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Getting the RIGHT Tests for Lyme Disease

Posted on May 6, 2017 in Blog |

In the Commonwealth of Virginia, physicians are required by law to give you a piece of paper stating that if your ELISA Lyme test comes back negative, that does not necessarily mean you don’t have Lyme. The test is so inaccurate that physicians have to tell you that you might still be infected. I do not understand why, then, they order this test. And, the test tells you nothing about whether or not you might have any of the co-infections of Lyme. If you want an accurate start to testing for Lyme disease, you might want to order the Lyme panel from Igenex Labs in San Diego, CA. Because of the ‘popularity’ of Bartonella, I also strongly urge you to get the three-day blood draw from Galaxy Diagnostics in North Carolina. Fry Labs in Arizona also offers state of the art testing for newfound protozoa that causes many patients’ Lyme disease tests to pop positive. If interested you can order the FL1953 panel from Fry Labs. And, if you have a physician who tries to bully you or tell you these labs are unreliable or “just in it for the money,” find a new physician who will help you find a cause for your symptoms. Share...

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Case Study: The Tick Bite Wasn’t Lyme

Posted on May 1, 2017 in Blog |

Lynn’s journey began during a family football game on Thanksgiving Day, 2006. She pulled a tick off her arm later in afternoon. Two weeks later, Lynn developed a fever and back pain. She had no rash. She thought she had the flu. She mentioned the tick bite to her physician, but he assured her it was too early to see any symptoms of Lyme Disease. Nevertheless, he gave her 28 days of Doxycycline. She returned a month later, still complaining of vertigo and back pain. “You are anemic. You need to eat more protein.” One afternoon, during a trip to the shopping mall, she had to lean down and place one hand on the floor and one on the wall to keep the world from spinning. The doctor treated her for an ear infection. They ran the ELISA test twice, both returned negative. Two months after her tick bite, Lynn’s personality was completely flat. A small group of girlfriends had flown from Texas to surprise her for her birthday. All she wanted to do was sleep. She couldn’t understand the jokes her girlfriends were giggling about. By the end of January, she was in the Emergency Room with such fatigue she couldn’t catch her breath. She was jumbling her words, her speech slurred. This 34-year old mother of two toddlers was showing signs of a stroke. A CT scan revealed peri-carditis. She was sent to a cardiologist, then a neurologist, and an endocrinologist. She visited nationally acclaimed medical centers in the Midwest, Florida and Virginia. She said they told her they don’t know how to treat your Lyme, but we can tell you how to eat differently. “Become a vegan,” one physician suggested. From January through April, 2007, Lynn didn’t drive because of the vertigo and because she had gotten lost while driving the three blocks between her home and her daughter’s school. Significant memory loss followed. Her church started bringing dinners over because she was burning dinner every night. “I would forget I was even cooking any food,” Shannon admitted. Two years after her tick bite, Lynn tested positive for Bartonella in Dr. Mozayeni’s office. Her brain and...

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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 ( Igenex lab in San Diego, CA is also a great lab to get started with. ( 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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