By Sande Bargeron
If you have scrolled through this site at all, you have likely noticed in a few of my pages how I’ve talked about how much my life was humbled when I encountered illnesses that were not easily addressed or understood from the medical paradigm. Lyme disease is one such condition. I was introduced to this illness in my studies almost twenty years ago and it was one infectious disease that I paid a good bit of attention to because of my time interning with Nephrology. I chose Nephrology as an elective during my internship year and it was a great education- a deep dive in internal medicine and the effect of infectious diseases on the kidneys. One thing that stood out to me was that each time nephrology was consulted regarding new or worsening kidney failure, we would order a test for Lyme disease. I remember being intrigued by the similarity that the Lyme bacteria shared with syphilis- both being spirochete bacteria. It was a rich learning experience, but living in a southern coastal area, I really didn’t think this illness had much bearing on my upcoming practice, so honestly did not think about it again until I was confronted by it when Lyme disease affected my own family.
My first experience with this was with my 75 year old grandfather. I remember flying up to New Hampshire one summer to visit family and when I saw my grandfather and he was saying his goodbyes to everyone. This was a shock to me because my grandparents were both very independent- my grandmother was still working and my grandfather spent many days picking blueberries from his backyard homestead or researching. But by the time I saw him, he had been feeling terrible for several months, suffering with pain in his neck and arms, chest pain, weakness, fatigue, and had lost almost fifty pounds. He had been to numerous specialists, who ruled out all the obvious things like cancer, cardiac issues, but discovered narrowing of his spinal canal (which is tremendously common among all populations above the age of forty). In desperation, he was considering neck surgery because his pain was excruciating. But by the grace of God, when he went back for a second opinion with Internal Medicine, a young intern decided to check for Lyme. My grandfather did not remember having a bite from a tick, which is common in Lyme. Only 25 % of Lyme patients remember a tick bite.
My next experience caught me off-guard and taught me a lot about chronic Lyme. While on a mission trip to Ecuador, we had the privilege of working with a translator who had a medical background, having completed all but the last six months of medical school by this point. This was particularly helpful since we were doing medical service in the community. But, as we got to know one another, I discovered that she had a very weird combination of symptoms- sudden and rapid onset of double vision, severe and debilitating fatigue, bladder spasms, migraines, and neuropathic type pain in her extremities, along her spine.
Thinking through these symptoms as colleagues would, we spent a bit of time looking at the possible diagnoses, which she had of course already considered. She had been to an ophthalmologist, she had had CT evaluation of her brain to look for tumors and she had had a variety of lab work done. She ultimately ended up also seeing both a neurologist who ordered an MRI as well as a neuro-ophthalmologist! To shorten a very long story of discovery, she ended up with no solid diagnosis and being prescribed antidepressants and steroids. It was about that time when we discovered something interesting about her history- she remembers becoming very sick after returning home from visiting the US, over ten years earlier, where she had lived and worked with a ministry who provided cabins for the visitors in a highly forested area of Virginia. She recalled being very sick and hospitalized for almost three month when she returned home.
When I first suggested Lyme disease, she had never heard of this as it is not something commonly considered in the South American country of Ecuador, though according to the International Lyme and Associated Diseases (ILAD) organization, Lyme has been identified globally in every country. There was no testing for Lyme in Ecuador, though most basic tests would not be able to identify the Lyme at this level of chronicity. Tertiary, or neurological Lyme, is not easily identified on the standard Lyme Panel.
Having only ever heard of Lyme in the acute (immediate) form of Lyme (with the bullseye rash and an obvious tick bite), she and I began to research chronic Lyme Disease and we received quite an extensive education. I walked away humbled again by how much there was to learn about human disease, infectious diseases and parasites. I discovered through this research that I would have to continue being an eager learner for the rest of my and open to science that I had not yet understood if I was really going to help people.
One of the main things we learned in the process of sorting out the tools available to support Lyme was this: the main thing Lyme sufferers need to address regularly and aggressively is healthy drainage and support. The organs of detoxification in chronically ill folks including our Lymees are usually working at less than 20%, which is not good considering the fact that the body is in a constant state of hyper-metabolism, trying to kill the spirochete and associated parasites. Learning this was a practical education about healthy detoxification and why it was so important.
My next experience was even closer to home and equally as surprising- my middle child, then 7, started to have strange complaints: stomach pains, neck pain, hyperactivity and bladder spasms. Individually, these don’t seem like any particular red flag, and they certainly were not for me either. My oldest had been diagnosed with ADHD at 5 years old, so we clearly had the genetic potential for it. Tummy aches? Well, most kids get those. Neck pain? Maybe he just played too hard the day before. But there were bladder spasms that I could not explain. He would also later complain of unusual fatigue and weakness- definitely outside what you would consider normal for a 7 year old boy.
Eager to avoid taking medication for his hyperactivity, I began to explore dietary options, even diving headlong into the Feingold Diet and developing a highly restrictive diet for him. Of course this led me to more research, because, wouldn’t you know it, he really was calmer when we avoided certain preservatives, nightshades, and a host of other chemicals identified by the Feingold organization as neurologically toxic. The Feingold Organization has been in existence for almost fifty years and was birthed out of research by Dr. Feingold, an allergist from Kaiser Permanente.
To give you an idea of the significance of environmental factors on ADHD, let me share an experience we had with our son after we had eliminated all the triggers. We were returning home from visiting friends with a calm and happy 7 year old. Within minutes of being home, we noticed that he began to pace all over the house, narrating every thought that came to his head at an ever increasing pace. My husband and I looked at each other in bewilderment- what happened in the last five minutes!? Then we saw it- he was wearing a St. Patrick’s day necklace that he had fished out from the cushions of our sofa. The ink was literally making his mind erratic. We removed the necklace, tucked him in a bath with baking soda and epsom salt and he slowly recovered.
Long story short, we ended up being evaluated by an environmental specialist and had extensive lab work and testing done, only to discover more food allergies, mold antibodies and more. It was while working with this specialist that we discovered the connection to Lyme. By this point, his symptoms of neck pain, bladder spasm, occasional muscle weakness, fatigue and headaches became clearer, since we had eliminated so many of the environmental triggers.
As we began to address Lyme, we saw the classic pattern seen by many others who struggle with Lyme emerge: an adjustment of supplements and we are doing well… for about 6 months, then boom! Relapse. Repeated over and over. Even as we ramped up our detoxification methods, we discovered that this had to be done in a specific order and slowly. My love for caring for others who have had a similar struggle was born out of this experience I’ve had with those I love.
The process has been humbling but an opportunity for all of us to learn. The trial of not knowing how to properly care for my child during his pain and physical suffering has made me point to the only unfailing strength I know, my Savior. This honest struggle and desperate cling to Christ has affected my son’s heart also- he KNOWS that God is good, that He has never left him, and that He promises to bring glory from our suffering. If you are struggling with Lyme Disease or any other illness that leaves you feeling unheard, desperate and alone, I hope that you find strength and encouragement in knowing that you are never alone.
What is your personal story with Lyme Disease or any of the other silent illnesses (fibromyalgia, chronic mono, ect)? Share them in the comments!