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Test Positive, but told by doctor to not be infected.

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Posted 10/6/2011 7:19 AM (GMT 0)
Hello again everyone. I posted before about my sister, who was tested for Lyme twice and showed up positive from an antibody test. They referred her to an Infectious Disease Specialist, though, and that doctor said she almost certainly does NOT have Lyme. She said it was because my sister only showed one 'band' as positive and that the CDC requires a certain amount to be considered infected. I read elsewhere that many Lyme doctors disagree with that statement, and that they also suggest getting other bands tested that typical doctors don't check.

So my sister is thinking of seeing a Lyme doctor, but she is still sort of confused. Is it common to have only one band show as positive and yet still have Lyme? She just wants to rule this illness out, because otherwise her various health problems could be something to do with mental issues. (She's depressed and takes Ativan for anxiety.)
Posted 10/6/2011 11:34 AM (GMT 0)
It is very possible to have one band or no bands for that matter and still have lyme. My husband had no bands and tested positive through Igenex. The lyme controversy is so great. The tests are so unreliable. Can I ask what band showed up? It is imperative that your sister get to an LLMD. They will give you a clearer idea and diagnosis of what they believe the problem may be. Did she test positive on an elisa because she wouldn't test positive on a western blot for just one band.

An infectious disease dr.'s lyme diagnosis and treatment protocol differed greatly from a lyme expert. The CDC specifically says that lyme must be a clinical diagnosis. The current lab guidelines are for surveillance purposes only, which means they use them to see what is showing up where.

Very hard to understand I know but please, get your sister to an LLMD. you will be so glad you did. My best to you both.
Posted 10/6/2011 11:49 AM (GMT 0)
Yes, definitely have her see an LLMD. I am one of the lucky ones who got strong positives on both the ELISA and Western Blot, but many don't. Those pesky spirochetes! Seeing an LLMD has been one of the best things I've done for myself since getting my diagnosis.
Posted 10/6/2011 12:04 PM (GMT 0)
I strongly ditto springsjean's reply to you. 

She is absolutely correct in her explanation and her advice for your sister to see an LLMD....and ASAP.

I am curious also as to what band showed positive on her blood test.

They all mean different things.  My brother-in law only showed a positive on band 23 for example (very important band) ....and I only have tested positive for band 41.  Both of us have been clinically diagnosed with Lyme due to symptoms and the positive bands we have help support that.

As Britgirl said:  seeing an LLMD has been one of the best things she's done.  

 

Posted 10/6/2011 7:29 PM (GMT 0)
Thanks so much everyone!

It really sucks that this controversy and rift exists between Lyme specialists, Lyme patients, and the CDC and official medical stance. Because of this, my sister has to go to an out of area provider--meaning she'll have to pay for the Lyme doctor completely out of pocket.

She is the wife of a retired air force vet, and her insurance only covers doctors provided by the air force base. So she was basically getting treated by the government for something another arm of the government says doesn't really exist in a chronic form--or doesn't need to be extensively tested for. So hopefully going to this Lyme doctor will get it cleared up once and for all.
Posted 10/6/2011 9:19 PM (GMT 0)
Hi again, Misterkatamari!
I think it would be a good idea to direct your sister to this site: www.drjoneskids.com/ and have her go down to "Military Lyme" and click on that. It has a lot of info for those who are in the military and are trying to seek medical attention for TBI's.
Posted 10/7/2011 2:55 AM (GMT 0)
It most certainly is common to have a negative test and still have lyme.

I tested negative while having a bullseye rash! The rash itself is definitive for lyme. I later tested positive thru Igenex lab.
Posted 10/7/2011 7:14 AM (GMT 0)

scorp10 said...
It most certainly is common to have a negative test and still have lyme.

I tested negative while having a bullseye rash! The rash itself is definitive for lyme. I later tested positive thru Igenex lab.

Wow that's very telling!

I'm reading on Igenex stuff now, and even that is steeped in controversy. This whole mess just seems like it could be completely avoided. Thanks again for the replies and the resources!
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