Lyme Disease Support Group

Hi zerospunky,

First of all, I love your ferret pic!!!! :)

From what I've read, the 41 band on the lyme western blot is specific for an antibody to the protein that makes the flagella of the spirochete. This is the part that makes it able to curl up and be a spiral.

So basically, if you have the 41 band, then you've had some sort of spirochete in your body. Other spirochetes besides lyme are relapsing fever, syphilis, etc.

But yes, if you have been sick for a long time, or you are VERY sick, it is possible that you will not have a positive test, or that only very few bands will be present. Basically the longer you have Lyme, the longer it has to mess around with your immune system, and some people get so sick that their bodies aren't even able to make the antibodies to it correctly! So then their body can't even fight against the Lyme very well, and they get even sicker.

Also the lyme spirochete has a lot of interesting biological mechanisms that make it so that it is able to evade the immune system. Like it can change what protein is on the surface, so that your immune system may make an antibody to one protein, and then it changes so that those antibodies will not be able to harm it.
Biography of a Germ talks about this, but I could not get through the whole book b/c the writer just took forever to talk about anything.

Another thing I learned is this: the original research that was done to establish "which bands belong to Lyme" were actually based on the lyme disease bacteria that is in Europe!!! Since bacteria are very good at changing and adapting in different environments and over time, it is very possible that you are infected with a version of lyme that is slightly different, genetically and physically speaking, from the version that was used to establish the "western blot" that everyone all across the world uses :( There are multiple species of borrelia that can cause lyme, so it is possible we all have slightly different "versions." Bacteria are very amazing at what they do, with the whole adapting thing!

Did you get your western blot test through Igenix? They specialize in lyme, and their labs test for more bands than your normal lab does. They are often able to get more accurate results because they do a better job at the test, since they do it ALL THE TIME. The test is not so simple.

The best way to look into this would be to find a Lyme Literate Doctor, or LLMD. This is a doctor who believes in chronic lyme and treats it. You can go to the ILADS website to get information. Or if you want to private message me I could help point you more specifically toward someone in your geographical area if I know of someone. We don't post names of doctors here publicly because of how much those doctors get harassed by insurance companies and medical boards for treating "outside the box."

Pretty much everything you said about your symptoms go along with lyme disease. I know it is not in your head. I hope you are able to find a good LLMD and look into this. If it is lyme and you get treated, it could really give you hope to get your life back! :)

Good luck! :) (hugs)

Wheel Watcher. Thank you for the informative information.