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In Honor of Aunt Betty

Posted on Apr 13, 2010 in Blog |

Why do I talk about Lyme so much? Am I obsessed with it? Do I think everyone I meet could have it? What is the deal with Sharon and Lyme? I talk about Lyme because it took me decades to get properly diagnosed and it could have been diagnosed with one test (the Western Blot). I don’t want others to go through what I went through. I don’t think everyone has it, but I bet 30% of the people I know have at least one DNA band that would test positive for Lyme or a co-infection of Lyme. More importantly . . . I know how easy it is to MISS Lyme Disease. In 2002, in the midst of my symptoms intensifying, my aunt DIED of Lyme Disease. In the midst of her intensifying symptoms, in the midst of her fight to even be tested, I had no idea that my symptoms were similar to hers. Aunt Betty died at the age of 57. Two years before, she was a completely healthy, radiant, psychology professor teaching at Auburn University. A family member, someone I was close to, died of Lyme Disease. . . and I didn’t make the connection. Everything I had kept being explained as something else. So, I never connected it. So, if I missed it when a family member died of the disease, I worry about everyone else out there who has some of the same symptoms but doesn’t have someone staring them in the face saying, ‘Get Tested for Lyme Disease.’ Imagine my face in front of you. Get tested for Lyme Disease. And when you get tested, demand the Western Blot. Do not settle for just an Elisa test. Do not settle. Symptom History – these are symptoms that have been connected one way or another to Lyme Disease. 1981 Viral Meningitis- Internist Possible Epstein-Barr (sleeping 20 hours a day) – Internist Sun sensitivity develops – Optometrist Dry eye – Optometrist 1982 Back pain starts Chiropractor 1986 Elevated gastrin level and digestive troubles – Gastroenterologist 1988 Elevated gastrin – Gastroenterologist 1990 Novacaine stops working for dental work – Dentist 1993 Chronic back pain treated...

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Get Properly Tested; Rule Lyme Out

Posted on Apr 12, 2010 in Blog |

A friend wrote me today asking for suggestions for a neurologist and a primary care physician who is a good diagnostician. ‘I’m experiencing some weird physical symptoms myself, and tested negative for Lyme at my internist’s the other day. However, she wants me to see a neurologist for joint pain and persistent neuropathy in my hands and feet.’ I replied, ‘Did the dr run the Western Blot AND the Elisa or just the Elisa? Do you have a copy of your test results? I would love to see them . . . ‘ She replied, ‘She just ran the Elisa only. She said if my symptoms haven’t cleared in 6 months then she’d like to rerun the Elisa. My symptoms aren’t debilitating, but are certainly strange, and I still second-guess myself as to whether this is just part of getting older and less fit or whether something else is at work.’ I get similar emails about once a week and each one makes me want to scream at the top of my lungs. Please tell me, please have one physician logically and reasonably explain to me why they would choose to allow a patient to deteriorate for six more months without choosing to run an accurate Lyme test, if for no other reason than to rule it out?? Someone find me a physician who will answer my question without arrogance, attitude, or ignorance. Please. I cannot say this enough. I cannot say it loudly enough. Read the symptoms at the end of this. If you have any of these symptoms, please go to a physician and DEMAND the following: I am having the following symptoms (list them). While I know they could be related to a myriad of conditions, I specifically want to rule out Lyme disease with the following specific test: I want you to run the Elisa test. And on the blood order, I want you to order that the Western Blot be run regardless of the results of the Elisa. And on the Western Blot, I want ALL of the following DNA bands tested: 12, 18, 20, 21, 22, **2325, 28, 30, **31, **34, 35, 37,...

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