Back in 2013 my daughter was bit by a tick while we lived in Pennsylvania. I discovered the standard bullseye rash several days later. She was immediately started on a course of antibiotics and we were told they were hopeful to get rid of Lyme before it even started.
Several months later she started showing strange symptoms: rashes, sleep walking, we assumed it was just a phase of she had gotten into something. Almost a year after the bite, she started showing extreme symptoms. She would break out in hives, they would start on one are of her body, disappear, then move to another area. This lasted for over a week. She then woke up one morning crying because her legs were in pain and she couldn’t walk. When I tried to stand her up she had what looked like a seizure that lasted nearly a minute. Got her back into bed, made her a healthy breakfast, and she fell asleep in her bowl of eggs. She had no fever, but I felt something was wrong so I rushed her to the ER. They did all kinds of tests, and everything came back negative. I told them about the tick bite and the possibility of Lyme disease. The referred us to our family doctor to have testing done.
Every test she’s had done has shown up as clear. No Lyme disease, no other disorders, but there HAS to be a reason for her symptoms. Some days she’s a perfectly happy and healthy six year old, other days she’s throwing up, and in agonizing pain from her arms and legs. Sometimes her joints are swollen and she cries when she has to walk. She has had many other seizure episodes, usually after sitting, or after waking up. They never last long. There are days where she can’t lift her arms. There are many many nights where she sleep walks, and randomly urinates wherever she’s standing, she appears to be wide awake and will even have a conversation with you, yet have no recollection of wetting herself. Her stomach is upset constantly, and luckily we haven’t had too many more rashes.
I know this is a long shot, but does anyone else experience those symptoms or symptoms similar? We’ve been to a pediatric rheumatologist in PA who said there’s no way my daughter has Lyme because all of her symptoms don’t make sense. We’ve seen a doctor here who told me I would be better off finding a doctor in another state because although he’s a pediatric rheumatologist, he has no clue about the disease and doesn’t feel comfortable treating her.
Are there any natural remedies or something, ANYTHING I can do to help my daughter?
Every doctor we’ve seen seems to think there’s something wrong with her, but doesn’t know what it could be, some doctors thought it was Lyme, others not so sure.
Still trying to be a happy kid.