Re: Lyme, CMT, PN

[Guest guest]

Dear ,

Lyme affects the autoimmune system. CMT is a disorder of the Peripheral

Nervous System, also there are many other 'neuropathies'. There is a

easily accessible article on PN in the BMJ Feb. 23, 2002 issue by

Neurology and this might shed more light for you on PN. You may

or may not have been tested for CMT and other PN diseases. Just go to

http://www.BMJ.com to find the Feb. issue. Now, in it there IS mention

of CIDP. This is a demylelinating polyradiculoneropathy and it is

treatable, responding to corticosterods, but also intravenous

immunoglobin, plasma exchange and some immunosuppresant drugs.

There is a book " Numb Toes, Aching Soles " by Senneff that is good

for understanting general peripheral neuropathy. It has newer treatments

in the back of it. Unfortunately, my book is on loan, so I am unable to

check for you.

Over 20 years ago, I checked myself into a hospitalized 4 day battery of

every test in the book; even tho I had the CMT diagnosis already several

times, new tests were out. So, I had all the tests; everything was

negative for everything. Recently, because I was in an experimental drug

trial again, I was tested for RA. Also negative. 2 years ago I had

another NCV/EMG, which confounds docs as I am well in the normal range.

It seems the old fashioned way in which I was first diagnosed with CMT

has been the best: I was a kid and walked up and down barefoot many

times in the hallway of the Drs. office.

So, keep going after a diagnosis, if it is right for you, - to PINPOINT

IT - then go from there. I have never heard of this test you mention -

go to 'bookmarks' then to 'quackwatch' and see if it is there. I would

be interested in learning just what it is myself. If you are skeptical,

perhaps that is good; when I feel like that on new therapies, meds, or

treatments it makes me work harder at fully understanding exactly the

treatment. I also get the opinion of my neurologist too; maybe one

other.

I will tell you at various times in my life I have needed intravenous

antibiotic therapy - to knock out infections; didn't do anything for my

CMT except I got more rest and was 'trapped' in a hosp, so my energy

level was purposely cut in half just because I wasn't allowed up and my

life is pretty active.

You might contact the neuropathy-trust.org. for info too.

~ Gretchen

cindy kruser wrote:

> namely a Bi-Digital O-Ring

> Test, I am intrigued by this idea, but more

> skeptical than anything else.