In early May of 2015, my husband and 21-year-old son, Logan, took me to the Cincinnati zoo for Mother’s Day. We had been walking around for about half an hour when Logan sat down on a bench, put his head in his hands, and said, “If we are going to stay here, I am going to need a wheelchair. I can’t walk anymore.” My husband and I looked at each other, stricken. Logan was sweating and very pale. Our athletic son couldn’t walk around the zoo for an afternoon. We had been taking him to doctors for various “sports’ injuries” for more than two years. We had spent tens of thousand dollars on physical therapy and two surgeries that did not relieve Logan’s pain. When walking to his classes became too difficult, Logan had dropped out of college and moved back home. He did his physical therapy exercises with religious devotion, hoping to get back to school and volleyball. He began having headaches. His body alternated between fevers and chills. I remember looking at him one day that June and thinking, “You are dying right before my eyes. You are dying and I don’t know how to fix you.”
Fast forward two months to July of 2015. Logan, and I sat in a small lab in Tijuana, Mexico, alongside Dr. Manuel Lazo, as he looked at our blood under a dark-field microscope. On a large monitor mounted on the wall, we saw what we had come here to find: the spirochete Borrelia Burgdorferi, the parasite that causes Lyme disease.
I could tell you so many stories from that trip . . . stories of my exhausted son trying to make it through the long customs line to return to San Diego after a day at Dr. Lazo's clinic (Hospital Mexico); of taking bulging bags of Mexican prescription drugs through customs (without being stopped or questioned) and then flying home with suitcases loaded with boxes of Spanish-language antibiotics, antimalarials (for Babesia, which we had also seen in our blood), corticosteroids, and several other anti-parasite medications. We piled into our suitcases enough drugs to last three Lymies six months (there was a third person with us who has not gone public with Lyme so I will not out her here) and worried (needlessly) about getting through airport security.
That trip was the first step on the Lyme journey we have been on now for nearly two years. At the beginning, we took the desperate step of traveling to Tijuana because it was affordable and Logan could be seen immediately. Logan was supposed to be at a Florida college playing beach volleyball. But instead he was home, dragging himself out of bed to do all of the physical therapy assigned to him for his "volleyball injuries." He had already had surgery on an elbow and an ankle, neither of which had alleviated his pain. Then he experienced pain in both wrists but we were getting wiser. When he was told he needed two carpal tunnel surgeries, he refused. By this time, I was telling every doctor we went to that Logan had to have something systemic because it didn’t make sense that a twenty-one-year-old kid was experiencing so much pain and fatigue and unexplained illness. Some doctors were dismissive, others were sympathetic but stymied. Logan was tested for arthritis but x-rays showed nothing. There was talk of testing for auto-immune disease, but luckily, at that juncture, a dear friend began hounding me to have Logan tested for Lyme disease.
My college roommate, Jenny, posted regularly on FB about her family’s battle with Lyme disease. Upon hearing of Logan's ailments, Jenny convinced me to have him tested. But his test came back negative. Like many others, we would come to learn how devastatingly unreliable the CDC-approved test for Lyme Disease is and how much misery that unreliable test creates around the world. Luckily, Jenny is a persistent Lyme warrior and she kept hounding me. Eventually, a list of Lyme disease symptoms appeared in my inbox. After reading the list, Logan said, "I have every one of those." I looked at it and said, "So do I."
But here we are now, twenty-two months later, and we are as close to cured as anyone I've heard of who has had long-term, misdiagnosed Lyme disease. The suffering encountered by severely ill people in the on-line Lyme disease groups is overwhelming. People can't find knowledgeable doctors or if they can, it takes months to get in to see that doctor. Because there are so few of them, Lyme Literate doctors (LLMDs) are able to command exorbitant rates. Even so, they can't keep up with the number of patients. My son and I have done many, many treatments and I know now that we spent too much money. I know which treatments seemed to help while undergoing the treatment, but did not have lasting effect. I know the importance of rebuilding the immune system, eating a healthy diet, and what veterinarians know about parasites: deworming works.
The renowned Lyme researcher Dr. Alan McDonald brought us lasting wellness. In my opinion, his 2016 slideshow and lecture of very recent research saved us. If you want to get better, watching this as many times as it takes to understand it is Step One. There it is, right up front -- the most important thing I can tell you about getting better. But there is so much more to tell you about why we’re sick in the first place and how to stay well. I'm convinced that those of us who know about human parasitic diseases are going to be the lucky ones.
There is a saying that no-one does better research than a worried mother. After realizing Logan was slowly dying in front of my eyes, I became a frantic, obsessed researcher. I learned about ozone therapy and the differences between classes of antibiotics. I learned about crazy conspiracy theories and some not-so-crazy conspiracy theories. In the waiting room of our LLMD, I glimpsed what the real zombie apocalypse will look like: mangled people in wheelchairs looking for answers. I learned about coffee enemas, urine therapy, and the distilled water protocol. I now own a salt lamp and know the properties of some of the essential oils. I bought and learned how to use a microscope, for crying out loud. I am not the same person that I was in 2015. I am wiser. I wear latex gloves to apply topical medicine to my pets’ skin problems. I will never again eat sushi. I know what it means to detox. I sleep at night and wake refreshed. I don’t get migraines anymore. I’m happy again.These posts contain the information that I post over and over in answer to questions in the Lyme disease groups. I hope they are helpful.