Hi everyone- I know that I keep hearing you can have Lyme with a negative WB but I was really hoping. I only had 1 band show up- can't remember which, in the 40's and LLMD said not Lyme specific.
I have heard that if you were previously treated with abx, it is even more likely to have false negative. I was on abx or acne for 9 years. sx started right after I stopped.
So, here is what I think I should do- please let me know if you agree or have any other ideas.
Calling Steven Phillips for 2nd opinion on Lyme dx
Asking LLMD or Steven Phillips if it makes sense to ask for a PCR. My current LLMD does not seem to bother with any testing once he decides you have Lyme.
does anyone know anything about PCRs or any other test? Should I be ok with a negative wb?
Hi zandvoort. Remember that many people who have Lyme do not test positive.
I suggest that you get a copy of your results. Was it done at IgeneX? It is my understanding that IgeneX uses more sensitive testing and lists more bands on the Western Blot. If it was not done there, I would recommend getting it done there.
Were you tested for the co-infections? If you have not been tested for the co-infections, I would recommend doing so.
I think seeing Dr. Phillips is a good idea. He will likely test you for the co-infections.
You could also get a PCR. In my opinion, I think the IgeneX Western Blot is more telling because of the breakdown of the bands.
hmm sigh.....
Thanks Ticker- I guess I will just go to Dr Phillips and see what he says. No, the LLMD used Quest. He did test for co-infections but the results for that have not come back yet.
I am just so disapointed because I felt like I was finally off the merry go round and on a straighter path to wellness and now I am gettig back on the horse- or is it donkey?
Zand, i'm sorry to hear about your results. Maybe you neg test result has to do with having it done at quest?!! Why did your LLMD send it there after you hear so many stories of flase negatives?!! How are you seeing as you LLMD?
Did he/she say you defineltly don't have lyme?
Hold on tight to those donkeys' ears you'll be fine
Well, considering that Quest doesn't use high quality testing materials, I'm surprised that you had a positive band. Maybe this means that your Igenex test will show more bands since it's a higher quality test?
Yeah- the LLMD says he is positive I have Lyme or something REALLY close to it that has not been discovered yet. I kind of believe him but I really wanted to have objective evidence of it in case I need to go for short term diasability or something. Even now, work is having to accomodate me but they have not asked for medical proof-yet. Of course, the fact that my VP caught me when I collapsed and had to assist me to a special room at work to lay down when I could not walk might have something to do with that!
Below are some of the reasons why a test can produce a false negative.
In the largest Lyme disease trial ever conducted (for the Lyme disease vaccine trial for Lymerix) which included 10,000 participants, it was found that 36% of the volunteers with proven Lyme disease (culture or DNA positive) never developed a positive Western Blot.
Some reasons why a test can come back negative in a Lyme infected patient:
1. The sample was taken too soon after infection for your immune system to have mounted a defense.
2. You are producing a detectable level of antibodies, but the lab made an error.
3. You are producing antibodies to a strain of Borrelia burgdorfiri (Lyme) that the lab cannot detect (for the record, there are over 200 strains in the US alone)
4. You are producing antibodies, but they are bound to they Lyme bacteria (called a complexed antibody) without enough free-floating antibodies in the bloodsteam to be detectable.
5. Your immune system is compromised and not responding properly.
6. By taking antibiotics early in the disease, the immune response may have been aborted.
7. The bacterium has changed its makeup and the immune system hasn't noticed it.
8. The bacterium is cloaking itself inside an immune system cell thereby escaping detection.
9. You have a genetic predisposition to produce a negative test, as shown by Drs. Wang and Hilton in their 2001 publication.
