Lyme Disease

Sometime back in October, I'd thought long and hard about what could have brought on William's condition. I wondered if it had anything to do with our trip to Arkansas 4 weeks before his symptoms emerged. I thought about Lyme Disease, as the area had gotten a lot of rain that spring and the ticks were rampant there. We looked for ticks each day of our vacation, but did not find any on the kids. A friend suggested that it might be Lyme Disease because she has learned a lot about it recently when her whole family tested positive. William was hospitalized again shortly after that and I requested a lyme test. I knew that the standard CBC test was highly unreliable, but I felt like it was a first line of defense. The results came back negative, overall, though one of the titers showed a positive value. This test frequently gives false negatives and positives.

Our neurologist gave good reasons why he did not think it could be Lyme Disease, but I did get the impression that he thought we were questioning his original diagnosis. I felt sure from my reading about CIDP, that William does indeed have it and the treatment is working, but I was more concerned about what triggered his immune system to begin with. The doctor eased our minds a bit that his collection of symptoms were not truly indicative of Lyme, but it still lingered in the back of my mind that we never really got a full answer about this disease. We let it lie for a while.

In mid-December, I was brave enough to ask our pediatrician to sign for a specialized Lyme Test for William. I'd learned of this test from the same friend as before and had ordered the lab kit from the company. The cost of the test is $500, which is part of what kept us from insisting on this special lab work before. The nagging feeling inside me continued and when we found out about another friend of ours that went to Arkansas with us, experiencing very similar symptoms to WIlliam's, I couldn't ignore it any more.

A few weeks later, the lab results returned and they were officially inconclusive. I referred our pediatrician to an out-of-state pediatrician who specializes in treating Lyme in childhood. They discussed the results over the phone. After a couple more tests, they agreed that William does have Lyme Disease. The treatment for Lyme Disease is high doses of antibiotics over extended periods of time. We started William on Azythramycin immediately. He has been on this medication for 1 week now. It will be months before we see an improvement and we are told that he can get worse before he gets better as the bacteria fight hard against their own destruction.

Lyme Disease can be devastating. The Borrelia burgdorferi bacteria can penetrate all the tissues in your body and cause devastating neurological symptoms. In William's case, we believe his immune system kicked into gear in response to the invasion and got confused and started attacking his own nervous system (CIDP). We are hopeful that treating the lyme will relieve his immune system of the responsibility of attacking the Lyme and allow it to relax enough to relinquish its hold on his nervous system.

Please read up on Lyme Disease and know how to protect yourself from its devastating effects.
http://www.lymediseaseassociation.org/
http://en.wikipedia.org/wiki/Lyme_disease
http://www.cdc.gov/ncidod/dvbid/Lyme/