My story, thankfully, is not as tragic and debilitating as some who have unfortunately found themselves with the diagnosis of “Chronic Lyme Disease.” I lived in CT my whole life and was very familiar with Lyme. Everyone knew someone who had it! No biggie - just take Doxycycline, right? Well anyone who was diagnosed years too late or didn’t receive proper treatment knows all too well this is not an easy fix.
The average chronically ill person with Lyme sees an average of 21 doctors before they are diagnosed! I was lucky. Once I realized I was really sick, it took just a few visits, the second being a Lyme literate MD, to figure out I was sick with not only Lyme but two forms of Babesiosis, Bartonella, and Ehrlichiosis. I had won the deer tick lotto!
The frustrating thing was that your average doctor is not familiar (nor believes in) chronic Lyme, let alone all these co-infections! These bacteria are all very difficult to test for and even more difficult to treat! Finding the right doctor is key. Then finding out what treatment will work for YOU as Lyme lands in everyone differently.
During this same time my son, Oliver, was also diagnosed with Lyme. That is his story, which he will share later. Oliver missed the better part of the sixth and seventh grade. It was so hard because from the outside, often, we really looked okay. No one really understood how miserable this disease makes you feel inside. On top of that, it’s exhausting having to explain this to healthy people. It felt so awful at times that I would end up telling people that I was sick with the flu or some other random ailment because I’d be too exhausted to explain what was actually going on inside me.
Even my family, who knew and comprehended this, would forget about my illness at times because I looked relatively normal. They’d wonder why I did not want to climb the stairs, cook dinner, or go on a hike (“are you kidding!?”). It was hard on them too. I could not work, became depressed, gained weight and was starting to come to terms with the fact that this was going to be my life. I had some better days…some worse days, but never felt good at all.
The chronic fatigue and nausea were constant, while the acute pain and brain fog came and went throughout the day. We bought an infrared sauna, which helped. I tried acupuncture, RIFE machine, massage and every tincture under the sun.
Finally, after moving to Maine almost two years ago I began to get better. I was getting cold laser therapy, which is where I turned the corner! I was already sugar, gluten and dairy free (for the most part) and this also helped immensely with inflammation.
My advice is to never give up on the hope of feeling well someday. I am not completely symptom-free, but I am FABULOUS! I can hike, play tennis, cross-country ski and go to the gym! This is unbelievable to me! If I had even gone on a small hike just a year ago my body would have reacted so adversely I’d be in bed for hours afterward.
So keep trying things, talking to others who have found a way out and just know that there is so much hope.
It is possible to feel better, but the only way to truly feel good again is to believe that you can do it yourself.