Lyme Time with Paula Jackson Jones

Come on, let’s work together

Sun, 11/12/2017 - 7:15am

There’s a catchy song Canned Heat released in the 1970’s that goes as follows:

“Together we stand, divided we fall
Come on now people, let's get on the ball and work together
Come on, come on let's work together, now now people
Because together we will stand, every boy every girl and a man”

There is something to be said for working together. English writer John Heywood once said, “Many hands make light work” and the implied meaning was that many hands help make a large or difficult job easier. Like being chronically ill. The more help that a patient has, the better they are of being properly diagnosed, treated and making a full recovery ~ at the very least, it lightens the load that they carry on their journey to health and wellness.

We are into week 45 of 2017 and Lyme and tick-borne disease continues to rise with new cases are still being reported. But what is far worse are the number of cases of people who remain sick and without direction or medical assistance to get better. Why is that? It has everything to do with the controversy within the medical world of how to treat a patient. One group of physicians follows the school of thought that 14 days of doxycycline will “cure” the patient while another group says they will treat the patient until they are no longer symptomatic, running blood tests and continuing to address symptomatic issues. Now this doesn’t necessarily mean continuing with antibiotics. It could mean fixing what broke in the process. But it always means standing by the patient until they are well again.

Another part of that popular tune goes:

“Before when things go wrong, as they sometimes will
And the road you travel, it stays all uphill
Let's work together, come on, come on, let's work together
You know together we will stand, every boy, girl, woman and a man”

Not every medical provider is knowledgeable about Lyme and tick-borne disease. While the federal CDC was proclaiming it the “fastest growing infectious disease in the US” back in 2013, they were saying, “it’s hard to catch and easy to treat”. Well, I guess if a patient presents with the classic bulls-eye and symptoms that meet surveillance criteria early on, that diagnosing and treating would be easy. But what of those who don’t present with a bulls-eye? Less than 50% who are positive have the classic rash. What if the patient presents with other symptoms because they were exposed to a different tick-borne disease? What if they were exposed to more than one disease? What if they go to a provider who is not well versed on the complexities of symptoms that multiple tick-borne diseases can present with and they order the wrong test? Or worse, they misdiagnosis thus mistreat.

The Hippocratic Oath that most patients think all doctors adhere to requires the provider to do no harm, to respect scientific gains and to share knowledge with those they work with ~ all for the betterment of their patient. The patient always comes first. There is no place in chronic illness for medical pride. The best statement I ever heard from a doctor who was treating me was “I don’t know but I will find out.” I had the utmost respect for that provider for all pride was put aside and they were willing to do whatever it took to figure out what the next step was.

On our website www.mldse.org there is a PHYSICIAN TRAINING tab. On that tab are links for providers to access free up-to-date education about Lyme and tick-borne disease in the comfort of their own homes and offices. There is information available for continuing education opportunities with other medical providers who are extremely knowledgeable and experienced in dealing not only with acute but chronically ill patients. As I mentioned last week, the absolute best thing for the patient is to see a provider who not only has current knowledge but also connections to other providers for consulting on difficult cases. But what if we could come together, primary care and Lyme literate physicians, and work together to diagnosis and treat patients exposed to tick-borne diseases? What if primary care doctors started referring their patients to these providers for continuing care until they were better? What if I told you that in some of the state of Maine, they already are!

On that note, I will leave you with the best line from that song because everyone deserves the absolute best care ~ every boy, girl, woman and man.

“Oh well now, make someone happy, make someone smile,
Let's all work together and make life worthwhile
Let's work together, come on, come on Let's work together, now now people
Because together we will we stand, every boy, girl, woman and a man”

Paula is the president of the MLDSE, the Maine-partner of the national Lyme Disease Association, a member of Maine’s CDC Vector-borne Workgroup and active in Maine’s Lyme legislation. You can reach her at paula@mldse.org