Hi, I need your advice! My son, age 10, is showing signs of lyme (I have it so know the signs inside and out).
I took him to the pediatrician and she tested for lyme. The ELISA came back "positive" and the Western Blott came back "negative" so the doctor said he may have been exposed to lyme but it's a false positive based on the Western Blott. I know the tests are not reliable but is that the right findings for these results?
He still has symptoms of lyme. She did give him augmentin 600mg twice/day for a possible sinus infection because of his headaches. I don't know where to turn or what doctor for him to see because I don't know a pediatrician that I can trust to really know lyme and it's treatment.
I do see a lyme specialist for me but he doesn't see children until age 13.
My gut tells me he has lyme by his symptoms and the way he looks/acts. What would you do???? Please help, I am desperate. Thanks, Wendy from Westchester County NY
If your son has a positive AND shows symptoms, he has Lyme. Also, you are in an endemic area. Do you know what lab did the testing? And did they test for co-infections? Dr. Charles Jones is the foremost authority on pediatric Lyme, not sure exactly where he's located but he has successfully treated thousands of children and teens with Lyme. Many cures from his practice, some of them post on this board periodically.
I am sorry you and your son are sick. It is good you know the signs so he can get the treatment he needs. He has a positive test and symtoms, he needs to be treated. I love it when someone has a positive test and the doctor says it is a false positive, but when it is negative it is definitely negative!
Regarding the Western Blot, the CDC requires a large number of bands to show for it to be considered positive yet many people who have Lyme do not have this many bands show. Lyme doctors often focus on which bands show, some are specific for Lyme. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They have more sensitive tests and list more bands on the Western Blot.
Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress.
As was posted, Dr. Charles Ray Jones is the best Lyme pediatrician in the country. He is located in New Haven, CT. I hope you can get an appointment with him soon. Keep us posted okay?
Thank you Everyone! I really appreciate your advice and reassurance.
I am so tired of these doctors that don't understand lyme yet act like an authority about it.
I think my son may have contracted lyme in Martha's Vineyard but our area is highly endemic also. I will call Dr. Cameron, my lyme doctor, and see if he'll make an exception to see him. Otherwise, I will get him to Dr. Charles Ray Jones in New Haven asap. Thanks, I'll keep you posted. This is such a roller coaster ride to say the least! Wendy
