In Doctors We Trust
Have you ever been told you were crazy? Or that you are so sick no one will be able to help you? We have, and by those we are told to trust with our health. Doctors. Now, let me start by saying that not all doctors are bad and that doctors are good for certain things such as trauma and prescribing medications. However, I am going to shed some light on what it is like getting diagnosed with Lyme Disease.
For most, it takes years to find a doctor who will A- listen to us and B- believe us. It takes numerous MRIs/CTs, EKGs, EEGs, ridiculous amounts of blood work, therapists, and specialists. And generally the only doctors who do help us are Naturopaths. Why is this you may ask? Naturopathic doctors want to get to the root of the problem, not mask every symptom with prescriptions.
The number of Lymies who have PTSD from doctors and hospital visits is astronomical. The stories I have heard from my fellow Lymies makes me sick to my stomach and causes my anxiety to come racing back. I too have PTSD from doctors. We have had doctors tell us it is all in our heads, tell us they simply cannot help us, or worst of all say, ‘You don’t look sick, there is nothing wrong with you.’
The symptoms that come with this disease (caused by co-infections) vary in every patient. Anything from vision problems, muscle weakness, bladder issues and pain. These symptoms may come and go and get worse or better over time. Can you imagine how many times we have had to go to a doctor’s office/clinic/hospital with a new symptom, questioning our own sanity on the way? Having anxiety and panic attacks before even getting there because we know what will be said? It is almost as bad as the debilitating symptoms we endure daily.
Some of you may be wondering, why does this happen? Western doctors are not generally trained to manage disease, so often they are just as lost as you are. And when they are, they send you home with a slip of paper, a referral and no real answer as to why you have pain all over your body or why you cannot remember what you did the day before.
How does this all tie in with Lyme Disease? Well, it is next to impossible to get proper testing anywhere but in Germany and a couple of clinics in the United States. A lot of us get tested for the Lyme bacteria called Borrelia Burgdorferi (which is the least of our problems with this disease) and it usually comes up negative with general testing. If it comes up negative, they send us on our way.
When someone contracts Lyme, they are infected with co-infections. And sometimes there is no bulls eye rash or any other indication that we were bitten by a tick. The co-infections of Lyme are what causes the strange array of symptoms. Neurological symptoms? Come from a bacteria called Bartonella. Headaches, nausea, fatigue? Comes from a bacteria called Babesia. Joint pain, confusion, fever? These can come from a bacteria called Ehrlichia. So when we are tested for ‘Lyme’ they do not test for these bad boys and we are left battling a horrible undiagnosed illness.
When I was six years old, I was diagnosed with a bacterial infection called Bell’s Palsy, which causes paralysis to one side of your face and is caused by…you guessed it! Lyme Disease! And guess what came of that? Nothing, no treatment, no further testing, nothing. Every single time I went to the ER in the last decade my parents told the doctors about me having Bell’s Palsy and not one doctor even suggested that I get tested for Lyme. Would my life have gone completely different if someone 21 years ago decided to test me for Lyme? Absolutely. And why didn’t anyone? Because Chronic Lyme Disease is not recognized by the healthcare system anywhere in the world.
I would like to end by saying this: be an advocate for your own health. Be open to seeing different types of doctors and never let someone tell you how to feel. In the end, this is your journey, your life and your body. And no one knows your body better than you do. Do not stop believing in yourself and do not let someone our society is supposed to trust tell you that you are crazy.
By Dana Lee