Lyme Disease Controversy:An Epic Divide Over a Fearsome Bug
By Terry Henry, MBA, CNC, CRM
Ask somebody with chronic Lyme about how upsetting it is to have this double whammy trauma: on one hand the disease can lead to multiple medical disabilities, social stigma, job insecurity, broken relationships, or a shorted-out education.
On the other, there’s a divide in medical and scientific research circles about proper diagnosis and treatment, leaving thousands of Lyme patients stuck in the middle without proper care, a clear recovery plan or fair chance to live a healthy, symptom-free life.
Many sufferers in Lyme Disease support groups I facilitated, and in many more online ones that thankfully have started in recent years, report feeling lost, confused, and in some cases unable to go to work because they’re too sick.
Many are left to navigate a mashup of unreliable test results, misdiagnoses, denial of insurance company claims, and unsympathetic families and friends. Some even report skepticism from health professionals who believe their illness is “psychosomatic” (imagined) despite non-stop symptoms.
Truth is, Lyme disease is very real and it’s destroying many lives. New cases of the sickness have accelerated so quickly that one Statista survey concluded 28% of respondents have known at least someone that was diagnosed with Lyme disease. 1
The Centers for Disease Control and Prevention (CDC) says based on insurance records, that nearly 500,000 people per year are diagnosed and treated annually for Lyme disease in America. 2
Lyme disease also packs a powerful economic and social punch that ranks among the highest in modern American medical history.
David Skidmore, Lyme Loonies
A research piece by the Tick-Borne Disease Working Group 2018 Report to Congress supported by the U.S. Department of Health indicates “…Lyme disease costs approximately $1.3 billion each year in direct medical costs alone in the United States. It is likely orders of magnitude higher and potentially a $50- to $100-billion-dollar problem for the United States, although more research is needed”. 3
The Epic Divide Over A Fearsome Bug
Most experts agree Lyme disease is a black-legged or deer tick-borne illness caused by the Borrelia burgdorferi bacteria. They say mosquitoes, spiders, mites and other bugs can carry the infection, with birds helping to migrate it across the country, while white-footed mice and other rodents are common hosts.
Some experts claim the hidden driver of Lyme disease symptoms may actually be a person’s already weak immune system that allows them to be overrun by the Lyme pathogen (germ). Our immune system is our first line of defense that should protect us against disease-causing bacteria like Lyme- unless it’s too crippled to defend us from attack.
“Some patients do not experience any symptoms after the bite of a tick that carries the bacterial agent of Lyme disease. In these patients, a healthy immune system may be sufficient to eradicate the spirochete. In most other patients, antibiotic treatment is needed to fight the disease that develops”. 4
That’s why the tick bite may be the catalyst that exposes a lurking immune system weakness, causing a person’s run-down immunity to fail, bringing a host of symptoms with it.
Lyme isn’t new on the medical scene either. Back in 1975, the Arthritis Foundation issued the first widespread public notice on Lyme disease after dozens of children and adults living in Lyme, Connecticut reported severe arthritic symptoms.
Then in 1981, Dr. Willy Burgdorfer discovered the spirochete bacteria that caused the illness in those kids, hence its namesake.
As the parasite gains a foothold, Lyme can contain or trigger a complex of co-infections like babesia, Ehrlichia, bartonella, and secondary infections such as mycoplasma (a type of pneumonia), candida and viruses like Epstein Barr and HHV6, and cytomegalovirus.
Widespread infections can engulf multiple body systems, sabotaging bone & joints, the immune and central nervous systems, and even cardiovascular functions.
Patients can present with potentially fatal heart inflammation (Lyme carditis) or palpitations, severe arthritis, viral symptoms, neurological pain, memory loss, dizziness or vertigo, numbness or paralysis.
My misery was a combination of scary dizziness, debilitating knee pain, facial droop (Bell's Palsy) and worse, crushing exhaustion. No matter how many hours of sleep I got, even with taking random naps, it was never enough. And those were just the physical symptoms.
The stress of knowing I was sick, and the frustration of being unable to heal even after closely following standard medical protocols that included antibiotics was depressing. I dreaded climbing out of bed for my commute to work, worried about how I was going to get myself safely into the city for another long day at the office.
