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Co-infections, Co-infections, Co-infections

Posted on Oct 27, 2017 in Blog |

In the past few weeks, I have talked with several newly diagnosed individuals. Three of them had never heard the word “co-infections.” Thus, they had never heard of Bartonella, Babesia, Erlichiosis . . . and the list goes on. It can be frustrating to educate people about Lyme itself. It can be doubly frustrating to bring them up to speed about the co-infections as well as Lyme. The amount of mis-information about these diseases is overwhelming. I encourage each Lyme patient to find a Lyme Literate Medical Doctor (LLMD) to help you navigate your way to health. And work with your LLMD as a team. One thing that drives me insane: when a patient has an appointment with their LLMD, they develop a new plan for treatment, and then the patient goes on line and asks other patients their opinion of the plan. If you still have questions about your plan, ASK YOUR DOCTOR! Do NOT ask a thousand people who do not have a medical degree, are not familiar with ALL the details of your history and current state. If you feel you can’t work with your LLMD as a team, find a new doctor. I encourage you to read articles from www.whatislyme.com, galaxydx.com, lymeadvise.com, igenex.com, and other Lyme savvy websites. In Lyme Savvy: Treatment Insights for Lyme Patients and Practitioners, we cover many of these co-infections. I encourage you to read it. A note to the new readers: I originally tested positive for Lupus and Lyme. Better testing from Galaxy Diagnostics showed I was positive for Bartonella. I was then treated for Bartonella. And after that treatment, my next Lupus and Lyme tests were negative. It took a smart physician to figure out what I had and how to treat it. Share...

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We Don’t Have Lyme Disease in Alabama

Posted on May 2, 2017 in Blog |

The only information I knew about Lyme Disease in 2009 was what I had learned during my Aunt Betty’s illness from 2000 until 2002.  My aunt’s story is the worst of all stories: refused a lyme test by her internist, she fought for a year to be diagnosed correctly.  She had the classic tick bite and EM rash, but because of the arrogance and narrow-mindedness of one physician, Betty could not get the test nor the treatment she needed for a full year.  Before being bitten by a tick in her yard, Betty was a vibrant clinical psychologist and tenured professor, teaching psychology courses to master’s level and doctoral candidate students at Auburn University, religiously attending every home football game in her orange and blue. Betty was a “typical” Auburn fan, singing the fight song every week, shouting “War Eagle” when a stronger defense was needed, and crying when the Tigers lost. Betty grew up in Auburn. She earned her undergraduate degree at Auburn. It was home. Teaching at AU was her lifelong dream.  Betty and her husband Troup lived on eight acres on the outskirts of Auburn, Alabama with their horses Sid and Kallie, and their one-eyed goat, Jack. Betty took riding lessons with Kallie on occasion, but mostly, Betty loved nuzzling with her horses and feeding Jack any spare apples she had. She had a good life with a job she loved, a long, happy marriage, a grown son, and a home she and Troup had designed more than a decade earlier. Betty was physically fit, strong, and one of the most attractive women I have ever seen. She could have won any beauty contest with her trim figure, tall stature, and impeccable taste in clothes. Betty was no wallflower.  Her beauty and style brought everyone’s eyes to her as she entered any room.  She felt throughout her life she didn’t necessarily fit in with the crowd, but those around her wanted to fit in with her. She spoke her mind.  She would debate and convince those around her to embrace everyone’s differences and vulnerabilities. In June 2000, Betty went to her internist, complaining of a rash...

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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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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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