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Why Do I talk About Lyme So Much?

Posted on Jul 29, 2015 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 from the right lab. 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 Betty 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. If I missed Lyme Disease 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 complete testing from a specialty lab (NOT LabCorp or Quest). Do not settle for just an Elisa test. Do not settle. Sharon’s Symptom History The simplest way to present my own history to you is to show you how many different types of physicians I saw, some of the major medical events that occurred, and of course, the various diagnoses I was assigned. I know many patients can probably relate to this snapshot. Physicians I saw for symptoms Often, I saw more than one...

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Specialty Labs for Testing

Posted on May 3, 2013 in Blog |

Day 3 – May is Lyme Disease Awareness Month When a general physician tests a patient for Lyme, s/he runs a typical ELISA or Western Blot test. The ELISA or Western Blot also does not test all of the DNA bands for signs of infection. Therefore, it is not a test that Lyme Literate physicians use. If the Elisa or Western Blot test from a standard lab is the only test your physician is using to decide if you have Lyme or a co-infection, you may want to find a physician more familiar with Lyme. The ELISA and Western Blot do NOT test for any of the co-infections of Lyme disease. Testing for co-infections requires labwork at specialty labs. If you think you might have one of these, demand that your physician test your blood at a specialty lab. If s/he isn’t familiar with these labs, find a new physician who is familiar with them. Disclaimer here: I am NOT a physician. I have no medical training and don’t try to even pretend to give medical advice. I have no affiliation with any of these labs. I just am sharing what I have heard and what I have personally experienced. Labs that I have heard are ‘state of the art’ include: Stoneybrook, Galaxy Diagnostics, Fry Labs, Igenex. I believe Igenex was the first lab that tested all the DNA bands for Lyme. Galaxy Diagnostics is the premier lab in the nation for Bartonella testing. They are able to identify 26 strains of Bartonella. When my family was originally going through testing, Galaxy was still finding and identifying new strains. Each time Galaxy found a new one, they went through the previous blood samples and retested them. That’s how they found my husband’s strain. Just four months prior, they couldn’t see it and he tested ‘negative.’ Now he had an explanation for his symptoms. He went through treatment and he has been Bartonella free for two years. Fry Labs in Arizona has some cutting edge stuff going on. They are the primary lab for testing for and finding the Protomyxzoa Rheumatica. All of these labs are also very helpful online...

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Different Symptoms for Each Patient

Posted on Apr 13, 2013 in Blog |

April 13th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth Lyme disease affects each patient differently because it attacks the weakest part of each patient’s body. For example: Our son, Stephen, suffered from a low-grade fever and recurrent pneumonia for most of his 16 years before being diagnosed with three strains of Bartonella (a co-infection of Lyme disease). He had mono twice. My husband, Jeff, had a rash on his leg that looked NOTHING like a Lyme rash. He also had Lyme rage. He didn’t get violent; he just got really angry over stupid stuff. And as quickly as the anger came; it would leave again. He tested positive for one strain of Bartonella. You’ve read about my myriad of symptoms and weird diagnoses. I had two strains of Bartonella. Would you ever think that the three of us had the same disease? Yet, as we each went through treatment, our symptoms lessened or disappeared completely. If you have been diagnosed with anything relating to your auto-immune system, and you have not been tested in the past two years by a specialty lab, please consider being tested now. Testing has continued to improve, especially in the past two years. Incredible progress has been made in the testing process in specialty labs (the standard ELISA and Western Blot are still (in my opinion) not good indicators of infection). My favorite specialty labs include Galaxy Diagnostics in North Carolina (www.galaxydx.com). Igenex lab in San Diego, CA is also a great lab to get started with. (www.igenex.com). The staff at both labs is VERY helpful; they are happy to answer any questions you or your physician may have . . . Share...

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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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