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Rebecca Wells on Lyme Disease

Posted on Jul 26, 2015 in Blog |

This story was written i think back in 2005, but i found it most helpful. Dear Readers, I have advanced neurological Lyme disease. It affects the way I think, move, write, read, eat—every aspect of my life. During the same time in 1998-1999 that my novels, Divine Secrets of the Ya-Ya Sisterhood and Little Altars Everywhere introduced the Ya-Yas to millions of readers, I was becoming very sick and did not know it. At first I thought I just had a recurring case of bronchitis. I didn’t foresee the difficult journey that lay ahead of me. Things went from one weird symptom to the next, then a whole cocktail of symptoms kept developing. I stopped saying, “Things can’t get any worse than this.” Because they did, again and again. Years went by in which I did not know what was wrong with me. I was told maybe I had a brain tumor, perhaps epilepsy; maybe I had dystonia, maybe if I took the latest miracle anti-depressant all my symptoms would magically disappear. (Pause very carefully if ANYone tells you that.) In the last seven years, my symptoms have included respiratory infections, intense muscular skeletal pain, severe fatigue, Multi-Chemical Sensitivity (MCS), hunger for air, extreme sensitivity to light and sound, seizure-like events, and freezing hands and feet (probably due to peripheral neuropathy). Weakness in my lower limbs has been one of the most dangerous symptoms because it can—and does—lead to falling down. At times I was so deeply fatigued while writing Ya-Yas in Bloom that I could not lift my hands. I often had to use a wheelchair to get to the door of my writing room, then be lifted by my husband into my writing chair because the door was not wide enough for the wheelchair to get through. To finish Ya-Yas in Bloom I had to accept the situation I was in and find ways to work that respected my limitations. I realized that I was being given small packets of energy to be used wisely. Once I accepted this, I was able to complete the book. Like any act of creation, whether baking a pie or chopping wood, creativity can dispel the dark. Ya-Yas in Bloom reminds me...

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The ABCs of Ticks

Posted on Jul 9, 2015 in Blog |

Note from Sharon: I don’t personally care for the Mayo Clinic’s way of diagnosing and treating Lyme disease, but I do think the following link has some good information and an interesting way of presenting the information. Thank you to Carol Pearson for sending this to me! From the Mayo Clinic: Share...

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What to do if you have a tick bite in Virginia

Posted on Jun 8, 2015 in Blog |

***In Virginia, up to 50% of ticks can carry Lyme disease or other infections. ADVICE ON TREATING TICK BITES (from Dr. Joseph Burrascano, the longest treating physician for Lyme in the U.S.): “…The physician cannot rely on a laboratory test or clinical finding at the time of the bite to definitely rule in or rule out Lyme Disease infection, so must use clinical judgment as to whether to use antibiotic prophylaxis. Testing the tick itself for the presence of the spirochete, even with PCR technology, is helpful but not 100% reliable. An established infection by B. burgdorferi can have serious, long-standing or permanent, and painful medical consequences, and be expensive to treat. Since the likelihood of harm arising from prophylactically applied anti-spirochetal antibiotics is low, and since treatment is inexpensive and painless, it follows that the risk benefit ratio favors tick bite prophylaxis.” TREATMENT CATEGORIES TICK BITES – Embedded Deer Tick With No Signs or Symptoms of Lyme. Decide to treat based on the type of tick, whether it came from an endemic area, how it was removed, and length of attachment (anecdotally, as little as four hours of attachment can transmit pathogens). The risk of transmission is greater if the tick is engorged, or of it was removed improperly allowing the tick’s contents to spill into the bite wound. High-risk bites are treated as follows (remember the possibility of co-infection!): 1) Adults: Oral therapy for 28 days. 2) Pregnancy: Amoxicillin 1000 mg q6h for 6 weeks. Test for Babesia, Bartonella and Ehrlichia. Alternative: Cefuroxime axetil 1000 mg q12h for 6 weeks. 3) Young Children: Oral therapy for 28 days. Reference: ADVANCED TOPICS IN LYME DISEASE DIAGNOSTIC HINTS AND TREATMENT GUIDELINES FOR LYME AND OTHER TICK BORNE ILLNESSES, Sixteenth Edition, Copyright October, 2008, JOSEPH J. BURRASCANO JR., M.D. TO REMOVE ATTACHED TICKS: Use fine-tipped tweezers or shield your fingers with a tissue, paper towel, or rubber gloves, when removing the tick; otherwise infectious agents may enter through mucous membranes and breaks in the skin. DO NOT use petroleum jelly, a hot match, nail polish, or other products. Grasp the tick as close to the skin surface as possible...

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From Head Lice to Co-Infections of Lyme Disease

Posted on Mar 26, 2015 in Blog |

From Debbie Kushner, a friend of mine At my son’s school this week, my gentle suggestion that lice were not merely a nuisance but also a possible vector for infections like Bartonella was met with disbelief since the school nurse couldn’t find anything during a quick Google search from NIH. Clearly, she felt I was mistaken. I know you all have encountered this before. No one believes us until it is too late. I’ve been corresponding with Amanda Brickman Elam, president of Galaxy Diagnostics, offline this morning to gain some recent research to help support my position as well as educate the school nurse. Amanda asked that I share what we discussed. As Amanda says one of her favorite quotes is from Mother Theresa: “we can do no great things, only small things with great love.” Educating one school nurse is a small thing, but could be important for each community. Amanda told me the NIH and the CDC have not updated their Bartonella postings in nearly 10 years! She shared some links to recent research that do make a strong connection between head lice and the transmission of Bartonella. and there have been quite a few publications documenting Bartonella head lice around the world. Here are some of the research publications that support the transmission from head lice to people.… This study is from CDC Bartonella research team, led by Mike Kosoy: She also said that both body lice and head lice can infect the head, and they look quite different. Body lice can carry a number of different pathogens. I truly believe that as a community, each one of us, with exposure to different populations, can help turn the tide and educate our friends and neighbors. Share...

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Getting Through the Rough Times with Lyme Disease

Posted on Oct 3, 2014 in Blog |

I received this wonderful note (below) today from a friend who also battles Lyme disease. Both she and her boyfriend have been in treatment for a few years. I bring this to light not to brag, but rather I wanted to contrast it with a chapter that Jeff wrote that will be going into Lyme Savvy. Realistic or not, numerous people have assumed that Jeff and I have always been “on the same page” together and that we have always been 100% supportive of one another. When someone mentions this to us, we try to give a realistic picture of our relationship. We don’t want to be on a pedestal. We have spent years struggling to keep it together. We just happen to be in a really great place right now. So now you can see the big picture: the good, the bad, the ugly, and the profoundly amazingly wonderful. It was very hard for me to read through the first part of Jeff’s chapter. Those moments are still stuck inside me in a very tender place. Even knowing where we are now, it is hard to take that look back and remember. But remembering allows me to cherish how far we have come. If you are struggling in a relationship, know that if you both want it to work and you both are willing to do whatever it takes to make it work, you CAN make it work and you can succeed as a couple. Hang in there. “I wanted you to know, that X and I would not have made it through much of the “bad days” (or months, or years?!!) without your loving advice. We always looked up to you and Jeff so much as you all stuck by one another’s side through it all. All of the advice you have given us over the years has really paid off. I am so glad that you were there from the beginning to support us and encourage us to just be there with on another. Because we did that, we never thought of our “bad (physical) days” as “bad days” because we were together, doing what we...

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