Crux of the Controversy
Even after more than 40 years of public knowledge and debate about the disease, it’s still accelerating with no end in sight. There are three major problem areas driving the discord: disease detection & diagnosis, testing and treatment:
1. Detection
You can’t treat what you don’t know you have. A tell-tale sign of Lyme infection is having the itchy “bullseye” rash I had. It may appear after a tick bite. The problem is not everyone gets it, so they’re not always tipped off to seek fast treatment.
The CDC states that the rash occurs in approximately 70% -80% of those infected.
Here’s where the disagreement begins. In sharp contrast, Lymedisease.org., a Lyme disease advocacy and policy group, suggests far fewer infected people reportedly see a rash— ranging from as low as only 27% to 40%—mainly due to tricky recognition, surveillance, reporting & geographic factors. 6
More alarming? A Johns Hopkins study that concluded 54% of Lyme disease patients who present without a rash are misdiagnosed. 7
An untreated infection can give the bacteria time to thrive and literally bore into body tissue (with its “spirochete” corkscrew motion) like its cousin syphilis, to wreck multiple body functions, the brain and central nervous system, heart, joints, and especially the immune system.
The fewer rashes recognized, the higher the chance that like me, there are more infected, undiagnosed folks with untreated symptoms that official estimates undercount.
I had the bulls-eye rash and didn’t know what to make of it, much less that it signaled a serious illness and I needed treatment, so my infection flourished inside my body.
Like others suffering from Lyme, even after I was eventually diagnosed with Lyme disease, the serial antibiotic treatments I got did little to reduce my symptoms. I do believe antibiotics help many people though. Unfortunately, I wasn’t one of them.
We’re all biochemically unique in many ways, so there’s no one remedy that’s likely to work perfectly for everyone’s particular situation.
Who knows, maybe one day there will be a Lyme vaccine that eradicates the disease. I was fortunate enough to keep experimenting on myself until I found natural remedies that rid me of my symptoms.
2. Symptoms, Diagnosis and Testing
Lyme is nicknamed “The Great Imitator.” Unless a health professional is “Lyme-literate” - especially skilled at diagnosing and treating the disease’s many manifestations- it’s often misdiagnosed, especially if a rash isn’t seen.
It can mimic symptoms of more familiar illnesses like the flu, pneumonia, fibromyalgia, chronic fatigue syndrome, multiple sclerosis, ALS (Lou Gehrig's disease), Alzheimer’s, Parkinson’s, lupus, and other autoimmune disorders.
Symptoms can also vary widely and unpredictably from person to person.
Famous author Amy Tan said her symptoms included hallucinations, chronic memory loss and “replacing words with similar-sounding gibberish when speaking.” 8
A writer on Allie Cashel’s Suffering the Silence website describes the severity of her condition: “I became very ill, unable to feed or bathe myself most days. Walking and breathing became my greatest challenges. I dropped down to 98 pounds and was bedridden for 6 months. My spirit was nearly crushed.” 8
In my case, it took me nearly a year to get the right diagnosis. Until then I struggled as the infection grew, making me bone-tired, severely dizzy and barely able to travel to and function at my stressful job on a bond trading floor. I was told I had many things, like mono, chronic strep throat, chronic stress, while various antibiotics had little effect. Meanwhile my symptoms worsened.
One of the most frustrating things Lyme patients say they deal with is having to convince family, friends, colleagues or health professionals that something is actually wrong with them. For example, unlike mumps or herpes that have outward manifestations, folks with Lyme may not have “easily recognizable” ones.
Often a struggling Lyme patient will hear a well-meaning compliment like, “…but you look great!”, but the cruel incongruity between how “well” one may look, and how lousy you actually feel can be deflating. Worse, symptoms can be unpredictable, subside, or re-appear months or years after the initial infection, or phase in and out due to stress or other factors. Once you’re infected, you can feel like you’re constantly looking over your shoulder waiting for a dark cloud of symptoms to return.
“Lyme disease may lead to different symptoms at different times. Symptoms may develop quickly or not until many months or years later as the spirochete can evade the immune response and remain dormant in the human host for long periods”. 10
Let’s turn to the topic of testing for Lyme, another big area of controversy.
