The Misconceptions of Lyme Disease are Rampant, Leaving Patients Searching for Answers
Ten Facts About Lyme Disease Everyone Should Know
For more than two decades, the cause of the chronic illness that plagued me was unknown. During that time, I was misdiagnosed and treated for diseases I did not have.
While I never gave up searching for answers, my resolve waned.
Then, in 2016, my healthy eleven-year-old began experiencing frightening neurological symptoms virtually overnight. Seizures, vision issues, and difficulty walking led us to three states searching for answers.
Knowing what it was like to suffer from an unknown illness, I vowed to find answers and help for my son.
It took eighteen months and dozens of specialists before he was diagnosed with Lyme and multiple tick-borne infections.
He lost his teenage years to a disease that remains overlooked, misunderstood, and misreported.
Lyme is an epidemic that no one wants to talk about.
The beginning
After local doctors and specialists told me my son was suffering from anxiety, depression, or ‘just didn’t want to go to school,’ I was determined to understand why Lyme was being ignored.
As the daughter of a physician, I couldn’t comprehend the dismissiveness and arrogance we encountered for years. I was on a mission:
to help my son recover from a disabling disease and regain a normal way of life.
to understand why Lyme patients were being dismissed and marginalized.
To determine why Lyme disease remained so difficult to diagnose and treat.
In the process, I uncovered what most patients never learn about Lyme, and I solved another long-standing mystery - the cause of my chronic illness.
In 2018, two years after my son was diagnosed and twenty-five years after I first became ill, I, too, was diagnosed with multiple tick-borne infections.
In a cruel twist of fate, my son’s illness led to the answers I had been searching for.
Multiple bacterial infections (Lyme, Babesia, and Bartonella) had been undiagnosed and untreated for decades, leading to a chronic illness and a progressive autoimmune condition.
Had my son or I been properly and promptly diagnosed and treated for Lyme at the time we became ill, we would have avoided years of severe illness and disabling symptoms. The cost of finding answers has been exorbitant, and my faith in the medical system has forever changed.
Like millions of Lyme patients, we lost years of our lives.
The road back
After my son was diagnosed, I began extensive research on Lyme and vector-borne diseases.
I needed a resource guide, but none existed.
I needed the facts, not the myths.
I needed providers who understood the complexity of the disease and how to treat it.
I needed support from a community that understood the challenges.
I compiled my research into a resource guide for other patients and their families. I make it available for free and update it regularly as new research becomes available.
While we have made significant improvements after years of extensive treatment, there is no cure for chronic Lyme disease.
Suffering in silence
For most patients, outdated information leaves them suffering. Families and friends question them, and providers dismiss them. Many are told their problem is psychological.
They give up looking for answers.
Their condition progresses and worsens.
They remain isolated.
They lose hope.
The CDC and the Infectious Disease Society of America led the way in perpetrating misinformation about the seriousness of vector-borne diseases such as Lyme. Despite small steps to correct the widespread fallacies, the damage has been done.
The public remains uninformed, and the misconceptions are far-reaching.
Most physicians never consider Lyme when a patient presents with a host of complex symptoms. In the rare cases in which Lyme is considered, or a patient presents with a classic bulls-eye rash ( approximately 30% of cases), testing and treatment remain flawed.
Private foundations are leading the way.
In the past decade, research conducted by private-sector foundations has yielded a wealth of new information, and patient advocates have joined forces to lobby Congress for much-needed research funding. Although it is the leading vector-borne disease in the U.S., with more than 500,000 known new cases each year, Lyme remains woefully underfunded.
Non-profit foundations are working to change the landscape for patients.
Disseminating the new information to the public remains challenging due to the ongoing politics of Lyme, which dates back more than forty years. My guide lists a wealth of resources to help you understand more. If you take the time to read or watch one of the films mentioned, I guarantee you will be shocked by what you learn.
While information availability is better, most news stories still contain inaccurate, outdated information, leaving patients wondering where to turn next.
Organizations such as Lymedisease.org, the Global Lyme Alliance, Project Lyme, the Bay Area Lyme Foundation, the Center of Lyme Action, the LivLyme Foundation, and the Alex Hudson Lyme Foundation have been instrumental in offering support, spearheading research and mobilizing the Lyme community.
Many have dedicated millions of dollars to fund private research.
Each year, during the Lyme Fly-in, I join other patient advocates and meet with members of Congress and their aides to discuss the needs of the Lyme community.
A few weeks ago, a group of advocates led by the creators of the award-winning documentary The Quiet Epidemic and Global Lyme Alliance ambassador and actor Chris Meloni met with members of Congress to deliver a clear and urgent message:
The currently available Lyme diagnostic is highly inaccurate.
We lack a cure for all stages of illness.
Ticks carry far more than Lyme disease.
The general public is largely unaware of the reality of Lyme disease until they or someone they love becomes sick.
When you know better, you do better.
After spending years educating myself about vector-borne diseases, I vowed to raise awareness and educate others on the perils of Lyme disease. I felt called to write and speak about what I learned so others could avoid the pain and suffering we endured.
If you’ve been a regular reader of The Power of Change, you’ve read my articles about the patients who lost their battle with Lyme disease, some I knew personally, others I knew through the community.
Don’t be mistaken.
Lyme can be deadly if not treated promptly and adequately.
Lyme can become chronic and cause other chronic disabling diseases.
Lyme is not something to take lightly.
I was fortunate to find the best clinical care for my son, but many families don’t know where to begin or cannot afford the out-of-pocket costs of treating Lyme.
The fight for a cure continues, and I pray it happens in my lifetime. In the meantime, I’ll continue to do my small part to raise awareness and ensure others know the facts.
