First, I want to tell you all that my neuropathy has definitely continued to improve with continuing antibiotics for lyme. I am also just generally more "well". I've been able to get a cold, and it not become a sinus infection, and I'm able to walk much greater distances, up to 3 miles at a pretty good clip. The main limit on my walking is back pain, from a fusion in 2006 which never healed. Still, 3 miles makes me happy.

Also, for those of you who commented on Flagyl...this will not be an easy decision to make. I'm still on Amoxicillin, 1500 mg three times a day, zithromax, 600 mg/day, and Diflucan (I don't rememeber the dose). But final treatment of the lyme bug requires a drug which can kill a specific life stage of the bacteria, and flagyl is the one drug known to be able to do that. My doctor has increased my supplements--putting me back on lipoic acid. He wants maximum improvement of the neuropathy before trying Flagyl. If we do it, I think he will continue to monitor me closely, as he has been.

In terms of supplements: fish oil, acetyl-L-carnitine, N-A-C, Icaps antioxidants, turmeric, 5HTP, DHEA, R lipoic acid, Quercetin (CoQ10), occasional vit B12, Calcium and Vit D3. I do believe they all help my nerves to regenerate.

So again, everybody: if you're PN is undiagnosed, or you are thought to have some sort of antibody negative immune disease, please ask your doctor to have your blood sent to a lab specializing in tick-borne diseases. Igenex was the lab to make my diagnosis, after six negative tests.

Also, if it seems you may have lyme clinically, by history, and your blood tests are negative, you ought to stil try treatment. The reason is that the antibody tests become negative with time. I was lucky enough to be in an acute flare when tested, so my acute antibody levels were high; but the antibodies that go up in chronic disease were negative! This turned out to be because my body has stopped making those antibodies (IgG) altogether. I lost my antibody response to all vaccines, for instance. This happens to lymers.

The diagnosis is as much by history and exam as by lab.

Just thought a happy update was due, along with a reminder about this disease that is way under-diagnosed and causes such havoc.