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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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Giving Me My Dreams Back

Posted on Apr 24, 2013 in Blog |

April 24th – I have accepted The Health Activist Writer’s Month Challenge to write daily about my disease. #HAWMC @wegohealth Write about something I taught my physician or my physician taught me. I sent this note over a year ago to my physician, but thought it was a good marker for how much healing can happen. I haven’t felt this ‘present’ in more than a decade. It’s been happening over the past two weeks. It’s an adjustment, truly. I keep looking around and seeing the world with a new pair of glasses. I am starting to be present for conversations, I am literally seeing more clearly, I’m remembering more data and remembering it better. I am working more efficiently. It’s just all a lot of change, requiring some adjustment. I knew it would get better, but when it gets this much better, it’s a tremendous emotional adjustment. I spent twenty years thinking I was losing my capabilities (and I was); thinking I would never get it back. It’s taken a year, but I’m starting to get it all back and it’s overwhelming and humbling. To get it back at the same time as my first book comes out and working on this second book, it’s a bit more to take in than I realized. It’s all good . . . just change. And we know how the Lyme patients love change . . . Didn’t realize all the head trash I had fed myself to account for my losses. A few sessions of EMDR therapy and that will be gone. Whereas you have been able to move forward in incremental steps to make your vision come true, I was stuck for two+ decades. I could see the dream, but I couldn’t work the steps forward. Now, literally in two weeks’ time, I’m getting the energy and mental capabilities back in a huge rush. It’s like coming out of anesthesia; you go from pure silence and darkness to the full rush of sounds, sights, and sensations in a matter of five seconds. It’s just a bit much to take in all at once. To you, you are just doing your...

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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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Helpful Labs and Websites

Posted on Apr 2, 2013 in Blog |

April 4th – List of resources for anyone newly diagnosed and comments on labs to use for accurate testing. First, the labs that I recommend. Please note I am not a physician and can only tell you my experience with the following labs from a patient’s perspective: Igenex.com – San Diego, CA – they test all the DNA bands. I believe I had The Complete Initial Lyme Panel done. It showed how many DNA bands tested positive. Galaxy Diagnostics in North Carolina – galaxydx.com – their testing has become more and more refined is the best testing lab for finding more than 26 strains of Bartonella. If you don’t recall a tick bite and you have cats, you want this lab to test the blood. I had the Bartonella ePCR, triple draw. Expensive, but amazingly accurate. Frylabs.com – Fry Labs in Arizona – If you are at this point, you are hopefully seeing a Lyme Literate Medical Doctor (LLMD). He will know what tests to order. Helpful sites: www.beatingbartonella.com www.whatislyme.com http://web.ncsu.edu/abstract/science/bartonella-3/ www.sharonlivingwithlyme.com www.tmgmd.com www.galaxydx.com www.betterhealthguy.com/ www.lymedisease.org www.wildcondor.com www.ilads.org http://overcominglyme.blogspot.com/ http://www.ladyoflyme.com/ www.lymenet.org http://myblindspotjourney.com/category/bartonella/ www.lymediseaseassociation.org www.publichealthalert.org/ www.lymeinfo.net www.lymefriends.org http://lymepedia.org/ http://lymechick.com/ http://lymediseaseaudio.com/ www.underourskin.com www.cheryllyme.blogspot.com/ www.joethetick.com/ www.lymepa.org www.lymetap.org www.freewebs.com/lymefacts/lymelinks.htm www.butyoudontlooksick.com For teaching children about Lyme Disease: https://www.facebook.com/groups/lymediseaseprotestresources/doc/223775761097157/ Share...

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