Blog post,  Lyme Disease

Why Lyme Disease Awareness Is Important

May 14, 2016
Updated — May 6, 2022

It is rare these days to find someone who doesn’t know of someone with Lyme disease. For the “fortunate“ someones — diagnosed and treated early (in the acute stage) — they will hopefully be blessed with a complete recovery; as if this touch with Borrelia burgdorferi was an easy walk in the park — like taking a stroll in the very park in which an infected tick (mosquito, fly, perhaps flea) may have bitten them.

Sadly, this ‘easy stroll in the park’ scenario is not the case for many patients inflicted with B. burgdorfer — and/or a host of co-infections. Many never recall a tick bite and may go undiagnosed (often misdiagnosed) for years, even decades (as in my case). Educating the public about these diseases is important — with emphasis toward prevention, early detection, the need for appropriate treatment… and general information the public may be unaware of.

The purpose (and hope) of this post is to help shed light on Lyme and vector-borne diseases.

Lyme Disease — Patient Perspective + Reality

Think for a moment of your child, spouse, partner, a close family friend. What if they were battling an illness that left them bedridden, suffering and in pain — day in and day out — with little to no reprieve? What if this happened to you?

Now consider the following: lying in a hospital bed, shaking and trembling from a neurological seizure, writhing in deep bone and muscle pain, chest pain and pressure combined with difficulty breathing and air hunger (feeling as though you are unable to take in enough air; talking is an exhausting task), unexplained fevers and chills… then rushes of hot flashes and sweats, dizziness and vertigo that comes in waves, brain fog and confusion, severe headaches and migraines, extreme nausea, blurry vision, panic attacks, relentless and debilitating fatigue… to name only some of the more common symptoms experienced by many Lyme disease patients. Symptoms I personally know, all too well.

And the occurrences described above, happening (nationally and worldwide) with medical professionals unable to narrow down a specific diagnosis, as all tests appear “normal.” In all likelihood, a negative* (false-negative?) Lyme test will be included in the mix of laboratory testing. You might even inquire specifically about Lyme disease yourself, because by this point in time along the quest to find wellness, you have searched every possible disease known to man on the google-machine. Perhaps you have even been told not to worry, “you don’t have Lyme” (you silly, misguided soul) — because your test results were negative. Or better yet, the infamous: “there is no Lyme disease in this area.”

But that’s okay (she writes sarcastically), if you are “lucky,” maybe your physician will appease you and prescribe a single dose, 10-21 days of doxycycline, amoxicillin, or cefuroximel — per the Centers for Disease Control and Prevention (CDC) guidelines. And being the “observant” clinician, offering an unsolicited prescription for antidepressants, to treat your obvious ”depression.” Followed by a strong sense of, ‘don’t let the door hit you on the way out!’

Side note: Chronically ill patients are depressed. Because we are sick! And miserable. And overwhelmed. Unfortunately, there are some in the medical world who seem to lack the necessary empathy/ interest/ patience (possibly too arrogant?!) to work with “difficult to treat” patients — or simply can’t be bothered to dig deep enough for the root cause(s) of symptoms. Instead, quick-to-judge diagnoses are given, along with medications that at best mask symptoms, at worst allow underlying conditions to progress.

To all physicians who have overlooked and/or dismissed challenging + complex symptoms — on behalf of every patient who has been dismissed or left to think very real invisible symptoms are simply psychological — your patronizing “compassion” is/was not appreciated, and sincerely hope you have chosen to continue educating yourself about vector-borne and complex + chronic diseases. Or perhaps found a new calling, one that doesn’t require a healthy bedside manner. (tiny rant over… moving on!) **

For the masses living with persistent (chronic) Lyme disease, experiences shared above (and much more, too detailed + overwhelming to list) are their/our reality. Add in multiple emergency room visits, hospital stays, specialist referrals, and what feels like endless diagnostic testing, to know avail. Suffering and ultimately left to research on their/our own — searching for specialists who are more than just ‘familiar with’ vector-borne diseases, but are actually able to clinically diagnose and properly treat (any of the 300+ strains of) Borrelia and potential co-infections; desperately hoping to find a clinician who will advocate for complete wellness, offer sincere compassion + concern, leave no stone unturned. Finding a Lyme specialist — that one can afford, due to out-of-pocket consultation fees, medical testing + ongoing treatment expenses — is often half of the uphill battle.

B. burgdorferi Spirochete under microscope (Canva images)

Lyme Disease — Facts and Stats

The Centers for Disease Control and Prevention estimate that 476,000 people are diagnosed with Lyme disease in the US every year.  However, because diagnosing Lyme can be difficult many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher. (LymeDisease.org)

Current indications: up to 54% of patients tested for Lyme disease receive false negative results.

