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It’s Lyme, Not Lymes

Posted on Jul 27, 2015 in Blog |

It’s probably the English teacher in me, but it drives me crazy when people call it “Lymes” instead of the proper name, Lyme.  If you are so inclined, feel free to copy and paste these graphics for your own use. Share...

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The Manuscript is Being Edited!

Posted on Jul 26, 2015 in Blog |

I gave my version of the manuscript to my co-author last week and he is now reading it!  I am excited beyond words!  He is happy with about 90% of the work done which is most excellent since he has only seen it twice.  We are working on graphics while he is working on edits.  I am VERY excited that we are close to the finish line!  Just wanted to keep everyone updated! Share...

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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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Infections and Co-infections

Posted on May 2, 2013 in Blog |

Day 2 – Infections and Co-infections When people say they have Lyme disease, they may have Lyme, but they more than likely also have one or more of the co-infections of Lyme disease. These include: Bartonella, Babesia, Erlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, Qfever, Colorado Tick Fever. In my family, none of us actually has Lyme. We all had Bartonella and Protomyxzoa Rheumatica. But if I start a conversation with people about these two infections, they will give me a blank stare. It’s simpler and easier to start with saying I have Lyme disease. These are unfortunately mislabeled as ‘co-infections’ when we believe them to be maybe even more common than Lyme disease. Lyme disease is primarily transferred through a deer tick. The co-infections have been shown to be transferred through cat scratches, fleas, biting flies, and mosquitoes. It has also been proven to be transferable in utero. None of us in the family had the same symptoms. It was hard to believe that we all had the same infections. Jeff had one strain of Bartonella; I had two; and Stephen had three. All three of us also had the Protomyxzoa Rheumatica. So far, I am the only one who has tested positive for the ‘variant’ of the PR (yet unnamed). My hope by the end of this month is that every time you hear ‘Lyme,’ your brain will also think of one or more of the following: Bartonella, Babesia, Erlichiosis, Rocky Mountain Spotted Fever, Mycoplasma, Qfever, Colorado Tick Fever or Protomyxzoa Rheumatica. And you will know that it is just as important to be tested for the co-infections as it is to be tested for Lyme disease. Share...

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What I have Learned That Surprised Me the Most

Posted on Apr 28, 2013 in Blog |

April 28th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth What have I learned about being a patient that surprised me the most? I was flabbergasted as I went through the initial process of getting the Lyme diagnosis and how many medical professionals chastised, degraded, ignored, and negated me as I asked questions to the get to the bottom of the issue. I was shocked by how many physicians threw prescriptions at me and even admitted that they would not look for the source of my pain. Rather, they would only treat me symptomatically. I have learned to: – listen to and trust my gut – advocate for my own health (and my family’s) – always ask questions – approach any medical professional as a team member; they don’t view it that way, I change physicians. – Once I find the right physician, trust him and work WITH him. Share...

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