Testing

[CareBayer]

Today I was informed I tested positive on the BORRELIA BURGDORFERI AB test with a result of 1.87 when the standard normal result is >.90. My nurse practioner said it may be a false reading considering my wbc count is up and my o-band levels are not as high as many others who have lyme. She placed me on doxycycline for two weeks to see how I respond and refered me to a infectious disease doctor.

My question is how many of you have had a false positive test? Were you given another test to confirm? Did you have more investigative testing like a lumbar pucture?

If indeed I do have lyme I would have had it for almost two decades without knowing since I was a kid. Would that consider me to have chronic lyme since most of my symptoms are neurological like tremors, numbness, swelling in my hands, parasethia?

I know I may sound like I'm going on and on. I apologize. I just want some answers and know what I'm dealing with. PIus I prefer to talk to people who have hands on knowledge with this disease.

[JackieCalifornia]

Someone more scientifically oriented than I will have to speak to the test results, but the symptoms you describe are not out of the range for Lyme.

Did they test you for any other 'co-infections', that is, other diseases sometimes carried by the Lyme ticks?  The MD you go to may do that.

A lumbar puncture is sometimes done, but I have not read that it produces much usable evidence of Lyme or not.  I don't think everyone gets one, in fact, I think the people who do get them it's because the docs are trying to rule out ailments other than Lyme.  Since you have a diagnosis already, maybe that means no LP.  I never had one, and I'm recalling that most people posting here did not, but that's just a guess.

Do you know which MD you are going to see, or are you allowed to pick which one?  There is a big split in the medical community about Lyme, so this can matter.

Don't apologize -- you are asking the right questions.  Let us know what happens and how you do, okay?  

[CareBayer]

Thanks Jackie. I dont have a dx of anything yet. It's just that one test came out positive and I've been lobbing to have the lyme test performed for many months since all of my other testing has come out negative. At this stage of the game I just want to put a name to what has been going on with me since I have been a medical mystery.

When I see the infectious control disease doctor I plan on asking him are there other co infections associated with ticks (thanks I would have never thought of that). Plus I'm quite sure I will have some additional bloodwork done. I just have to get my game plan up to date.

Due to the nature of my insurance company I dont have choice of who I can see outside of the network. But if lyme is going to be the official dx I will request a consult with a lyme literate dr especially due to my symptoms, timeline and how I respond to the meds.

It kinda feels good just to feel like Im finally getting somewhere and all of this is just not made up in my head. I've had the rashes. Not bullseye though and bells palsey a couple of months after. Now after almost two decades all these symptoms appear out of nowhere with no relief. Just some days are better than others. Im really stuggling with the fatigue right now. Whoo wee....

[patsy10]

Did you have the western blot as a confirmatory test?

It is hard to get a positive test even if lyme is present.  It's interesting that even when we do get positive test results they call them false positives.  False NEGATIVES are very common.  False POSITIVES are not so common.

There is plenty of lyme in OH.  I have pulled several embedded ticks off.  I have had bullseye rashes more than once.

[wonko]

Chronic Lyme patients often have no choice other than to seek treatment outside of insurance.  The widely adapted IDSA guidelines for the testing, diagnosis, and treatment are prohibitive to many.  Many Lyme doctors also come under fire in the form of legal actions and license revocation.

Lucky us.

[CareBayer]

My nurse practioner mentioned something about a western blot but I cant remember exactly what she said. She did mention I only had two O-bands when many people with lyme have way more. I'm guessing that came from the western blot.

The treatment issues I'm still researching. I'll go to the infecious control dr to see what he has to say. Other than that I dont know what to do. Im at a total loss. My nurse practioner is the best. She is wonderful. I know she will help me in every way she can. I have no doubt about it.

I lived by a wooded area when this occured with lots of animals who could carry ticks. It's not abnormal for me to have been bitten by a tick.