“A lie is a lie even if everyone believes it. The truth is the truth even if nobody believes it.” –David Stevens

So many Lyme and tick-borne disease patients find themselves caught in the middle of a medical controversy, so deeply rooted in historical beliefs and enmeshed in modern science. It’s no wonder that the patients are confused when even the doctors themselves do not fully understand the complexity of diagnosing and treating tick-borne disease. Symptoms can and will present very differently from patient to patient and it is not practical to assume that we all fit in the same box.

My truth? I was bit by a deer tick while outside doing fall clean up

My truth? The tick was on me for less than 12 hours

My truth? I initially presented with “anxiety, panic attacks and respiratory issues”

My truth? My medical providers initially thought I had fibromyalgia, chronic fatigue, stress, hormonal-issues. I was even asked how my marriage was and if I feared my spouse.

My truth? Every visit to my primary care provider’s office resulted in another diagnosis, with more prescriptions to be filled.

My truth? The pain was agonizing, and it moved all throughout my body until it hijacked my central nervous system and settled into my spine.

My truth? When I called the doctor’s office, crying to be seen because the pain was unbearable, I was labeled a “drug seeker”

My truth? My neurological symptoms were so debilitating that some days I only made from the bedroom to the living room (with assistance).

My truth? I couldn’t remember the names of friends and family that came to visit me.

My truth? I got lost driving in the town that I grew up in. Nothing looked familiar.

My truth? Eating became such a challenge that all my food was cut up for me and I drank through a straw from a plastic cup with a lid.

My truth? I was misdiagnosed by 23 doctors and specialists who 1) didn’t realize how sick someone could get from a tick bit and 2) consulted with outdated guidelines and protocols even though new science was readily available.

My truth? Almost 2.5 years post tick-bite, I tested positive for late stage neurological Lyme, Babesia, Bartonella, RMSF and Erlichiosis….and yet I had had 4 negative Lyme tests.

Just because someone doesn’t believe in something doesn’t mean it doesn’t exist. It means that there is an opportunity for more education to be had. It means that you just might have to speak up a little louder for yourself. It means you might have to find a provider who understands tick-borne diseases and who has the resources to properly test for, diagnose and treat, knowing that not all patients are the same.

The controversy surrounding testing derived from the 1994 Dearborn, MI meeting when a group of scientists and researchers came together and even amongst conflicting evidence (which was ignored), changed the serological definition of Lyme Disease. It went hand in hand with the timing of the Lymerix vaccine that was in the works and on the verge of being released. In a nutshell, the reasoning behind changing the definition was based on the conclusion (of some) that those who got the vaccine would always test positive. They wanted to make it easier to decipher between those who had an active infection and those who had a negative reaction from the vaccine.

However, amid all the knowledge, experience and scientific research done, the vaccine that came out in 1998 was quickly pulled off the market in 2002 but not before distributing 1.5 million doses.

So, this group comes together, decides to change the serological definition of Lyme disease, gives the go ahead for the vaccine to be released and then quickly pulls it off the market due to adverse reactions and provides no further follow up. Of course, there is way more to the story.

Truth: In the June 15, 2007/Vol. 56/No. 23 edition of the Morbidity and Mortality Weekly Report (MMWR), it was summarized that between 2003 and 2005, the federal Centers for Disease Control and Prevention (CDC) received data on 64,382 new cases, of which 59,770 cases stemmed from 10 endemic states (CT, DE, MD, MA, MN, NJ, NY, PA, RI and WI). It was made clear that the data was for surveillance purposes only and not intended for clinical diagnosis. The data collected included: gender (male/female), age group, symptomology and illness history details.

Truth: In a 2007 email to a colleague at the federal CDC, Phillip Baker, [then] head of research funding for Lyme disease at the National Institute of Health (NIH), wrote: “I will certainly miss all of you people – the scientists, but not the Lyme loonies.” Culled from 3,000 pages of documents obtained under the Freedom of Information Act and provided to the Poughkeepsie Journal, where journalist Mary Beth Pfeiffer did what she does best ~ calling people out on their words and actions! (Read more about this at www.google.com/amp/s/amp.poughkeepsiejournal.com/amp/6907209)

Truth: In an (archived) Press Release dated Aug 19, 2013, the federal CDC released in a statement that “each year, more than 30,000 cases of Lyme disease are reported to the CDC, making it the most commonly reported tick-borne disease illness in the United States. A new estimate suggests that the total number of people diagnosed is roughly 10 times higher than the yearly reported number. This “new estimate” supports studies published in the 1990s indicating that the true number of cases is between 3- and 12-fold higher than the number of reported cases.”

Truth: In July 2018, the Agency for Healthcare Research and Quality (AHRQ), a partner of the Department of Health and Human Services, announced that they were shutting down their National Guidelines Clearinghouse (NGC) database. The NGC was a database of clinical guidelines for a variety of diseases, whose purpose was to inform physicians on the best way to treat various medical conditions. In October 2016, they added the recommended guidelines provided by International Lyme and Associated Disease Society (ILADS) and in Feb 2018, they removed outdated guidelines from the Infectious Disease Society of America (IDSA) after several notification attempts to get their information updated. This gave Lyme patients everywhere a glimmer of hope that finally all providers would be on the same page…until April 2018 when the AHRQ website posted the following: “The AHRQ National Guideline Clearinghouse (NGC) website will not be available after July 16, 2018 because federal funding through AHRQ will no longer by available to support NGC as of that date.” They went on to state that although there was interest received from stakeholders to continue carrying on this work, AHRQ had not determined whether, or to what extent, the Agency would have in it going forward.

Interesting timing…If you can’t beat them, pull the plug! Call the patients “Lyme loonies” and discredit them and the providers who treat them. And why?

There are seriously not enough pages to this newspaper for me to fill you in on all the injustices that patients have faced. I wish I could tell you that it is getting better and on some levels it is. However, mockery from medical providers, sworn to do not harm, but instead, who inflict just that ~ physical, mental and emotional anguish ~ continue even into 2020, all because they do not fully understand the complexity of Lyme and tick-borne disease, they do not understand that you can not follow acute guidelines for a chronically ill patient with late-stage symptoms and expect results. They do not understand just how sick patient can get not only from a tick bite but one that goes undiagnosed or misdiagnosed. Now that infections spreads system wide and to major organs, causing what I refer to as “secondary causative infection”, now you have neurological or cardiac issues and are sent off to a specialist who is not experienced at connecting the dots back to the tick bite.

Truth: In 2013, 17-year-old Joseph Elone, of Poughkeepsie, New York collapsed at his home and died hours later after a month of cold-like symptoms. After months of autopsies, medical examiners found traces of Lyme bacteria in his heart tissue and ruled Lyme carditis as the cause of death. He grew up in tick county and had pulled countless ticks off of himself over the years and yet when he presented with low-grade fever, achiness, Gi upset, cough and sore throat, he was told to go home, drink water and rest. His symptoms only got worse. More tests were run but Joseph’s condition worsened and the day his mom took him to the pharmacy to get cough drops for his cough, he collapsed as they walked back to the house and died a few hours later.

Not every patient presents the same and yet, their truth is their truth even when it differs from my truth. Even outdated guidelines and protocols held some truth at one time, but no more. Enough is enough and as long as the number of new cases continue to grow, we need to continue to speak our truths, just speak louder for those in the back row~ because all patients deserve to be treated with respect.