Why Lyme Disease Awareness Is Important
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.
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.
- Prevention is key!
- 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!
- Know the signs and symptoms of Lyme.
- 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!
- Lyme Disease testing: https://www.lymedisease.org/lyme-disease-test/ [3]
- Be Tick Aware: https://www.globallymealliance.org/about-lyme/prevention/
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
Terry Mayfield
Over here reflecting about life, illness + healing. Offering encouragement + empathy + support. Sharing smatterings of sarcasm + sass. Oozing with opinion. Speaking my truth. —tmm
37 Comments
dawn
thank you terry for advocating so strongly – we need to learn and become more aware and educated so we can in turn advocate and help create change as well.. you are such a warrior dear sister .. thank you for sharing your journey and your soul with us as well.. xxooo
Terry Mayfield, The Blathering Lymie
I Love you warrior sister! xoxo 🙂
Susan
Love you so much and hate that you and others have to fight this !!! Prayers are always for you and more medical quality support!!?? Reminder for you: we love your special inspiring warrior spirit!!!
Terry Mayfield, The Blathering Lymie
Thank you Susan! Your support and love is always felt and truly appreciated, more than you know! xoxo 🙂
patricia cove
I do no know how to contact you. I can not seem to log onto wordpress?? Pass words!!! I have tremendous compassion for you. I have friends who have this. One is now a senior and handicapped. Did you see this, I just saw it last week. If you want more info, just msg me on FB Patricia Cove (older than younger lol) or email me, as I now see that below. http://bit.ly/20QPXuP
Terry Mayfield, The Blathering Lymie
Hello Patricia,
Thank you for taking the time to visit my blog site, and for your kind words. You can message me through FB if you like – http://FaceBook.com/ColorMeLyme – You could also email me, but I’m not very prompt with checking my emails. terrymmayfield@aol.com
Terry 🙂
Terry Mayfield, The Blathering Lymie
Thank you Patricia for taking the time to stop by my blog site! Sending healing wishes for your friends battling Lyme. Such a challenging journey to find wellness. ???
Betty
Excellent ‘blathering’ Terry! It’s refreshing to read a Lyme disease article that is lyme factual from A-Z. Too many Lyme news articles still copy/paste old Lyme prevention tips that do more harm than good, and I’ve noticed many lyme advocate groups posting those articles using the old-outdated and shameful CDC and IDSA guidelines and prevention tips.
We as Lyme disease advocates must STOP posting newsy articles that contain false data that only points to east and Midwest as Lyme and tick hotspots, and that contain IDSA guidelines for diagnosing and treating Lyme & the outdated and potentially harmful Lyme and tick protection information.
The whole 24-36 hour tick attachment (IDSA) recommendation, scares me a whole lot! It is a very dangerous and false statement that can and does cause a false sense of security. They believe that they or their loved one is safe after being bitten because the tick attachment was under that timeframe. I know of some who were bitten just a couple hours and contracted Lyme. The tick that bit me was easily estimated to attached around 7 hours.
Thank you Terry! I will be posting as a feature on Lyme Expressions and Fellowship where I will continue to refuse to post any articles that contain Lyme disease information that can harm the public. I am committed to protect and speak the truth -and of course share Lyme patient stories. I always say, “The REALITY is in our stories” because I have come to understand the power of spreading Lyme awareness through the patients experience.
Thank you for sharing your story on LEAF Terry. If anyone would like to read Terry’s story on Lyme Expressions and Fellowship, please visit our page and scroll to patient story #75 posted in Feb 1, 2016.
Terry Mayfield ? The Blathering Lymie
Thank you, Betty, for your thoughtful comment! I truly appreciate all you do to spread awareness about Lyme disease, and by sharing patient’s stories. You helped me find my voice! I am so grateful to have been able to share my story on LEAF. Blessings to you!???
-Terry
Betty Neal
Featuring your blog post tomorrow, Sunday April 22, 2017, on Lyme Expressions And Fellowship -LEAF. Most excellent article to kick off Lyme Awareness Month 2017!
