Adrienne -mito and congenital Lyme Disease

[Guest guest]

Hi Adrienne. Thanks so much for your kind words. Yes, as know

YOU know, " getting that dx " is WONDERFUL! I was so happy to

read your post when you had gotten yours.

The doc who finaly diagnosed me is " just " my family doc, who

knows me and went to the umdf site and read a lot after I

presented her with all my research and past test results. Turns

out that " my kind " of mito is diagnosed with some of the same

tests as the more " common " forms of mito, BUT ALSO quite a

few DIFFERENT tests . I discovered on my own that I already

HAD many of the tests needed to help dx (once I tranlated them

from med-speak to English) that had been ordered last summer

by my " once a year " Lyme doc in NY.

I didn't know there was a specific dx protocol until a few weeks

ago when I FINALLY made contact with one of " VERY HARD to

find " thiamine- responsive PDH familiies, who have 2 children

treated at the Mayo clinic and the mom was able to give me the

dx protocol.

Thanks, I will keep Drs. Green and Levy in mind.

Adrienne, I was in volunteer Lyme support for 10 years as a

clearing house for Lyme info and resources. Your

rheumatologist sounds like one SMART cookie in regards to

Lyme (most are not)!!!! The congenital Lyme scenario she

presented sounds TOTALLY posible to me. My family doc (also

one smart cookie and very open minded ) treats a lot of Lyme

patients ('cause I send them to her) and SHE thinks that it's

totally possble that the Lyme infection acts as a trigger to those

who are genetically succeptable to mito disorders and wil be

pursuing mito now with a few of her patients. Congental Lyme is

nasty stuff, though many of the children with it can survive, they

rarely thrive.

Mainstream Lyme tests are thought to be EXTREMELY

unreliable and if the person has been on abx, or has a

compromised immune system, thay are even MORE unreliable.

People (including many doc) just don't realise that fact, even

though the Center for Disease Control officially DOES. The docs

in the trenches who treat A LOT of Lyme patients know this and

there is a non-mainstream PCR test available now that is being

used. Unfortunately most docs don't know about it and many

insurance companies will not pay for it.

If you need more Lyme info, I have a lot on my data base. Please

feel free to e-mail me if you need any. Right now things are a bit

busy at home, so it might take a few days, but I will answer.

Best Wishes,

Anita