HIV/AIDS is diagnosed with tests that are both highly sensitive and highly specific. They are accurate more than 99% of the time. In Lyme disease, the second test is highly specific. So there are few false positives. Unfortunately, the screening test is highly insensitive and fails to accurately identify patients who have Lyme disease. The two-tiered test system misses roughly 54% of patients. (Stricker Minerva 2010 — lymedisease.org)

Personal experience: Even though my original testing for Lyme disease occurred years ago, suppose we could say I am one of the 54%. Technically, a repeat fifty-four-percenter — receiving multiple (six to be exact) false negative Lyme test results — using the two-tiered test system (ELISA + Western Blot) between 1999-2000. Here is the real kicker. Since all six screening tests (ELISA) were negative, no further testing was done using the Western Blot — the second tier test — which is highly specific (more reliable/ sensitive/ accurate). Not until receiving an off the charts positive Western Blot test in mid-2000 — using a specialty lab based in California (IGeneX), at the behest of an infectious disease physician I was blessed to have been referred to — did we learn my severely debilitating illness was indeed stemming from Lyme disease.

22 years have passed and the same FDA approved, CDC two-tier testing (misleading) system remains in place today.

This fact is beyond disturbing! (and continues to “tick” me off, along with the entire Lyme community!)

Fortunately, and thankfully, there are independent labs[3] that provide highly sensitive and highly specific (aka, more accurate) testing for Lyme and multiple vector-borne diseases (Lyme+). However, insurance does not cover the expense of these (costly) tests, so patients are left on their own to locate such labs/ testing… and then pay out-of-pocket. Complete Madness. Absolute absurdity! (insert much stronger language at will!)

Doing the math: Studies show that up to 30% of Lyme patients suffer with Persistent Lyme Disease (PLD). With 476,000 new Lyme disease cases each year (multiplied by 30%) roughly 142,000 new patients could be facing a lifetime of suffering with debilitating, disabling, often life-threatening symptoms. Annually. Added to the millions worldwide already afflicted with PLD. Multiplied by infinity. Or until a cure magically appears.

Food for thought: If Lyme were a form of cancer or differing type of life-altering illness — not a chronic disease/ persistent infection that remains caught up in bureaucratic bs (read ‘Bitten’ [4] and/or research Plum Island [5]) — is it possible (probable) that reliable testing and proven treatments would rate higher priority, be deemed medically necessary by the NIH, CDC and be approved by the FDA — therefore all Lyme+ related medical expenses would then be covered by insurance and perhaps fewer miserably ill patients would spend a lifetime bedridden and sick?

[bctt tweet=”If current tests were more reliable, Lyme could/should be diagnosed + properly treated within the acute phase — possibly saving patients from a life-time of debilitating symptoms.” username=”TerryMMayfield”]

[bctt tweet=”If all physicians were educated to assess + provide clinical diagnosis of Lyme + vector-borne diseases, fewer cases would advance to debilitating, persistent… incurable stages.” username=”TerryMMayfield”]

“It is estimated there are over 1,200 Lyme and associated diseases suicides in the US per year.” [1]

Dr. Robert C. Bransfield

Clinical Research

The following information is from a Johns Hopkins University School of Medicine clinical study — (with my added comments + interpretations).

Post-treatment Lyme Disease as a Model for Persistent Symptoms in Lyme Disease [2]

Alison W. Rebman and John N. Aucott

  • Lyme Disease Research Center, Division of Rheumatology, Department of Medicine, Johns Hopkins University School of Medicine, Baltimore, MD, United States

“It has long been observed in clinical practice that a subset of patients with Lyme disease report a constellation of symptoms such as fatigue, cognitive difficulties, and musculoskeletal pain, which may last for a significant period of time.” — (‘significant period of time’ = forever! for some long-haulers, it most assuredly seems like an eternity.)

“Evaluation and characterization of persistent symptoms in Lyme disease is complicated by potential independent, repeat exposures to B. burgdorferi, as well as the potential for co-morbid diseases with overlapping symptom profiles.” — (chronic Lyme disease patients are complicated messes of complex complications!)

“There are currently no FDA-approved or commonly agreed-upon treatments for patients who have undergone a recommended course of antibiotics for Lyme disease but who continue to have persistent symptoms. Until the pathophysiology of these persistent symptoms is identified and/or a biomarker is developed, it is likely that treatment recommendations will continue to be without consensus.” — (well, isn’t that just dandy?! patients remain stuck in the middle; left to research for themselves; hope and pray to stumble upon a treatment(s) that provides healing — so, no real proven changes/ improvements, to date.)

