Re: Question of what constitutes a definitive diagnosis

[Guest guest]

Well, I can only speak for myself and what my dr. is doing. I am in MA and my dr

is an immunologist, not a LLMD. He is treating me for Lyme based on clinical

observation, labs ruling out EVERYTHING else, reaction to antibiotics(storng

herx, better on, as soon as I go off symptoms return) and labs that would

indicate a Lyme infection(CD57, etc) I do not have a pos. Western Blot, though I

haven't tested again in years. I am choosing not to for a couple reasons...

-My Dr is completey open minded, reads everything I bring him, LISTENS to me and

respects me, and will do his own research.

-I have BCBS and they are notorious for 'flagging' patients files who have

chronic illnesses like Lyme and will refuse coverage

My 'diagnosis' is listed as a disregulated immune system. So far I have been

able to run with that, and they don't question it. I am not above fighting with

the insurance co. though if it comes to that.

I know I have Lyme, I know my Dr. has Lyme and as long as I get treated I could

care less what my med. records say. I don't need the official 'label', yk? *IF*

there were changes in how things were being recorded, less issues with Dr's

getting in trouble, etc then MAYBE I would get re-tested. For now, its more

important to me to just get well.

~

>

> I have just started reading the board again. I have a question about what

constitutes a definitive diagnosis that Lyme Disease is still present in

someone. What evidence is necessary to protect our physicians?

>

> 1) By symptoms alone? (As I believe the CDC recommends.)

>

> 2) By a positive ELISA test by itself?

>

> 3) By positive Western Blot test by itself?

>

> 4) By a positive PCR test based on a skin biopsy (the current most-reliable

test)

>

> 5) By a positive ELISA test confirmed by a positive Western Blot test?

>

> 6) By a positive CD-57 test confirmed by symptoms?

>

> 7) By the presence of Lyme Disease-specific proteins as detected via a spinal

tap test (or a later blood test based on the spinal tap research results)? (See

http://www.plosone.org/article/info:doi/10.1371/journal.pone.0017287 )

>

> 8) IDSA, the CDC, and the insurance companies have no intention of accepting

any evidence at all.

>