posted
I posted a question a few weeks ago to see if anyone had sent an "I told you so letter" to doctors who had mis-diagnosed them.
A couple people posted they would like to but didn't know what to write. I'm copying my letter (names omitted). Please feel free to critique. This particular dr was very helpful, just wrong. She genuinely tried to help me.
I have a few others to write to drs who were rude and arrogant, so I'll omit the paragraph about how welcomed I felt in the office.
Please let me know what you think!
Dear Dr. *~*~*~*~and staff: My name is *~*~*~*~*and I was referred to your office in December of 2010 by Dr. *~*~*~*. I presented with many different symptoms. The symptoms listed in order of severity were described as overall fatigue and malaise, deep bone pain in arms and legs, muscle weakness and fatigue in arms and legs, joint pain and inflammation in arms, hands and legs, tingling sensations and numbness in arms, legs, hands and feet, memory loss/confusion, difficulty concentrating, mild fever, heart palpitations, dizziness and constant feeling of breathlessness.
At the first visit, I mentioned my concern that my symptoms could be caused by lyme disease however the lyme titer had come back negative. You told me that with a negative titer you were convinced that it was not lyme disease however, you did add that you were not a lyme specialist and if I wanted to pursue that I would need to find someone who specialized in it (I truly appreciated your honesty!).
I did pursue that avenue and found a doctor who does specialize in lyme disease. I did test CDC positive for lyme using the western blot test through Quest Lab, along with a ``cocktail'' of several different kinds of active bacteria in my body that have caused the many different symptoms.
Before I go further though, I have to express my appreciation to you and your staff. You were so thorough and determined to find an answer to what was causing my symptoms. In the couple visits I made to your office you spent so much time listening to me and explaining in detail the labs you were running and the diagnosis' you were pursuing. Your staff was amazing, always friendly and professional. I felt very welcomed in your office and felt that as your patient I was important. I would whole-heartedly recommend your office to someone seeking a rheumatologist and would come to you first should I need your specialty in the future.
With that said, may I be so bold as to advocate for chronic lyme patients and ask if you would consider researching lyme disease for yourself? Chronic lyme mimics so many neurological and auto-immune disorders and I would even propose the possibility that there could be other patients in your practice who could have been misdiagnosed.
The International Lyme and Associated Diseases Society (ilads.org) has basic information, treatment guidelines, research publications and articles and statistics. One specific statistic regarding lyme disease is that, ``The ELISA screening test is unreliable. The test misses 35% of culture proven Lyme disease (only 65% sensitivity) and is unacceptable as the first step of a two-step screening protocol. By definition, a screening test should have at least 95% sensitivity''. It is also estimated that, ``fewer than 50% of patients with Lyme disease recall a tick bite. In some studies this number is as low as 15% in culture-proven infection with Lyme spirochete''.
I am aware that this information goes against what you have been taught about lyme disease. I genuinely hope this letter in no way, shape, or form implies any disrespect to you as a physician or offends you in any way. You are extremely gifted in your specialty and I only hope to raise awareness about an illness that has changed my life. The statistics that I have researched suggest that if you don't already have someone close to you who is infected with this illness, you will at some point in your life. And as a physician with the power to help people get well, if nothing else, if this ends up in your garbage, I pray that when that person who is close to you becomes ill, you will remember this information so that he/she will not have to endure the pain that I have for the last couple years.
I deeply appreciate your taking the time to read this and thank you for allowing me to express my concerns!
-------------------- No tick bite/rash sick Nov '09 diagnosed Mar '11 Doxy/Zithro LOTS of supplements
Psalm 62:5b He is my rock and my salvation. He is my defender, I WILL NOT BE DEFEATED! Posts: 127 | From Illinois | Registered: Sep 2010
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posted
I think it is a great letter!! Sometimes I can't write a good letter because I let my anger get to me. You didn't do that!! Good job!!
By the way, I need some help writing to my long term disability carrier....are you free? Posts: 13 | From Florida | Registered: Mar 2011
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That is an excellent letter--very well written. Thanks so much for sharing and Bravo!
-------------------- ------------ It took 20 years to find out I'm not crazy. New bite in 2010 pushed my body over the edge. Positive for lyme, babs, bart, and myco. I am not a doctor and happily offer only my own opinions. Posts: 357 | From The Beach | Registered: Feb 2011
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