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Common Misdiagnoses of Lyme

Posted on Apr 6, 2013 in Blog |

I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth Topic: How long does it take to get a Lyme diagnosis? What are other common misdiagnoses? For me, it took 29 years to get the correct diagnosis. I went through some years of being in good health tempered with other years that weren’t so great. When I turned 40, my immune system weakened and that’s when I started deteriorating significantly. I kept seeing specialists for various disorders. They are very good within their specialties, but no one was looking at the big picture. No one was seeing how I seemed to be having numerous auto-immune disorders. Note to the reader: if you have any auto-immune disorders, please consider being tested for Lyme and co-infections of Lyme. Over the years, some of the diagnoses I received included: stomach ulcers, h.phylori, a tooth killed itself, pancreatic tumors, ideopathic hypersomnia, ideopathic intermittent right temporal waves, Lupus, bursitis, positive antinuclear antibody (ANA) test, viral meningitis, gallstones, incontinence, lipoma on spinal cord, Vitamin D deficiency, possible Epstein-Barr (Herpes complex type 4), Blurred Vision, stomach antrum atrophy, sun sensitivity, dry cough, elevated gastrin levels, peripheral neuropathy, hypo-thyroid, recurrent sinus infections, migraines, rashes. Within ten minutes of asking how long it took others to get a Lyme diagnosis in a Facebook group, we received these replies of how long it took between onset of symptoms and the final Lyme diagnosis: 16+ years; 28 years; 25 yrs; 11 years; 25 years; 28; at least since college 10-15 years; extremely ill since 2007; 7 years; I know the exact date I was bitten, so it’s no mystery to me: 19 1/2 years. That being said, it still took 14 years for a doc to actually listen to me and diagnose it; 28+ years undiagnosed; in the process of being tested for Lyme….was diagnosed with ”fibro” around 7 years ago and now am wondering if it was really fibro! had a baby recently and the symptoms came 10fold after! Other conditions that many Lyme patients have been diagnosed (and treated for) before finally finding the real cause of their symptoms: ALS, anxiety,...

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5 Things I Want Everyone to Know About Lyme

Posted on Apr 1, 2013 in Blog |

April 2nd – As part of a task to get myself writing more regularly, I have accepted The Health Activist Writer’s Month Challenge #HAWMC. What are five things I want them to know about my condition? 1. Lyme is called the masquerader because it imitates so many other diseases. It attacks the weakest part of a person’s immune system. In my family alone, our symptoms were all different. It was hard to believe we all suffered from the same infection. 2. ‘Lyme’ is not the only disease in this category. There is Lyme and then there is also: Bartonella, Babesia, Erlichiosis, Rocky Mountain Spotted Fever, Protomyzoa Rheumatica . . . and the list goes on. It’s NUMEROUS diseases that tend to fall under the ‘Lyme’ category. 3. The Lyme test from LabCorp and Quest is up to 60% INNACURATE. If you test negative to the test from these two labs, you may very well still have Lyme or a co-infection of Lyme Disease. 4. Ticks are not the only carrier of Lyme and its co-infections. You can catch it from cats (‘cat scratch fever’ is a form of Bartonella), mosquitos, flies, fleas, any type of blood sucking insect. 5. If your family pet has been diagnosed or treated for Lyme disease, your entire family should be tested for Lyme disease. Share...

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Virginia Passes Lyme Law

Posted on Feb 19, 2013 in Blog |

The VA Lyme Bill just passed in Richmond by a Vote of 56 yes and 40 no. This is now the LAW in the state of Virginia!!!!!!!!!!!!!! A. Every licensee or his in-office designee who orders a laboratory test for the presence of Lyme disease shall provide to the patient or his legal representative the following written information: ”ACCORDING TO THE CENTERS FOR DISEASE CONTROL AND PREVENTION, AS OF 2011 LYME DISEASE IS THE SIXTH FASTEST GROWING DISEASE IN THE UNITED STATES. YOUR HEALTH CARE PROVIDER HAS ORDERED A LABORATORY TEST FOR THE PRESENCE OF LYME DISEASE FOR YOU. CURRENT LABORATORY TESTING FOR LYME DISEASE CAN BE PROBLEMATIC AND STANDARD LABORATORY TESTS OFTEN RESULT IN FALSE NEGATIVE AND FALSE POSITIVE RESULTS, AND IF DONE TOO EARLY, YOU MAY NOT HAVE PRODUCED ENOUGH ANTIBODIES TO BE CONSIDERED POSITIVE BECAUSE YOUR IMMUNE RESPONSE REQUIRES TIME TO DEVELOP ANTIBODIES. IF YOU ARE TESTED FOR LYME DISEASE, AND THE RESULTS ARE NEGATIVE, THIS DOES NOT NECESSARILY MEAN YOU DO NOT HAVE LYME DISEASE. IF YOU CONTINUE TO EXPERIENCE SYMPTOMS, YOU SHOULD CONTACT YOUR HEALTH CARE PROVIDER AND INQUIRE ABOUT THE APPROPRIATENESS OF RETESTING OR ADDITIONAL TREATMENT.” B. Licensees shall be immune from civil liability for the provision of the written information required by this section absent gross negligence or willful misconduct. 2. That the provisions of this act shall expire on July 1, 2018. Share...

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So Very Different Reasons

Posted on Feb 19, 2011 in Blog |

I wrote this poem in a poetry class at The Writer’s Center in Bethesda, Maryland under the wonderful guise of the poetry man himself, Reuben Jackson.  I am ashamed to say I have no idea the type of poem this is, but we had to follow strict rules to create it (something I am not very good at). . . . enjoy. i. I am 47 years old and sometimes almost as invalid as my mother, 79, after a stroke. Every component of my body is riddled with disease Muscles, tendons, fascia, bone, and brain. The spirochete bacteria have entered and thrived Drilling from blood vessel walls through tissue, ligament and marrow. Pillaging as they roam, multiplying along their way. On my stomach, lifting alternate arms and legs My leg is not lifting Swelling and disease disabled my brain’s messaging ‘It’s ok, sweetie, it will come back. We’ll just keep trying,’ she says. I pelvic tilt and try to plank, Hoping this time my muscles hear the brain’s message and follow along. They do not. I am incontinent despite constant kegels. I used to bend, flex, and stretch as well as a gymnast. Pliable, agile and entertaining. Now, stiff and heavy as concrete I wince and tear up when morning arrives, knowing it will be 30 minutes of stretching before I can bend enough to pee. The closest I come to sports is tennis elbow and ankles the size of baseballs. Vicoprofen and Tramadol have become my daily pocket friends, accompanying me everywhere I go. I cannot stand more than five minutes, Even changing sitting positions every few, Terrified of becoming a stone statue. ii. Grocery store visits less than 30 minutes And don’t even think about reaching for anything on the bottom or top two shelves. Did you know that grocery stores only have six shelves? Shopping mall walks non-existent for more than a year. Stairs no longer an option, rather, a terror. God, please let there be a ramp. Special seating in the movie theater for me, Thank God for Handicapped placards. Silence and darkness befriend me. My husband’s whistles drill through my brain, the shrill making...

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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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