To the Editor:
We can’t wait any longer, we need to act now. There is plenty of science out there to prove that there are more effective ways to treat and diagnose Lyme than what is being practised in our province.
Our story is all too common in the world of people living with Lyme. Since the Municipality of Pictou Co. published a letter on FB about our recent presentation we have had an overwhelming response.
Here is what needs to happen: let’s stop doctor bashing and put our energy into change.
We have doctors in this province who understand the complexity of the disease and the necessity to provide longer term treatments than currently accepted as status quo. These doctors understand the battle folks face in eliminating this and other vector-borne illnesses from their blood stream, spinal column and brain. The problem is these Lyme literate doctors live in fear of repercussions or potentially losing their license if they do help.
Here is the solution: Put parameters in place to protect our Lyme literate doctors who want to treat the way they feel necessary and to be able to clinically diagnose.
Hundreds of Nova Scotians now travel to Maine for treatment because a group of women gathered together with a mission to protect doctors in Maine who wished to treat Lyme patients outside of the CDC and IDSA and use the ILADS guidelines if they feel necessary. We can do the same, and we will.
Hundreds of Nova Scotians travel to Maine because they know they are dealing with a monster of a disease which is being overlooked/misdiagnosed or not treated adequately. They are willing go to great lengths, as we were, to find help for our children or ourselves. The rest of us just get sicker and sicker. The doctors we speak of are brilliant and have dedicated their lives to saving many people and in our experience they have not in any way taken advantage of us monetarily.
We know not all doctors will be on board with this change, they don’t need to be. Sometimes it takes a physician to have a personal experience to truly dive deeply into the complexity of this disease and want to treat their patients property; sometimes it takes a doc with guts, and sometimes it takes a doc with sheer curiosity. We don’t care what the motivation is, we just want you to feel protected and help us.
I also wanted to bring to the forefront the idea of post Lyme symptoms/chronic Lyme and any other name we want to call it — it’s essentially all the same thing, a case of treatment failure.
Many folks say the key to change is education; we would say that is true. However, if we wait for the curriculum to change at a university level for our docs, it will be too late. The steps mentioned above will allow change immediately and the rest of the system will have to play catch up. Maybe someday there will be a better option than long-term antibiotic treatment, however, there simply isn’t at this point so let’s do what works for now and ride the wave of advancements in treatment as they come available.
We are not doctors or scientists; we are two women who have been forced to dedicate our lives researching Lyme and feel as if we can stand up to anyone who wants to downplay the severity of this issue with science. This is the beauty of being a civilian, we can speak out without restraint by government bodies, medical societies etc., and I bet, we are saying things that many physicians/patients want to say but feel they can’t.
To those who want to squash this letter, please don’t respond with a Band-Aid approach or outdated science. We simply would like to acknowledge that we might have got this one wrong. Our desire is to move forward with a sense of urgency and start to remedy the wrong. It’s okay that we got it wrong, it’s okay that this issue wasn’t taken more seriously; there have been many times in history where there have been health crisis similar to this and have since been taken under control.
We have arranged for three doctors to hold information sessions at the Pictou County Wellness Centre. These doctors are of particular interest to us because of their devotion to disease, their bravery and their personal experiences with Lyme: Dr. Marty Ross, Dr. Richard Dubocq and Dr. Vett Lloyd.
Lyme Disease Awareness Event, September 6: Healthcare providers (private session) 4:30-6 p.m., public session: 7-9 p.m.
We have been in correspondence with the ladies in Maine who are responsible for making the change in the laws to allow Lyme literate doctors more freedom in treatment and diagnosis. We plan on taking their lead and making the same change for our province.
Let’s band together and unlock the handcuffs on our doctors and let the healing begin.
Amy Hayne-Desjardins, Little Harbour
Jennifer MacLean, New Glasgow