A slight change of perception in my column this week. I had the opportunity to speak with several medical providers whose patients have crossed paths with my organization. To say that the conversations were interesting would be an understatement.

Where I expected animosity and disrespect, I found none. Instead, I heard about the limitations that they are under and how much more they wished that they could do but were afraid to do so. This validated and confirmed so much but I was still willing to do whatever I could to bridge the gap for them where their Lyme and tick-borne disease patients were concerned. I gave them links to free education modules to learn more about Lyme and tick-borne disease and gave them information about the upcoming Lyme Disease Conference in Rhode Island where they can receive training from the medical experts and continuing medical education credits.

I heard exasperation in their voices. Knowing that the tests that they had to use were not reliable but not having enough knowledge about better testing options. I heard frustrations about patients who remained sick even after treatment and how the providers felt their hands were tied because of “how things are done here in the office.” No matter where you work or what kind of job you have, you’re going to encounter office politics. However, when the politics are such that you don’t even know why things are done a certain way and any time you question or pose a suggestion, it is dismissed and you’re fearful of losing your job, that will greatly impact how you treat a patient.

It is interesting the dynamics that take place in an emergency room setting. Multiple patients with similar complaints getting different treatment based on the level of experience and knowledge that particular ER provider has on a specific medical situation. Some recognize Lyme and tick-borne diseases based on symptoms and treat immediately while others will order tests, tests that are known to be unreliable, and based on the outcome of the tests, will either treat or send you home to follow up with your primary care provider if symptoms persist.

The medical providers that I spoke with work in various locations. One is in a medical office with lots of providers, one works in a hospital setting and one is now in private practice. The provider in private practice felt they had the most freedom with access to labs and testing facilities of their choice to properly and adequately diagnose their patient and felt no pressure or fear for treating their patients.

Hippocrates, the father of medicine, held the belief that the body must be treated as a whole and not in just a series of parts. He noted that there were individual differences in the severity of disease symptoms and that there were variations in how some individuals coped with and responded to treatment of their disease and illnesses. As a society, we know and have experienced this all too well. When we or a loved one has gotten sick, depending on the illness, we always hope and expect a positive outcome but sometimes that is not what we get. Sometimes it makes sense and other times it makes no sense at all. We can know two people with the same illness and watch two very different outcomes. It is as frustrating for the patient and the families as it is the medical providers. But when the providers hands are tied, it is even more frustrated.

Working against controversial guidelines, with limited knowledge and experience and limited time allotted with the patient is something that these providers stated over and over again was the crutch of their frustration. One provider was overheard speaking with their patient about treatment options offered elsewhere and was then spoken to by the office manager.

My question to medical providers is this: What other disease would you throw up such roadblocks for your patient? Would you treat a patient with cancer the same way you would treat a patient with Lyme and babesia? Would you cut off treatment and tell the patient to give it time? What if said patient approached you about something different and alternative that they wanted to try ~ would you dismiss it? Reject it? Mock it and the provider who is so willing to step up and do whatever it takes to get your patient better?

Hippocrates knew that no two patients were alike and to account and expect variation in symptoms and disease. So I ask you, will you stop putting all your Lyme and tick-borne disease patients in the same box? Will you be more open-minded and listen to what they are asking for? Would you be willing to co-care with another medical provider who just might have a little more knowledge and experience in the field of tick-borne disease if it meant offering your patient the best possible care and outcome? I’m asking you to stretch outside your comfort zone and stop putting us in a box.

Years after going into remission, I encountered a former provider who told me that “I was the greatest medical dilemma they could not solve” and yet even after sharing with them my diagnosis, treatment path and how I was now in remission, they shook their head and didn’t believe me. Do No Harm is what your patient expects from their medical provider and harm is exactly what is being done by treating them all the same and I know this from first hand experience.

Paula is the president of the MLDSE, the co-chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine-partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org and visit her website www.mldse.org