Lyme Life to Lime Light Chapter 2 - Treatment and Trials
Updated: Feb 12, 2019
So you've got Lyme... now what? I had been relieved to have finally been given a reason for the insanity my body had been displaying, but it seemed that treatment would prove to be at least as difficult a journey. While it is generally agreed upon that Lyme is easily treated by a short course of antibiotics if caught immediately after being bitten, treatment for those not quickly diagnosed, or in the "Chronic" stages of Lyme infection, is far more difficult and filled with debate.
This seems to be another point where either mis-information, lack of research, or even conspiracy creeps into the picture again. My Doctor who was committed to the journey with me admitted his limited knowledge of treatment, but said that it couldn't hurt to start with the course of antibiotics that would be prescribed to someone who was in the early stages. So I started Doxycycline, with a "if it works... GREAT!" attitude, seasoned with some realistic pessimism. In the meantime we began digging into reseach of treatment methods, specializing doctors, lyme organizations like CANLYME in order to make a plan. In this we began to recognize again how rare it is to find people who are "in the know" with Lyme, and we found only one practicing doctor in Western Canada who was known to be "Lyme literate".I was able to get referred to this specific doctor in Calgary, but his waiting list was exceptionally long (we were initially told 18 months!)
This was another moment where we felt the hand of God on our story. In spite of the Doctors brutal waiting list, a nurse within his staff connected with me and asked me to come in for an initial meeting, only weeks after having been referred. She said something jumped out at her from reading my file and felt that it was imperative that I get in soon. Though I wsa not able to see Dr. H, his staff were phenomenal, and for the first time in the process I felt understood. Though so much of my story was a mystery to everyone along the way, this team of people knew and could predict almost every aspect of the story.
They were also able to give me a list of "non prescription" methods, naturopathic doctors to see and natural recommendations to do in the mean time. This started a regime of IV treatments, where I weekly had a cocktail of things injected into my body. That's when I learned the word "Herx". The herxheimer effect is what happens when lyme bacteria die. To oversimplify it, basically, the bacteria self destruct mechanism makes you feel worse, symptoms intensify, and generally make you want to avoid killing any more of the filthy spirochetes. Every week that I received these IV treatments... I got an accompanying herx reaction. The saying "It has to get worse before it can get better" became a staple in my diet as week after week I got my butt kicked.
Then I met with Dr. H, and we began several courses of antibiotics designed to trick the bacteria into not hiding, in order to better kill the bacteria overtaking my body. The Herxes intensified. On top of the regular symptoms, and the herx, I also began to have issues related to the prolonged use of antibiotics. The cure, it seemed, was becoming as bad as the disease.
It was in the midst of this, that I lost my ability to work. I say that with a bit of a grin, because in reality, my abilities had degraded so much that I wasn't really able to do much of my job in the time leading up to my departure. I did whatever I could, whenever I could, the best that I could, but in honesty, I was probably more a hindrance than a help. Effective January first 2017 I was no longer employed with the youth centre, and began to focus on just staying alive.
Then I met with Dr. H, and we began several courses of antibiotics designed to trick the bacteria into not hiding, in order to better kill the bacteria overtaking my body. The Herxes intensified. On top of the regular symptoms, and the herx, I also began to have issues related to the prolonged use of antibiotics. The cure, it seemed, was becoming as bad as the disease. That was when the treatment strategy changed again. This time, the hope was not necessarily to cure me, but to make life livable.