LymeNet Flash: Brought up Lyme to my MD today

This is topic Brought up Lyme to my MD today in forum Medical Questions at LymeNet Flash.

To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/81063

Posted by Juliel833 (Member # 20259) on :

I saw my MD and mentioned Lyme as a possible cause . It's hard to say how much he knows about it, but he is going to run an initial test and they do send it out to Igenex. He asked where I went to school, and I told him Oneonta (southern tier NY). He said that area is endemic, so it is a possibility.

I mentioned my that I've read the ELISA test isn't very accurate...he said its the most sensitive test so they use that first and then would do a western blot to confirm.

Very curious to see the results. It would be nice to know what is ailing me so I can start on the road to recovery after so many years of being sick.

Posted by Geneal (Member # 10375) on :

The specificity of the Elisa isn't that great.

The "snap" test they run on dogs is better.

Oh well. Negative Elisa means nothing.

So, tell him to skip the Elisa and do the Western Blot.

Or do both. Just don't let him "talk" you out of the Western Blot.

You really need to be looking for a LLMD in the meantime.

Hugs,

Geneal

Posted by dmc (Member # 5102) on :

Geneal is correct. Maybe printing this from the International Lyme and Associated Diseases Society website will make you more certain with the info you've "heard".

http://www.ilads.org/basic.html

good luck

Posted by adamm (Member # 11910) on :

Unfortunately, the medical community's been lied to about Lyme by the powers-that-be since its emergence, and, as a result, most practitioners have it all wrong. The fact that your doc's relying on these tests to make his diagnosis means that he doesn't know enough to get you well if you have it. The ELISA is worthless, and even the best test available to us are only about 70% sensitive (there's a much better one that's been withheld from us--detailed in the "patents" section of the third website to which I provide a link).

For the real scoop on tick-borne disease, you should check out

lyme-info.net
ilads.org
lymecryme.com and
lyme-rage.info

Good luck,
Adam

Posted by Leelee (Member # 19112) on :

I hope he will do a Western Blot through Igenex.

I tested negative on an ELISA test and a Western Blot by Lab Corp (or Quest, I can't remember which). When I went to an LLMD and he sent my blood to Igenex I had several positive Lyme bands.

Best of luck to you. I hope you get the help you need.

Posted by Dekrator48 (Member # 18239) on :

Go to Dr B's paper in the link below...see page 7.."Diagnosing Later Disease".

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Read what a real lyme expert has to say about the ELISA and western blot.

Print out this paper if you can and take it to your Dr.

You should read it thoroughly and so should he.

My ELISA was Indetermintate.

Many, many people had a negative Elisa, yet had a significant western blot.

Your Dr probably will not run the western blot if your ELISA is negative. He will instead tell you that you don't have lyme.

Don't let that happen.

Even if an Igenex western blot is CDC negative and Igenex negative, you can have lyme....those are just reporting criteria.

Read the part titled "Western blots" on page 7 of Dr B's paper also.

You should assert yourself and tell him that Dr B says the ELISA is not sensitive enough and he recommends against using it.

Insist on a western blot from Igenex.

I hope you get answers soon.

Posted by Kreynolds (Member # 15117) on :

I agree with all the above! The Elisa test is garbage!

I always demand a WB and never get "tricked" into taking an Elisa test.

At the end of the day, the testing itself just isn't there....

Lyme should be treated more on a symptomatic/clinical diagnosis if all else fails.

In this country there are few that follow that guideline....