed, provide that Dx and start of therapy begin early on (before gross loss of neurons and muscle).

Ok, so if I’m still loosing ground on the ALS/PMA side, why do I continue with the antibiotic therapy? I’m to the point where I have no false hopes about getting the train stopped, but I want to continue to contribute (as a guinea pig) in RMCDS’s efforts to figure out what role/impact IV antibiotics truly play.

I hope that this has helped,

Edwin

PS: Here is a URL to a pdf of slides used by RMCDS when they gave a presentation at ILADS (International Lyme & Associated Diseases Society) conference last October. It is posted on Charles McPhee’s (The Dream Doctor?) website. McPhee has been diagnosed with ALS.
http://www.dreamdoctor.com/radio/ALS%20and%20Lyme.pdf
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