Lyme Time with Paula Jackson Jones

A Midcoast Lyme Literate Center

Wed, 06/05/2019 - 2:00pm

It is hard to not get angry when you hear the things that people are sharing with you. Things that their medical providers are telling them. Its hard to believe that its 2019 and as much publicity as the tick infestation is getting, to hear old rhetoric being shared or worse is mind boggling.

For instance, in 2019 alone, I was told by a mother that her pediatrician told her that they do not treat children for tick bites or Lyme disease, that it will just go away on its own. I was told that children cannot contract Lyme disease. I was told that there is no protocol for children. I was told over the weekend by an adult that because they had Lyme before that they cannot get it again. Where is this coming from? I always ask who their medical provider is, and I am sometimes shocked, other times not, at the mere mention of the name I am given.

How is it that we have made it to 2019 and we are still fighting against a medical society that A) makes stuff up like this B) wholeheartedly believes this crap and C) how have these medical providers not been sue for malpractice? Clearly, if a medical provider believes this then their patients are getting poor medical treatment. Thankfully, these people have heard enough and learned enough to know when they are hearing bad intel and they reach out for referrals for medical providers that do know about tick-borne disease, how to diagnose and treat it for both adults and children.

Just last weekend, I met a young man whose personal journey with tick-borne disease paralleled my own. Tears welled up in my eyes as he told how he had to drop out of school, give up sports that he was once so good at. He told me that he didn’t like to share his story with people because they either didn’t believe him or they assumed he was doing it for attention. Again, where is this mindset coming from that we as a society can’t support people who are chronically ill with diseases that we may or may not fully understand.

I am so thankful that two years ago, I was asked to join the board of the Boothbay Region Health Center (BRHC). I was asked to bring my experience and knowledge to the board in hopes of getting their health center more experienced and knowledgeable about Lyme and tick-borne disease. Finally, an interested party who felt as strongly as I did that more needed to be done, more needed to be offered to patients who present with tick bites, who present with strange symptoms (post tick bite), who have strange rashes, who have had past tick bites. Over the past two years, I have done just that. Brought in the experts for training the staff about diagnosing tick-borne disease, what it looks like when a patient has a co-infection. I was thrilled when Jennie McNeil, FNP, a Lyme literate provider, was asked to join the staff at the Boothbay Region Health Center. Having an experienced go-to person when complicated cases come in — and believe me, chronically ill patient of tick-borne disease are complicated and have layers of symptoms to deal with — is vital within an endemic community. Someone has to be able to help people get better and not tell them to walk it off. Someone has to be able to help people of all ages because contrary to what is being said, ticks do not discriminate and thus people of all ages are at risk to contract Lyme and tick-borne diseases.

I think as a society, we’re so accustomed to got to the doctors when we don’t feel good, we trust in the testing and diagnosis and whatever script we’re handed as we go out the door. But watch the news carefully and you will see that what we’ve been told about things all along is now being called into question. From patients dying from misdiagnosed diseases to addiction problems. We need to address tick-borne disease infections early to avoid band-aiding lifelong pain management with opioids.

If I’ve said it once, I’ve said it a bazillion times, Lyme and tick-borne disease is not a cookie cutter disease. You cannot diagnosis it 15 minutes. Not all patients are going to respond to the generic, outdated scripts that medical providers are giving them. We are not a one-size-fits-all patient group. And above all, you cannot treat a bacterium that has a 30-day life cycle with anything less than 30 days of antibiotics and that is if a co-infection has not been ruled in or out. Co-infections complicate recovery and warrant further treatment.

I am so sick and tired of dealing with medical providers who are following old science, outdated guidelines and antiquated protocols. They are contributing to growing number of chronically ill people in our communities. So when BRHC offered to step up and help those in need, to become not only a Lyme literate center that treats tick bites and acute/chronic cases of Lyme and tick-borne disease but also offers acute/chronic care, wellness visits, physical exams, exercise/wellness, family medicine, geriatrics, holistic health, mental health, nutrition and pain management, I took them up on their offer and came on board. This health center offers appointments and walk-ins and they also take Mainecare, Medicare and most insurances and for Maine’s Lyme Community, this is a godsend. Finally, someone who will listen, someone who will understand and someone who can and will offer proper help.

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 or visit www.mldse.org