Below is an excerpt from an article I wrote that was first published on Medium last year. If you stop reading here, please consider watching the award-winning documentary The Quiet Epidemic and share this post so more people can become aware of the risks of Lyme Disease.🙏🏻
Ten Facts About Lyme Disease Everyone Should Know
1. Lyme disease is a bacterial infection reported in every state and found on every continent except Antarctica.
Lyme disease is an infection caused by several strains of Borrelia burgdorferi (Bb). The bacteria is transmitted to humans through the bite of an infected tick. Ticks can transmit other bacterial, viral, and parasitic diseases and infect pets and livestock.
2. Lyme disease is the most common vector-borne disease in the United States.
According to the National Institute of Health (NIH), vectors like mosquitoes, ticks, and fleas carry infective pathogens like viruses, bacteria, protozoa, and other parasitic infections. The most common way vectors transfer pathogens is through a bite.
3. Patients with Lyme disease are frequently misdiagnosed
Misdiagnosis delays the correct diagnosis and treatment, allowing the underlying infection to progress unchecked.
4. Lyme disease can be transmitted by an infected tick quickly
Transmission of Lyme and other infections can take place in a matter of minutes, particularly if the tick is not removed correctly. Scientists from the Institut Pasteur studied the transmission of bacteria by ticks.
Animal studies indicate transmission can occur in less than a day. Yet, the CDC website leads patients to believe that a tick must be attached for 36 to 48 hours or more before the Lyme disease bacterium can be transmitted.
Please know you are at risk if a tick is attached for any length of time.
5. You don’t feel a tick bite, and you may never see the tick
You won’t feel a tick bite. The tick anesthetizes the skin as it bites you. It can attach, feed, and detach without you knowing. Some ticks are so tiny you’d never realize they’re attached.
6. Lyme disease is known as the “great imitator”
Lyme disease can be mistaken for ALS, MS, Chronic Fatigue Syndrome, Fibromyalgia, Alzheimer’s, Parkinson’s, autism, and other illnesses. It’s called the Great Imitator.
7. Lyme disease can be transmitted from mother to fetus in utero
If you are pregnant and suspect you have Lyme, please find a Lyme-literate physician and get treatment. Sue Faber, a Registered Nurse (BScN) and Co-founder and President of LymeHope, a not-for-profit organization in Canada, has been on the cutting edge of this topic for years. Last year, she presented her research at the LivLyme Foundation Summit (Perinatal Transmission of Lyme Disease: A Path Forward).
8. Lyme disease is a clinical diagnosis, and standard Lyme tests miss more than 50% of all Lyme cases
According to the CDC, Lyme disease is diagnosed based on:
symptoms
physical findings (e.g., rash)
and the possibility of exposure to infected ticks
Lyme disease is a clinical diagnosis that should not be made based on laboratory testing.
9. You can have Lyme disease without a bulls-eye rash
Whether you have a bulls-eye is another point that is often misunderstood and misreported.
According to MyLymeData, only 34% of patients with Lyme disease recall a tick bite or any rash.
Yet the CDC reports that as many as 80% may exhibit an E.M. (erythema migrans, E.M. rash). They don’t mention how this number varies by region and study.
A 2010 study showed that only 43% of Lyme patients in Maine exhibited an erythema migrans.
In 2019, the California Department of Public Health Annual Report cited only 33% exhibited the E.M.
In a study by Dr John Aucott from John Hopkins, only 20% had the bulls-eye presentation.
If you have a rash, document it by taking a picture next to a ruler. You can also draw a ring around the contours to see if it expands over time.
More importantly, know you do not need to have a bulls-eye rash to have Lyme disease.
10. Lyme persists, and there are two vastly different ways to treat it
Most patients do not know there are TWO standards of care for treating Lyme disease.
However, as of March 2016, The IDSA Guidelines have been removed from the NGC for being out of compliance and are undergoing review.
The two guidelines are vastly different and reflect the disagreements between these two organizations on several points related to Lyme disease, including whether the Borrelia bacteria can persist following treatment with antibiotics, the complexity of the disease, and the best approaches to diagnosing and treating it.
Lyme persists
In addition, definitive evidence of the persistence of the bacteria after antibiotic treatment was reported in 2021 and published in Frontiers in Neurology. Monica Embers, associate professor of microbiology and immunology at Tulane University, and a team of researchers found the existence of spirochetes in the brain tissue of a woman who had long suffered neurocognitive impairment after her diagnosis and treatment for Lyme disease. Embers noted:
These findings underscore how persistent these spirochetes can be despite multiple rounds of antibiotics targeting them.
Most patients also may not know that according to the American Medical Association, when there are multiple Standards of Care for a condition or disease, the physician has an ethical obligation to present ALL options and work with the patient to determine which option is preferred.
This DOES NOT happen in Lyme disease.
What you need to know:
What’s really at stake when it comes to Lyme disease?
You should understand the issues, challenges, and treatment options available.
If you are not told about both sets of treatment guidelines, you must advocate for your options and, if needed, look beyond your traditional provider.
Whether you live in the country or the city — the risks of Lyme disease exist as soon as you step outside.
Prevention is a key to avoiding Lyme disease.
Thank you for being a part of The Power of Change, and welcome to the new subscribers who joined this past week. I’m so grateful for your support and thrilled you’re here.
If you enjoyed this post, please click the ❤️ at the end so more people can discover it on Substack. If it resonates with you, drop me a note and let me know how.
This week in particular, I ask you to please share this so more people can be better educated about the risks of Lyme Disease. 🙏🏻
Until next week, be mindful and stay safe.
This article provides a wealth of information that truly shows a great deal of real life knowledge that you have and will be an excellent guide for people who are just beginning to look for answers!
Thank you for your time, gathering all of this important information that can be shared! I will be passing it along to many. Bless you friend for all you do. ♡