I am sharing my lyme story with a reporter who is sharing about Lyme disease and the affects it has. I want to make sure that this stays “my” story and am posting it here first. If you know it, you don’t have to read it again. If you want to be reminded of how important prevention is, and how much you need to understand the symptoms, read it again. I could on so many different levels been diagnosed at one time or another with: Lupus, MS, Alzheimers, fibromyalgia, rheumatoid, chronic fatigue, Meneres, and so much more. Between all of my symptoms, it’s crazy I didn’t get into one of the above throw in groups. Question your symptoms, question the doctors and ask WHY. Huge game changer when you start asking why and start doing your own research.
My Lyme story began long before I understood that it had. On a camping trip in the early 80’s to the eastern states I had become ill. Not thinking it was more than just exhaustion or something of that sort, I went along as normal. Approximately 1-2 months later, as I began my High School journey, I began having symptoms, of which at the time, the doctors had no idea what was going on. I was falling asleep every afternoon, I began having migratory pain in my legs, I had migraines and I also began experiencing Supra Ventricular Tachycardias. For someone my age, doctors had no idea what was going on. I grew up in MI and so even though Lyme was picking up attention in the east coast, no one really knew how to deal with what I was experiencing in MI.
My sophomore year in HS, I also had water on the knee, with no injury. This is classic for Lyme patients. I spent several months on crutches and it eventually was better. I continued throughout HS to have the above symptoms and in my mid 20’s my SVT’s were so bad that I ended up having a heart ablation. Again, the doctors could not understand why I was having them.
When I became pregnant with my first child, I “strange looking” stretch marks in places my doctor had never seen before for a pregnant woman. I found out later that these were bartonella markings. Our first child had a coroid plexus cyst on his brain, which ended up being nothing and he was born normal. Our child did experience, allergy type symptoms, unknown fevers, food intolerances all of which were strange to us since we had not had these types of symptoms in our family prior.
Fast forward a few more years, both of our children started having bartonella tracking, around the age of 8-10. They both were diagnosed Hypo thyroid and their adrenals were a mess. As for myself, their labs mimicked mine. I too was diagnosed with hypo thyroid, EBV, adrenal dysfunction, food intolerances, etc. Yet, no diagnoses. I was tested in my 30’s for parasites, rheumatoid, fibromyalgia, and so much more. Still no diagnosis.
In 2013, we now live in WI, I am tired and my adrenals are a mess, yet I keep going with my life as best I can. I remember starting to have trouble with my right ankle that summer. For over 2 weeks I felt like I was dragging my right foot. I was too busy to worry about it and thought maybe it was pinched nerve that needed to work itself out. I also noticed that when I was working in my garden I was getting dizzy and wobbly at times. This never happened to me.
Fast forward two more weeks and I fell asleep on the couch, which I never do, only to find that I could hear everything around me. I could not however, open my eyes. I had to physically use my hands to open my eyes and head to bed. I slept 10 hours that night, came downstairs the next morning only to find that I couldn’t stand up, was so exhausted I couldn’t function. I collapsed on the couch. I started having chills, felt sick, and was experiencing the worst exhaustion I’d ever felt. After a few days, it continued and I called my doctor. I was told that with the fact I go out to a farm, have two gardens of my own and I am outside most of the time, I should be tested for Lyme. I was also test for rheumatoid again. We did not do the CDC Lyme test, my doctor directed me to the IGenix test immediately. As the 3 weeks went by waiting for the results, I began having excruciating pain in every limb and throughout my body. I couldn’t remember names, I was having a hard time with cognitive thought, I was sleeping at least 18 hours a day if not more, I was confused and disoriented. When the testing came back positive I was relieved to have a diagnosis. I was very positive for Lyme and then co-infections. I sought out a medical professional that treated Lyme, of which took a more alternative and natural approach. I was happy with that and spent 2 years treating this way. While treating the Lyme this way, I also saw a chiropractor weekly, did weekly messages, had acupuncture every few weeks along with crystal light therapy, and I continued to be sick, I thought my life was going to forever be the way it was. I was bed bound for 10 months at the start and I ended up purchasing a wheelchair for anytime I needed to walk. If there was an activity, I had to sleep and rest for 3 days and then after the one day activity (of which I was only able to participate for half of it) I would have to rest 4 days later. My brain fog continued, I continued to have sharp pains that came out of nowhere at the most inconvenient time, I was dizzy, I couldn’t’ drive, I had terrible memory loss and word recognition was awful. I still couldn’t walk to the end of the driveway. I had acquired a virus that attacked my heart, I was dealing with Mycoplasma Pneumonia, EBV, Lyme, co-infections, diagnosed with Hashimotos and more.
After 2 1/2 years of this treatment plan, I decided to try another LLMD that treated with antibiotics. After just one month of antibiotics, I began to notice a difference. After 6 months of antibiotics, at high doses, a cocktail of 3 at a time, I was shocked to see the difference in my quality of life. My coughing was gone, my pain in my limbs was getting better, my brain fog was clearing up, I did not need the wheelchair any longer, I could actually participate in life experiences without having to rest days before and after.
Three years on high doses of antibiotics, changed out every few months, high pro and probiotics and changing my diet to accommodate, I can say I am almost completely in remission. I am trying a last treatment option which I am confident will close the box on Lyme and I will be officially in remission.
I am a Disney fan and have had several annual passes. I can now go to Disney without using a wheelchair, I can walk 9 miles in a day and do it again the next, I am thinking clearly and my brain fog is almost completely gone, I no longer have cognitive issues or work recognition issues other that that which is normal for my age which in my 50’s.
When my health started to return, I volunteered with the Wisconsin Lyme Network and have since become the president. I volunteer my hours trying to educate and bring awareness to this disease that is not the highest vector borne illness in our country and in many parts of the world. Our numbers are more than double that of breast cancer, far more than west Nile, and so much greater than even HIV. Even with these staggering numbers, our society and our communities do not understand what a small insect is capable of doing to the human body. Carrying infectious disease and destroying the inner workings of the body. We need to get the medical community to efficiently treat, diagnose and care for patients with accuracy, and we need our communities to take prevention seriously.
You may ask, why after so many years, did I “do ok” with my circumstance? We believe that either a second tick bite while I was working at the farm or a stressful situation triggered my full blown response. Adding in the story of my children, they both contracted it through me when I was pregnant. Of which, after all these years, the CDC has FINALLY admitted that transmission is “possible” through pregnancy from a mother to the child. This of course I’ve known for years, especially after watching Under Our Skin, documentary.
