My daughter is 15 years old and she has been diagnosed with RSD or CRPS. She has been to the Cleveland Clinic Childrens Hospital, Pain Rehabilitation Program, it is a three week program, two weeks in hospital stay and one week outpatient. While I was there I spent many hours with other mothers that had their children hospitalized with RSD. We tried to find a commonality between our children. Some of them had Positive ANA's, they also had mononucleosis, and ended up with high Epstein Barr Titers. Several had POTS, (low blood pressure with syncope and Tachycardia,) Most of them had these illnesses in the past or were being treated for them. My daughter also had a tick bite when she was a toddler. Her Lyme was negative the last blood work. But with this last blood work she had a positive ANA, her last positive ANA was 5 years ago, every other one since then has been negative until now, she had a flare up and was hospitalized. They put her on Lyrica which dropped her blood pressure so they took her off and on Tuesday she had a Sympathetic Nerve Block, and it is helping. I hope this helps.
Quote:
Originally Posted by jenno
Hi Roz,
I completely understand your advice and concern for your friends here on this sight, especially given your personal experience. There is an RSD doctor out east (Dr. Robert Schwartz from South Carolina I believe) who shares your thinking that there is often a hidden infection involved with RSD.
My daughter's first experience with "amplified" pain followed a staph infection in her throat. She had been away at a weekend horseback riding camp and returned home with this infection. It has always concerned me that the horse she rode and took care of that entire weekend died two days later. For many months she continued to have severe pain even though throat cultures came back normal.
**Also of concern ... prior to that, she had been bitten by something at another camp. When she returned home, she had a bite the size of a dinner plate on her leg. We took her to the emergency room where she was treated for cellulitis.
It was a year after the staph infection in her throat that she sprained her ankle and was diagnosed with RSD. I am so concerned that there may be an underlying infection that perpetuates her RSD, but when I read the symptoms of Lymes, many do not apply. I questions if it is somewhat like RSD where different individuals have different symptoms?
She has since had more than her share of staph infections, but when I took her to an infectious disease doctor, he said that once a person has one, they are more susceptible to getting others. He pretty much just blew me off.
Do you have any suggestions on how to find a "Lyme Literate" doctor in our area?
Thanks,
Jeanne
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01-15-2009, 08:53 PM
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