posted
My daughter had a rheumatolgist appointment yesterday. I was VERY guarded about even going. Luckily the Doctor was nice and appeared to be non judgemental. He did tell me that my daughter did not meet the "cdc" criteria for lyme. She had the bullseye rash, IGM/IGG inderterminate and all symptoms...Dr J feels like she has Bb.
He was of course "taken" with her antibiotic protocal. WHen he asked what tindamax was for and I responded "it is to attack the cystic form of Borrelia Burgdorferi". He looked at me like I was crazy.
Anyways, in regards to her lupus studies. He felt that they were "false positive" due to her body fighting an infection. He is running more test to be sure. He said he feels that her ANA will return to normal in 1-2 years. I am so thankful for that news.
Thank you for everyones concern and encouragement as I was devasted to learn she had the HLA DR4 gene and lupus test were positive. This doc did not seem too concerned.
On the plus side, she seems to be doing well. Aside for some complaints about fatigue and occassional headaches, she is making progress.
Thanks again everyone. Posts: 747 | From Utah | Registered: Apr 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
I'm so glad to hear she is improving and that you are feeling better too.
I do wonder what part of the CDC criteria she didn't meet...
http://www.cdc.gov/ncidod/dvbid/lyme/ "Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans. If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful in the later stages of disease."
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Thank you 17hens! You are so right. Remember: We are in the SOuth "where lyme is not!" Lyme is denied in Georgia!Her elisa was negative (big shocker) and she is positive band 41 along with other "non specific bands IGM" they did not report which bands of course! She is being retested through Igenex now. SHe also has antibodies to RMSF.
Before her bullseye rash, she competed in gymnastics. Then it was downhill fast. FOr me, I dont give a crap what the "CDC" says...I know they are wrong. It is just unfortunate that the doctors dont see it that way. They rely solely on lab testing when the reality is...really...who does meet CDC criteria? I wonder with the CDC being in Atlanta...is that why the denial?
I am "CDC" + IGM and + elisa with a tickbite. BUt even that is "not good enough" because I have poor IGG response. Georgia is a terrible state to get/have lyme disease. No one will help.
Thanks again, I really needed some good news.
Posts: 747 | From Utah | Registered: Apr 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Glad to hear she is improving. Posts: 1357 | From Massachusetts | Registered: Jun 2008
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