In the U.S. medical testing for illness is a key to disease management. “An estimated 70% of all decisions regarding a patient’s diagnosis and treatment, hospital admission and discharge are based on laboratory test results.” 11
Yet many skilled scientists conclude the tests for Lyme are flawed and unreliable. In fact, “in the absence of specific clinical findings, however, Lyme disease testing has a very low positive predictive value”. 12
Two common tests used to diagnose Lyme, the Western blot and ELISA (Enzyme-linked immunosorbent assay), are blood tests that measure antibodies—think of them as biological “smoking guns”, or proteins made by the immune system to fight infection. But these standard Lyme tests produce unreliable results, often failing to identify the infection.
“Because we do not yet have a diagnostic test that is a sensitive marker of active infection, patients and doctors are left with tremendous uncertainty regarding whether or not to treat with additional antibiotics. This uncertainty can lead to conflict — with some doctors advocating treatment and others stating further treatment is not indicated. Such conflict can create anxiety in patients as they become uncertain whom to trust — and it can even cause conflict between doctors who hold different perspectives on this illness”. 13
During the initial or “acute” phase after a bite, before our immune system ramps up to produce enough measurable antibodies (which in some cases could take up to about six weeks), it’s possible for someone to be infected but receive multiple “false negative” test results, despite symptoms, due to a lack of measurable antibodies. I believe this happened to me.
Though many report the Igenex tests are more reliable, some have concerns that no test can possibly measure all the virtually countless strains of either the primary Borrelia burgdorferi infection, or related co-infections or secondary infections, any of which can point to evidence of an infection.
According to Darin Ingels, ND, there at least 5 subspecies of Borrelia burgdorferi and at least 100 other strains of Borrelia in the United States. There are more than 300 strains worldwide. Can this get any more complicated?
In an effort to improve testing reliability, Lyme specialists have “included the use of novel culture techniques, detection of B burgdorferi DNA in urine specimens, and enumeration of CD57-positive lymphocytes (a type of NK – natural killer cell). Critical of these efforts, independent investigations have repudiated the validity of these tests” 15
Disagreement on proper testing protocols feeds the controversy: highly skilled scientists develop sophisticated testing methods, that their counterparts in the very same research area shoot holes in and invalidate.
So, where does the testing controversy leave us? Lyme patients often claim that without standard, reliable tests like those that exist for other well-researched, common ailments like strep throat or influenza for example, their “clinical presentations” of symptoms have been misdiagnosed or dismissed by their health professionals.
Many become discouraged and lose hope for recovery because they are forced to struggle with multiple symptoms without definitive tests, widely-accepted therapies or even medical community consensus around treatment and intervention.
This is the painful crux of Lyme disease patients, and why so many feel like medical stepchildren: disenfranchised and misunderstood. Many even believe they’ve been dismissed and abandoned by the traditional medical community.
Biological tricks of Lyme bacteria
There are several reasons Lyme bacteria is particularly good at both evading lab test detection and spoiling effectiveness of standard antibiotics.
Speed and Mobility: it’s able to scoot out of the bloodstream quickly, burrow and hide in body tissue (heart, lymph nodes, muscle, etc.) before lab tests can detect it.
Infectious disease expert Charles Chiu, MD, PhD, an associate professor of laboratory medicine and medicine and director of the UCSF-Abbott Viral Diagnostics and Discovery Center says, “The period during which you can find the bacterium in blood is very brief, generally a few days at most.” 16
Stealth and Elusiveness: Lyme bacteria can slip by our immune system’s defenses by changing its “antigen” or what I call its “bio-signature” to fool the immune system into not recognizing and attacking it as an intruder. 17
Like a fake ID, this can let the infection go undetected by standard tests for months, allowing the infection and symptoms to flourish as it did in my case.
Even worse, the infection can cause our immune system to attack healthy cells that come into contact with the rogue antigens.
This can give rise to what experts call “autoimmune” diseases, where the immune system can’t distinguish between healthy cells & foreign invaders, misleading the body to literally “attack” itself, as our immune system death squads deploy to hunt down and kill what appear to be enemy molecules, but are really healthy tissues.