“It is likely that the number of new Lyme disease cases will continue to increase in the coming decades, and consequently so will the number of patients with the variety of clinical presentations described in this article as having persistent symptoms. These symptoms are significant for the magnitude of their impact on the broader health care system, as well as on the quality of life of individual affected patients. Although much progress has been made to characterize and understand the most common manifestations of Lyme disease in the almost 50 years since it was first identified, many fundamental questions surrounding persistent symptoms remain unanswered. Beyond the uncertainty and the controversy, real opportunity exists for scientific insight into not just Lyme disease but also the increasing numbers of patients with unexplained symptoms and syndromes for which modern medicine does not currently offer explanation or treatment.” — (Lyme disease cases will continue to rise. More patients will develop persistent/ chronic symptoms. It’s been ‘almost 50yrs’ and this is where are… !!)

Sarcasm aside, immense respect and gratitude goes out to all physicians and scientists and research institutions (from across the nation and the globe) for all potential life-changing work happening behind the scenes.

However, we have such an incredibly long way to go.

Shame on our federal government and three letter heath agencies (CDC, NIH, HHS, FDA) for failing the hundreds of thousands, millions of patients suffering.

How are we 50 years in, and have yet to develop effective treatments?

How have 50 years passed and proper Lyme (NOT LIME OR LYME’S) education is lacking throughout our medical institutions?

How and why are chronic Lyme disease patients still being gaslighted by clinicians, medical professionals and highly regarded hospitals in the year 2022?

In a perfect world there would be no disease. But we all know there is no such perfect existence within this lifetime. Advances in research, treatments and therapies for cancer, HIV/AIDS and countless life-threatening, life-altering diseases have been monumental. For all of our sakes, may these advances continue, prosperously.

I know I am not alone in holding on to hope for improvements in Lyme + vector/tick-borne disease testing, proven effective treatments to be discovered and ultimately… a better quality of life for all patients suffering with debilitating, complex chronic diseases.

Lyme 101 — Knowledge is Power

  • Lyme disease and other vector-borne illnesses can be transmitted not only by ticks, but by mosquitoes, flies, spiders, fleas, and mites.
  • Wear tick repellent along with sunscreen when outdoors. Check yourself, your kiddos, and pets — each time you have been outside. Even in your own backyard, not just when camping or hiking. Neighborhoods, city parks, dog parks, soccer and baseball fields… ticks have no boundaries!
  • Classic bullseye rash presents fewer than 50% of the time.
  • If you or a loved one experiences flu-like symptoms, unusual knee pain and swelling, persistent neck stiffness and/or headaches, chest pain and pressure — especially during the summer months, even if no memory of a bite — please seek medical treatment. Do not delay!

Final Note

Please take a moment to reach out to others who may be suffering with Lyme or any illness or injury. Let them feel your presence. Ask if they need help in any way. Often times, the smallest of gestures mean the most.

To all who are fighting illness and perhaps struggling to get through the day, please know you are being thought of and are surrounded by a community filled with compassion, love and support.

Most assuredly, lovelies, you are not traveling this journey alone.

Thank you for taking the time to read this Lyme Disease Awareness post.

Now get yourself outdoors!

Enjoy every possible moment exploring Mother Earth — as she is indeed glorious.

Simply be smart and stay safe!

Blessings and positive light — always.

** Special Shout Out: To all physicians and healthcare providers who go above and beyond for their patients, Thank You! Your dedication and compassion is appreciated — more than you will ever know.

Sharing is Caring: Repost, tweet, pin and/or email this post (or any image) far and wide — spreading awareness about Lyme and vector-borne diseases is indeed caring… and truly important!

Sources: ILADS.org, lymedisease.org, globallymealliance.org, lymestats.org, projectlyme.org, what is Lyme.com, nih.gov, cdc.gov,

[1]https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5481283/

[2]https://www.frontiersin.org/articles/10.3389/fmed.2020.00057/full

[3]https://www.lymedisease.org/lyme-disease-test/

[4]Bitten, by Kris Newby, https://www.krisnewby.com/

[5]The Deadly Secrets of Plum Island, https://www.counterpunch.org/2013/10/25/the-deadly-secrets-of-plum-island/

Latest Update: May 2022

#LymeDiseaseAwareness #GetItBeforeYouGetIt #LymeIsEveryWhere #PreventionIsKey #KnowledgeIsPower #LymeDisease #ChronicLymeDisease #TickborneDisease #TBD #LateStageLymeDisease #ChronicIllness #PersistentLymeDisease

Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm

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