Robin Reflects on Riding the Lyme Roller Coaster STILL on Mad Lymies Anniversary

IMG_3409 (1)Hello to all our followers and recent new friends! We haven’t posted in a while here as we have been feeling ok for the most part and a bit distracted by life. We have been working and going to school and living life’s events. I was coasting along through my third remission and enjoying raising my Maine Coon babies. Then, Babesia decided to strap into the seat and ride along beside me. When my LLMD and I determined that my raging sweats were not due to menopause and being as old as dirt, I went back on Meprone and felt better almost instantly. I was enjoying the ride so much that my immunologist decided to test my immune system by stopping my infusions. Two weeks later, in all my wisdom, I decided to stop meds for Lyme, Rickettsia and Bartonella since I felt so good. As any Lymie knows, once you stop respecting the power and resilience of the illness, your smooth ride screeches to a stop quickly.

I began experiencing the headaches facial numbness and fatigue of Lyme as well as the locking joints, eye pain and tippy feeling of Rickettsia. By last week, I could not walk-seriously. I went to bed fine and literally could not put weight on my left leg for 2 days. I immediately went back on my meds and started my journey chugging back up the hill. However, the hill was not so tall and within 36 hours, I was back to walking 2 miles again. It absolutely sucks that on this 1-year anniversary of this blog, I still cannot get off the damn meds. As we all know, misery loves company and as a psychologist, I know it is helpful to “be with” others in your situation. I also know I personally feel better when I think I am helping others so; I am back to blog!

This past year has resembled a roller coaster ride for both me personally, and the Lyme community. Personally, I have chugged slowly up the hills when infections were too strong, feeling both the dread of the climb and the anticipation of the ride down. My LLMD and I have battled each tick and parasitic infection with every tool we could find. I have experienced the fear of being stopped in my tracks at the precipice and trust me when I say I am NOT a fan of heights! I have ridden up small hills and enjoyed some symptom free coasting. But at the end of the day, I still cannot get off this f@#$#g ride lol!

This past year, I blogged and you-tubed about uninformed doctors, laws that are stalled, keeping pets safe, both living and travelling with Lyme and coinfections. Jess blogged about going gluten free. The Lyme community has been spreading both news and hope as well as fighting diligently this past year in courts and research labs. We are seeing progress in some changing attitudes towards patients and treatment protocols. Researchers are discovering why Lyme persists due to biofilms and efflux pumps and how parasites impact treatment and more. Promising research is also targeting possible cures, such as the recent UMASS findings! However, anything related to the federal tick born group or science in general, is basically chugging uphill VERY SLOWLY. This will likely be the case while DUMB AS A STUMP remains in Washington.

I have been humbled by the diseases once again and will not be complacent any longer. I am back on my infusions and meds. I am back to researching treatments. I am considering a new peptide treatment that my LLMD says works for “patients with immune issues who basically tread water and sink when they get off meds”. Sound familiar? Anyway, I will let you know how it goes. I will also blog or vlog about the specific coinfections and the parasite issues as I promised. Since there is a HUGE connection between people with Lyme and immune deficiency, I will share my experiences in this area as well. Check out my past blogs-especially Keeping Our Fur Babies Safe-as it is National Pet Month and Lyme Disease Awareness Month. Be safe and be informed! Please take care and share to make aware! Robin 😊

3 thoughts on “Robin Reflects on Riding the Lyme Roller Coaster STILL on Mad Lymies Anniversary

  1. I love reading your posts as it helps me understand your struggles. Even though there is not much I can do for you, I can offer my prayers and hope for better treatments or even a cure! Get that dumb as a stump out of Washington!


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