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Originally Posted by dachshundlover  My daughter has Lyme. The doctors thought I was a crazy mother because I would that her in the office with crazy symptoms. I finally took her to Childrens Hospital but it took them the admit her into the hospital after the second visit there.
She was stage 2. They did spinal taps on her. Her symptoms were rashes up and down her legs, not the bulls-eye rash, then her joints started to hurt - the last straw was - she couldn't lift up her arm.
After all the testing and a 5 day stay in the hospital - test came back positive with Lyme.
She get tired very easily now. But for the most part she is fine. She is 16 now and this happen when she was 12.
Good luck with the symptoms. |
My daughter went 6 months being misdiagnosed even when I stated that it was probably lyme disease on her very first visit.
Even when she finally was diagnosed and all of the apologies were said, I still had to deal with arrogant and inept doctors. I did much of the research on my own and I was fortunate enough to find a fabulous lyme literate doctor in Waldorf.
Some things that I have learned is:
You do not stop taking antibiotics until you go a minimum of two months without a Herxheimer Reaction
Herxheimer reaction - Wikipedia, the free encyclopedia My daughter had a herxheimer reaction about every two weeks. She'd run a low grade fever and just feel generally crappy for a day or two. Her doctor kept her on antibiotics until she went two months without having these symptoms.
What many folks don't know is that when you have had lyme for a long period of time, you are very likely to get sicker before you get better once you start on antibiotics. This is due to the above link.
Antibiotics will wreak havoc on your digestive tract. Acidophilus helps immensely, and will take care of a lot of the stomach and digestive problems that come along with taking heavy doses of antibiotics. You can buy it over the counter at any drug or health food store.
The insurance companies HATE paying for lyme treatment because the CDC still has antiquated treatment parameters when it comes to lyme. 6 weeks of antibiotics and you're "cured"
. There are many doctors who won't aggressively treat lyme disease because insurance companies have gone after doctors who do and try and have their medical license revoked due to over treatment. It may be better now, but several years ago this was the case.
Do not ever let your doctor demean you or tell you that you are crazy. If they do, find another doctor because your health or your child's health depends on it. I had an infectious disease specialist at Children's Hospital tell me that I had no idea as to what I was talking about when it came to lyme and that if my daughter didn't get better after 6 weeks of antibiotics then she didn't have lyme, and that long term antibiotics wouldn't do a thing. He was wrong and thankfully I didn't bow down and listen to the "professionals". I found a doctor that took lyme very seriously and treated my daughter properly and she has had zero lyme symptoms for many years now.
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