Many experts say misdiagnoses are a common problem for Lyme disease patients, that in some cases can lead to delayed treatments. “Symptoms of Lyme disease sometimes closely resemble those of other illnesses. Chronic Lyme disease, for instance, has symptoms very similar to those of several other chronic illnesses, such as juvenile idiopathic arthritis, fibromyalgia, and myalgic encephalomyelitis/chronic fatigue syndrome. Multiple sclerosis and arthritis also have symptoms similar to Lyme disease”. 18
Daniel Cameron, MD, MPH agrees. Patients with Lyme disease have been incorrectly diagnosed with: multiple sclerosis (MS), fibromyalgia, chronic fatigue syndrome, autoimmune diseases including lupus and rheumatoid arthritis, polymyalgia rheumatica, thyroid disease, and psychiatric disorders, among others. 19
Armor-like defense:
Lyme bacteria often form “biofilm”- a slimy, self-protective, protein barrier or “shell” that lets them thrive under cover, by hijacking calcium, magnesium or available nutrients from the body to feed themselves. With key nutrients depleted, our body becomes too weak to fight the infection on its own and we can become more fatigued, and feel sicker due to greater symptoms.
Like a shield, biofilm also helps the bacteria resist our immune system’s attack cells, lab test detection, and the antibiotics prescribed by doctors.
This helps explain why many Lyme sufferers like me found antibiotics by themselves fail to treat Lyme symptoms: if they can’t “bust” through and penetrate biofilm to get into the cell in the first place, they are unlikely to kill the bacteria, so it thrives inside of us.
Another concern is antibiotics are designed to “indiscriminately kill all gut bacteria, good and bad, thus ridding your body of many really important immune helpers”, 20 namely ‘beneficial’ gut flora that forms an essential counterforce to defeat infections like Lyme.
Experts are concerned the more antibiotics are used, the higher the probability more “good” bacteria is wiped out, and the greater the chance of weakening the immune system, because “80%-85% of our immunity is in the gut wall”.21
Scientists say our gut contains a delicate balance of both good and bad bacteria that must be maintained in order for our immune system to protect us.
Antibiotics have been shown to upset this balance. A recent MIT/Harvard study concluded a common side effect of taking antibiotics is ironically - their ability to lower immune function: “Drugs are producing changes that are actually counterproductive to the treatment effort. They reduce the bacterial susceptibility to antibiotics, and the drugs themselves reduce the functional benefit of the immune cells." 22
3. Treatment
This is another area of bitter debate. On one side of the medical community’s polarized view is the CDC’s position that early-stage treatment with antibiotics usually promotes recovery “rapidly and completely.” 23
Consistent with that is The Infectious Diseases Society of America (IDSA) medical association’s claim that “most cases of Lyme disease are successfully treated with a few weeks of antibiotics”. 24
It’s not surprising the CDC’s antibiotic protocol helps many diagnosed with Lyme disease. Each of us has a unique biochemistry that responds differently to a particular therapy, and some because people have stronger immune systems than others, they’ll tend to respond better to antibiotic treatment. Thankfully many have and will continue to benefit from the antibiotic approach.
But, unfortunately for many of us the prescribed antibiotic treatment fell short, and so continue to have unresolved, persistent or re-emerging symptoms in future months or years. I took multiple courses of antibiotics and had little success in feeling better.
How successful are antibiotics? Citing a recent randomized, double-blind study, The New England Journal of Medicine published: “The condition of most patients with Lyme disease improves after initial antibiotic therapy; however, 10% to 20% of treated patients may have lingering symptoms of fatigue, musculoskeletal pains, disrupted sleep, and lack of customary mental functions.” 25 Some say the number with post-treatment, lingering is much higher. I was definitely in the group with unresolved symptoms.
