Refractory Lyme

[gibsongal]

http://www.ilads.org/files/ILADS_Guidelines.pdf
this looks like old material.. wondered though about

31. Persistent Lyme disease
32. Recurrent Lyme disease
33. Refractory Lyme disease

wish i had tests back. or some test to tell me what it is i have..

every place i read .. i should have been clinically diagnosed last year and perhaps i would have been better by now..
i have all the symptoms on all the check lists except for maybe 2-3 symptoms..
so frustrating..

[Ricobord]

Those three institutions are the trifecta of strict test interpretations, short courses of antibiotics, and belief in "post Lyme syndrome."

We really don't know if their test subjects in this study were actually cured of Lyme or still suffering with it. I would guess they had some of both in their pool of study subjects, but they assume that all of them were cured. Believing in persistence after insufficient treatment, I would be unlikely to trust any studies or conclusions from these organizations.

Lyme can indeed cause permanent damage to patients, including joint damage from arthritis, neuropathy, and other nerve damage. I have to wonder about chronic joint pain without arthritis, though. I would bet those patients are still infected.

Have you tried to find an ILADS affiliated doctor who is within your insurance network?  Many of them lie low. You can get recommendations from a local Lyme support group. They often know who is good and who to avoid.

[gibsongal]

i am going to think positive about getting my health back, joint pain, although it does not look too promising..

"To gain insights into the survival of spirochetes following antibiotic therapy, researchers at the Center for Immunology and Inflammatory Diseases at Massachusetts General Hospital, Harvard Medical School, and the National Center for Infectious Diseases at the Centers for Disease Control and Prevention teamed up to study antibody responses to Borrelia burgdorferi in patients with antibiotic-refractory or antibiotic-responsive Lyme arthritis. These findings indicate that joint inflammation persists in patients with antibiotic-refractory Lyme arthritis after the disease-spreading spirochetes have been killed."