Originally Posted by LizaJane

Hi Folks,

I don't know if anyone reads these at ALL, but I'm here to post good news, and news I think is important for all to hear.

Last update was May. My neuropathy began, seriously, in 1996-1999. So, the fact that this summer I bought myself a bicycle, says something major about advances in my balance. It took a lot of research to find the best bike for someone with weak quads and not the best balance, but I found a good bike (I do wish, in retrospect, it was an old-fashioned girls bike but just as light as it is, which I could not find). I also went hiking, biking, and kayaking. The neuropathy has continued to improve, with more sensation returning in my toes, and more movement.

I continue to feel more well, although still, I know I'm not normal, but I am aging.

It now seems that in addition to lyme, ehrlichiosis, and possibly babesiosis, I do have bartonella. I am taking an herbal antimicrobial for bartonella and have had a herzheimer's reaction to it, which indicates infection.

I am very serious that people with any chance of having lyme must find a really good LLMD, a doctor who belongs to ILADS, and not the standard infectious disease lyme organization, if one really wants to get treated thoroughly for all the diseases carried by infected ticks. My happy ending is not the only one. The lyme boards have other happy endings for people with chronic neurological infections, but mainly through ILADS doctors.

I continue to suggest that people with "idiopathic" peripheral neuropathy get tested for lyme by a lab that specializes that insect borne disease, not by a standard lab such as quest, labcorp, or a regular hospital.

It is important to understand that the infection and co-infections can cause the tests to become negative, so a good doctor can make the diagnosis evene in the absence of antibody tests. (For instance, I have granulocytic ehrlichiosis; it affects white blood cells which make antibodies; therefore, I stopped making antibodies which would have made the tests positive. I had 8 negative tests before the specialized lab got a positive, looking for a different antibody. I had a diagnosis of immunodeficiency which would make tests negative. The immunodeficiency was FROM the illness!)

So, there is hope even when there is no diagnosis for years.