On the other side of the medical controversy and in sharp contrast to the IDSA, ILADS (The International Lyme and Associated Diseases Society) cites higher post-treatment Lyme disease symptom rates: their 2014 research piece cites studies indicating the rate of people suffering from post-antibiotic chronic illness could ranges in excess of 30%. 26
A recent John’s Hopkins study also shows evidence of severe and lingering symptoms in some after (antibiotic) treatment for Lyme disease. People treated for the bacteria that causes Lyme disease reported fatigue, pain, insomnia, and depression persisting over long periods of time, despite largely normal physical exams and clinical laboratory testing. 27
In addition, The Tick-Borne Disease Working Group of the U.S. Department of Health & Human Services 2018 Report to Congress concluded that patients can experience lingering symptoms for months or years after diagnosis and treatment. 28
The treatment controversy stems from the basic fact that “…Within the scientific community, the concept of Chronic Lyme Disease (CLD) has for the most part been rejected. Clinical practice guidelines from numerous North American and European medical societies discourage the diagnosis of CLD and recommend against treating patients with prolonged or repeated antibiotic courses”. 29
Ironically, one study found that only 6 of 285 (2.1%) randomly surveyed primary care physicians in Connecticut, among the most highly endemic regions for Lyme disease, diagnosed patients with CLD and still fewer were willing to prescribe long courses of antibiotics. 30
Bottom line, we’re looking at a colossal divide within the medical, research, advisory and policy-making communities, compounded by lack of consensus on proper assessment of Lyme disease symptoms, best treatment options, duration of therapies, and even expected outcomes.
It’s a problem so big it explains why so many people cannot find relief from traditional treatment methods.
Lyme disease research: A drop in the bucket
As mentioned, medical testing is one cornerstone of disease management. The same goes for scientific research: it guides the testing that should lead us to answers about how our bodies work, and fall to illness, and which therapies or interventions can help us recover from chronic diseases like Lyme.
Without solid research, even our best health professionals can be disabled from successfully healing patients.
Unfortunately, a severe lack of federal funding and private scientific research is another key factor contributing to the explosion of the Lyme disease crisis.
The Tick-Borne Disease Working Group 2018 Report to Congress states “The U.S. National Institutes of Health (NIH) and the CDC spend $77,355 and $20,293, respectively, per new surveillance case of HIV/AIDS, and $36,063 and $11,459 per new case of hepatitis C virus, yet only $768 and $302 for each new case of Lyme disease.”
Climate and environmental policy change drive tick populations even higher
Environment changes due to global warming are another area of Lyme disease controversy, causing rising numbers of positive cases. Some may deny it exists, but on the EPA’s website in its Report on the Environment called Greenhouse Gases, it notes that “Multiple lines of evidence confirm that human activities are the primary cause of the global warming of the past 50 years”. 31
In her book Lyme, The First Epidemic of Climate Change, Mary Beth Pfeiffer talks about how the warming expands the range of ticks westward from the northeast United States as well as south year after year. It calls out a 112-page EPA report published in 2014 that Lyme disease is being spread by ticks whose “populations are influenced by many factors including climate”. 32
For ticks to be maintained in nature, they need to have what we call an animal host like a rodent that can harbor Borrelia burgdorferi – the bacterium in the tick that causes Lyme disease.
Expansion of the “host reservoir” is also another reason for increasing Lyme disease rates, due to deforestation that scatters predators from natural habitats and promotes host population growth and mobility across the U.S. On the East Coast, the reservoir is the white-footed mouse. In California, the Western gray squirrel harbors the bacterium.
“The explosion of deer in the twentieth century into suburban landscapes, free of wolf predators and with strict hunting restrictions, allowed deer ticks to rapidly invade throughout much of New England and the Midwest. Climate change has also contributed. Warmer winters accelerate ticks’ life cycles and allow them to survive an estimated 28 miles further north each year”. 33
The way forward
The Lyme disease epidemic is fraught with controversy. Thankfully now that we know more about the enemy and the nature of the challenge, it can be easier to beat using all our powers: mental, emotional, physical and spiritual.
There’s no one right way to carry out your healing process, or one set of solutions that works for everyone. So, it’s important to be patient with yourself, keep an open mind and know there’s a solution that can work for you too.
Now that you’re committed to getting healthy, you’ll find some hidden benefits and to taking action; even though feeling better may seem like it’s a long way off.
No matter how dire our situation or how big this challenge feels, we all have the chance to overcome any illness, make our life what we want it to be, and create the best version of ourselves.
Great news is, our power to do that grows with each action we take to step forward, no matter how daunting it may feel. Once we take full responsibility for our health, with guided action we can take back control of it. Again, take big, bold steps and never give up.
If all you can do is crawl, start crawling…As you start to walk on the way, the way appears.
Rumi (1207 – 1273 AD)
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