Betty Neal
I meant April 23rd 🙂
Terry Mayfield ? The Blathering Lymie
This is great! Thank you!?
Claire Saul (PainPalsBlog)
Shared on PainPalsBlog Monday Magic Inspiring Blogs for You!
Terry Mayfield ? The Blathering Lymie
Thank you, Claire! I truly appreciate the share.?? -Terry
chronicmom
This is a great summery of all the problems that come with Lyme. I’m going to share this from now on when I get questions!
Terry Mayfield ? The Blathering Lymie
I’m so glad you found this post helpful! Such a complicated disease we fight! Blessings to you.?? -Terry
Ali Hemsley
I can’t believe these stats – great post! xx
Terry Mayfield ? The Blathering Lymie
Thank you, Ali. These statistics are mind blowing, and this insidious disease is truly maddening! Wishing you wellness.? -Terry
Deb Preuss
Thank you for your voice in this terrible disease. We must educate EVERYONE!
Terry Mayfield ? The Blathering Lymie
Thank you, Deb, for taking the time to read this Awareness post, and for your comment. You are so right, EVERYONE needs to be made aware of the debilitating affects of this disease. LYME IS EVERYWHERE, and no one is immune! Please take care.?
-Terry
Sue Jackson
Wow, what an excellent and much-needed post, Terry! You’ve hit on all of the important points here. Like you, I’ve had many, many negative Lyme tests and yet have had Lyme disease since 2008! I’m one of those people who just don’t make the antibodies (lucky me).
My son has battled Lyme, babesia, and bartonella since 2007, and these infections have turned his life upside down. Poor guy is only 26 but has spent 16 years of his life (he got ME/CFS at age 10, first) fighting so hard for everything.
I wish this information were more widely understood … especially in the medical community!! Thanks for helping to spread the word.
Sue
Live with ME/CFS
Terry Mayfield
Thank you, Sue, for your kindness and support. Heartbreaking that you and your son know the struggles of these diseases. Wishing you both improved health and stronger days ahead. Thank you for sharing your story and knowledge gained with all of us.
Blessings!
—Terry xx
Molly | Transatlantic Notes
This was so informative; thank you so much for raising awareness! I think it is ridiculous that testing is known to not be as accurate as it’s needed but so much is put on the results. If it often shows a false-negative then the more sensitive/better test should be done right away (frankly). I really appreciate this post!
Terry Mayfield
Thank you for taking the time to read this post! Truly grateful for you kind words and encouragement, and for sharing your thoughts on testing. Beyond unfortunate how this disease is caught up in bureaucratic madness. Wishing you wellness.💚🦋💚
Terry Mayfield
Thank you for taking the time to read and comment on the post! Appreciate your kindness and support.
Kristina
Lots of doctors truly haven’t chosen the right field! Unbelieveable how many of them just- doesn’t care about the patient’s symptoms. In Canada, a good lot of them won’t even test for lyme because « we don’t have that here » 🥲 not taken in account how much the tick population have increased through the years, coming to us from the US.
I found ONE tick on my dog before, 7years ago, something that we never even saw before with mother’s 11years of owning dogs.. both are vaccinated for it, and treated so hopefully none get on them again. Since then my poor mother is so afraid of ticks, she won’t even go in the woods anymore 😅
Thank you for sharing you experience xx
Terry Mayfield
Thank you, Kristina, for taking the time to read this post, and for sharing your personal experience with ticks and knowledge of Lyme in Canada. Do hope your mother will allow herself to enjoy the beautify of nature… but understand the fear of ticks and these diseases. Prevention, tick checks and early treatment — are all key. Wishing you, your mother and pups well.💚🦋💚
Emma T
We’re in the UK on a farm, and I’m always checking my son who gets bitten a lot (and my OH’s the same), because he insists on wearing shorts when out in the fields. My brother was tested years ago in case all his symptoms were down to lymes – but here there’s no second test (unless things have changed since then). He was debating even travelling to the US to get it done. In the end he was diagnosed with chronic fatigue syndrome. There’s not so much of it around, but is one they suggest people watch out for when out with dogs in particular.
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