Lyme Arthritis

<p>Anyone have experience with this disease? I would be interested in learning about diagnosis and testing. CC is always a good place to find knowledgeable people.</p>

<p>son had this in junior high school. Very swollen knees. Received 2 month-long courses of oral antibiotics. Did not work. A PICC line (perpherally inserted central catheter) into his heart was installed and he received antibiotics intravenously for one month.</p>

<p>Wife and I had to learn how to hook up IV's, flush his lines, etc. Visiting nurses were a great help. He amazingly was able to continue school, with restrictions and accomodations, of course.</p>

<p>Then, infectious diseases at a children's hospital determined the the causative organism could not possibly still be alive in his body, so he was handed over to pediatric rheumatology. Spent several months on plaquenil (sp?) and high doses of Alleve, along with physical therapy.</p>

<p>Roughly 2 yrs after the initial diagnosis (which was done by testing fluid drained from inflamed knees), he was given a clean bill of health and has been OK (God willing) for a year. Pediatrician had no idea he had Lyme. An orthopedic guy whose entire family had had Lyme got the idea to test for it, figuring the knee fluid he had just drained would be perfect to test.</p>

<p>That's our story. When I read about how Lyme can attack things like the nervous system, I count our blessings.</p>

<p>What else can I tell you?</p>

<p>LI is one of the Lyme capitals of the world. My mom had Lyme disease. Blood tests are possible. You can get a script from your doctor, and I believe there are centers where one can be tested. There is a Lyme Disease Center at Stony Brook University, and I'm sure there are others.</p>

<p>I know many with chronic Lyme's and it's no picnic.</p>

<p>One important thing to know is that Lyme's does not always present itself with the bulls eye rash.</p>

<p>Lyme can occur in any state in the country. There are other coinfections that can occur and require treatment, as well. The sooner you determine you have Lyme and get it treated the better. This disease can mimic many other diseases including Meningitis. You do not need to see a bullseye rash to have caught it. You do not need to see a tick on you to have caught it. The early instars (young ticks) that can infect you can be smaller than a grain of sand. You can catch it pretty much any time of the year. </p>

<p>Important: There is a high rate of false negatives in the testing if your test is sent to labs that use methods developed during the time when the Lyme vaccine was being researched but did not come to market due to controversy over efficacy vs. possible induced illness. There is a lab in California (see website below for the name) that uses the most sensitive testing with fewer false negatives.</p>

<p>Treatment protocols can be controversial and "chronic lyme" is denied by much of the medical field while patients present chronic illness. Some docs who have worked with patients with chronic Lyme have had trouble with their medical licensure. Understanding of this disease is still in its infancy.</p>

<p>Book recommendation:</p>

<p></a> Cure Unknown: Inside the Lyme Epidemic…</p>

<p>Website recommendation:</p>

<p>CALDA</a> - California Lyme Disease Association</p>

<p>Best of luck to you!</p>

<p>Edit: Igenex is the name of the lab in California that has the most sophisticated testing for Lyme and coinfections.</p>