This is one of the more prominent conversations that I have with people every day of every week and there are many variables that play into the answer. The most common variable as to why a provider is unable to help someone, either get properly diagnosed or treated until they are better, is that they are following outdated guidelines and antiquated protocols.

Trying to treat a patient in 2018 who is chronically ill from a tick bite, who has been ill for some time with guidelines previously written in the mid-90’s that only address acute symptoms is a recipe for disaster. It does not take into account any co-infections nor does it reflect that not everyone is going to respond to the one-size-fits-all approach.

Many providers that I speak to, albeit briefly, state that, if they have any questions or concerns (this is after only seeing a patient for 15minutes or less), they reach out to their local infectious disease provider for answers and direction ~ who also just so happens to be following outdated guidelines and antiquated protocols for acute cases.

I’ve been contacted quite a bit from providers from CMMC, EMMC and several other medical offices locally and from around the state, asking to be connected to Lyme providers who are more knowledgeable about tick-borne diseases as they are currently dealing with a “complicated case”. Most of the time “complicated” infers that they have a patient who is not responding to the treatment they have been given and the provider has no idea how to proceed. Again, we are talking about acute to chronic and in most cases, involving more than one tick-borne disease = co-infection.

A patient with a co-infection is much harder to diagnose and treat because they present differently with symptoms and once you figure out what they have, it’s like a battle fending off the infections, either simultaneously or as they flare up. It takes a lot of knowledge and experience to properly treat a patient in this state and unfortunately, not every primary care provider has that.

If you’ve been sick for a while, not responding to treatment or your provider can not figure out what is wrong, you are most likely sent off to a specialist, right? That’s how it is with tick-borne diseases. You need to see someone who not only understands the complexity of the diseases but how to recognize and treat as well. Not everyone is treated the same way. There is no one-size-fits-all approach beyond the acute stage of Lyme. It manifests itself in each patient differently and as such, treatment needs to be uniquely defined and modified as needed to each patient.

With ongoing training for physicians readily available, I am asked, “Why aren’t more doctors getting onboard and becoming more experienced with chronic tick-borne disease.” My response is that is a conversation that you will have to have with your own provider. There are two standards of care where Lyme Disease is concerned and whichever standard your provider adheres to will determine your fate. One will either test you with unreliable tests and misdiagnose you or mistreat you and the other one will use tests that are ninety percent and higher reliable and will continue your care until you are no longer symptomatic.

There is a time period that the body can and will heal itself but not while it’s still under attack from infection and certainly not when co-infections have not been properly ruled in or out. If a patient remains symptomatic, denying them treatment is medical negligence. All too often it is these patients who reach out to our organization and get connect to the Lyme providers who runs the appropriate tests and determine that treatment is still warranted. Lyme providers are not quacks. They are medical providers who have the same if not more medical training and qualifications. They’ve gone to the best schools and have the mindset that learning is an ongoing process. They didn’t stop with what they learned (past tense), No, they realized that living in an endemic region requires ongoing education to stay atop the latest research studies and evidence-based guidelines and protocols. They choose to treat their patients until they are better.

So, just as medical providers are given a choice as to what protocols they want to follow, patients also have that same choice. Every day, we choose what to eat, when to sleep and whether to exercise or not. We have choices to live healthy or not so healthy. As we choose how to best take care of ourselves, when prone to an illness, we also have the choice of who we want to see to be treated. If your provider chooses to follow outdated medical advice, will you choose to do the same? Or will you seek out a provider who is knowledgeable and experienced with tick-borne disease, who can adequately diagnose and treat you.

With any health concern, you have the choice to seek out the best possible medical care. You have this choice. You can advocate for yourself and loved ones and choose a knowledgeable provider who will guide you towards a path of health and wellness. Choose wisely ~ your health depends on it.

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