Once a year, I like to share a Maine CDC Vector-borne Workgroup Surveillance report update. This information can be found year-round on their website, but I prefer to compile it into a manner that makes it easier to read and understand. I also prefer to do it in the Fall for a couple of reasons. One, to highlight where the levels of tick-borne disease are by disease and by county but also to remind my readers that ticks are still active, and that prevention are still needed to avoid having a tick encounter. Fall is ripe for tick activity because the weather is cool and damp. Every year, in the fall, we see a spike in new cases of tick-borne disease. As we slowly transition from one season to another, the foliage beckons us outdoors, drawing our attention to the beauty of the changing colors, and as we layer up, it becomes more difficult to think about ticks let alone find them crawling on us and as the weeks go on, we tend to forget about the danger that lingers around us

Something else takes place in the fall. Phone calls and emails from people who were bitten during the spring and summer months increase as they reach out for help because they are still symptomatic. In conversation, it is often revealed that they were undertreated and after a period of time, their symptoms flared back up. Some were never checked for co-infections and so again, after a period of time, when the antibiotic regimen ended, there was an untreated infection that was left to disseminate. The time frame varies patient to patient depending on strong their immune system but believe me when I tell you this, contrary to what some say “tick-borne disease infections do not just go away by themselves” and Yes, this came out of the mouth of a Maine medical provider (insert angry emoticon here).

This next part, I am resharing due to the severity of its importance:

I’m a huge proponent that you need to see the right person for the right job. In order to get correct service or information, you need to seek out someone who has knowledge and experience with the subject matter at hand. Like Lyme and Tick-borne disease. If you seek out a medical provider who does not have a lot of experience, you will not get the best medical attention, proper diagnosis or treatment. You might get lucky and get a positive blood test immediately but if not, if your test comes back negative and your medical provider does not encourage you to come back in 2-3 weeks for additional blood work, it is very probable that you, like so many others, will fall between the crack of a broken system.

And here is why.

The federal Centers for Disease Control (CDC) Chief of Epidemiology and Surveillance for CDC’s Lyme Disease program, Paul Mead, MD, MPH, in an August 2013 press release, made the following statement: “We know that routine surveillance only us part of the picture and that the true number of illness is much greater”. At that time, more than 30,000 new cases were reported to the CDC each year, but they go on to further state in that same press release that “new estimates suggest that the total number of people diagnosed with Lyme Disease is roughly ten times higher than the yearly reported number.” Mead goes on to say, “This new preliminary estimate confirms that Lyme Disease is a tremendous public health problem in the US and clearly highlights the urgent need for prevention.”

As a member of Maine’s CDC Vector-borne Workgroup, we meet bi-monthly to report on and discuss, among other things, new cases of vector-borne diseases. The cases are entered into the state database based on the following categories: [C] Confirmed, [N] Not a case, [P] Probable and [S] Suspect. Whenever an article is written to release publicly the number of new cases, only confirmed cases are counted. Well, I ask, “what is being done about the probable or suspect cases?” because again, who you see matters.

Here is the 2019 data (year to date as of 9/18/2019) entered into the State of Maine’s database, with regards to reportable vector-borne diseases. I draw your attention to the Probable and Suspect columns as these numbers at some point either become confirmed or remain misdiagnosed.

YTD 9/18/2019

So, what do we know about Lyme and Tick-borne diseases?

We know that the blood tests used by most primary care physicians are not as reliable as we would like it. In fact, the state of Maine has a law, LD597 An Act to Inform Persons of the Options for the Treatment of Lyme Disease, which doctors are supposed to inform their patients on the difficulty in diagnosing and treating Lyme Disease — and yet this is not happening.

We know that not every patient is going to produce right away the antibodies needed to be detected on said blood test.

We know that most primary care physicians follow outdated Infectious Disease Society of American (IDSA) guidelines and protocols used for diagnosing and treating. Currently, there are eighty-seven organizations in eleven countries around the world that are challenging the current IDSA protocols as being outdated and harmful to patients. And that number continues to grow every week.

We also know that those outdated guidelines clearly stated that adherence to guidelines was a suggestion only and not intended to replace physician knowledge and that each individual case is to be determined between the doctor and the patient.

We know that there are variances among patients with symptoms and that, in most cases, co-infections are not ruled in or out and that delayed diagnosis can complicate and warrant longer treatment.

We also know that re-testing, at the end of antibiotic treatment, is not a reliable method for determining eradication of infection. With most antibiotic treatments, immediate testing will always be negative because the current antibody test being used is looking for something that your immune system has suppressed while taking the treatment and it can take days and weeks for it to become detectable again, hence ongoing symptoms.

With unreliable blood work being done in our primary care doctor’s office, by providers with limited knowledge and experience with tick-borne diseases, I can’t help but wonder what is happening to all those Probable and Suspect cases out there walking around in our community? People thinking that because they tested negative that they are free and clear of the dangers lurking with an undiagnosed infectious disease. People sick without answers or worse yet, misdiagnosed and mistreated. My tick encounter was in the fall and I had four negative tests, dozens of misdiagnoses and treatments that failed and went two years two months before getting a proper diagnosis (to the tune of $250,000). It took me that long to figure out that I was truly sick and needed to advocate for myself. I was not referred to any Lyme specialists because my doctors (using unreliable tests and referring to outdated guidelines) told me that was not what I had. In truth, my body was fighting off late stage neurological Lyme complicated by Babesia, Bartonella, RMSF and Erlichiosis while I listened to specialist after specialist tell me that there was nothing wrong with me. I might have been probable or suspect but the one thing I knew for certain: I was very, very sick and I needed help!

If you or someone that you know is sick and tested negative, please contact me. I can get you connected to free resources to get a proper diagnosis and get you on the right journey back towards health and wellness.

Paula is the president of the MLDSE, the former 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