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Why Are Lyme Disease Patients Waiting Years for Treatment?

Updated on May 14, 2016
Lyme Disease Rally outside of IDSA conference in San Francisco, October 2013.
Lyme Disease Rally outside of IDSA conference in San Francisco, October 2013. | Source

Lyme disease was famously identified in the 1970’s when multiple families in Lyme, CT, were afflicted with the same mysterious, painful symptoms.

Controversy has surrounded the diagnosis and treatment of this illness ever since, with debates arising over nearly every aspect of this disease.

This includes (but is not limited to):

  • Geographic distribution
  • Diagnostic criteria
  • Testing criteria
  • Treatment protocols
  • Duration/persistence
  • Which ticks transmit Lyme disease
  • Existence of chronic Lyme disease

This list is the tip of the proverbial iceberg, and volumes could be (and have been) written on each.

Why is a single disease worthy of so much controversy?

Why do so many Lyme disease patients end up sounding like conspiracy theorists (by the time finally they get diagnosed)?

Why This Matters: Costs and Consequences of Misdiagnosis

Lyme disease is caused by infection from Borelia burgdorferi following a bite from an infected tick (though other forms of transmission have been confirmed through recent studies as well). If detected in its early (or acute) phase, many (but not all) cases can be successfully treated with antibiotics.

One of many wheelchair bound Lyme disease patients.
One of many wheelchair bound Lyme disease patients. | Source

Some Commonly Recognized Acute Symptoms

  • Ring-shaped rash (Erythema migrans)
  • Fever, chills
  • Excruciating sore throat
  • Bell's palsy (partial facial paralysis)
  • Joint pain

Some Commonly Missed or Unrecognized Symptoms

  • Lower jaw muscle tightness and pain
  • Sensory sensitivities
  • Overwhelming fatigue
  • Sleep problems
  • Anxiety and irritability
  • Cognitive delays
  • Blood pressure abnormalities
  • Trembling or seizures
  • Isolated or widespread paralysis
  • Abdominal pain or distention
  • Swelling, redness, numbness, or tingling

When Lyme disease persists (either for lack of diagnosis and treatment or when initial treatment is not effective) it can spread throughout the body and cause permanent damage.

San Francisco Lyme rally outside of IDSA convention, October 2013.
San Francisco Lyme rally outside of IDSA convention, October 2013. | Source

Long-Term Consequences

Lyme spirochetes are spiral shaped and can bore into tissues, enabling the disease to impact all parts of the body and all body systems. Lyme can "hide out" throughout the body in spirochete form, and also in cyst and biofilm forms, evading detection and eradication.

Delayed treatment can lead to permanent damage and prolonged suffering, with patients experiencing a devastating loss of quality of life. Long term consequences include personal, professional, emotional, financial, and physical costs, including:

  • Loss of productivity and self worth
  • Loss of hobbies and former lifestyle
  • "Lyme rage" impacting personal and professional relationships
  • Altered relationships with family
  • Loss of friendships
  • Severe, debilitating fatigue and pain
  • Orthostatic hypotension
  • Limited mobility
  • Severe cognitive dysfunction
  • Brain lesions
  • Paralysis
  • Paranoia, anxiety, irritability
  • Food sensitivities
  • Social anxieties
  • Loss of financial security and stability

2013 Lyme Disease Rally poster pleading with IDSA to revise dangerously inadequate testing and treatment protocols.
2013 Lyme Disease Rally poster pleading with IDSA to revise dangerously inadequate testing and treatment protocols. | Source

Inadequate Guidelines from IDSA and CDC Lead to Misdiagnosis and Delayed Treatment

Research on Lyme could use more funding, but in the mean time researchers are steadily adding to what we know about Lyme disease.

Unfortunately, that new knowledge is not being incorporated into policies and guidelines. The CDC continues to post outdated information that was flawed to begin with, and to accept guideline recommendations from the Infectious Disease Society of America (IDSA) despite demonstrated biases and a clear lack of acknowledgement of best available science.

San Francisco Lyme rally outside of IDSA convention, October 2013.
San Francisco Lyme rally outside of IDSA convention, October 2013. | Source

IDSA Guidelines

I still recall during my first viewing of the movie Under Our Skin several years ago that the discussions of IDSA and treatment guidelines sounded a bit like a conspiracy theory. I also remember looking up some of what I remembered afterward and finding it quite easy to confirm.

A panel of experts convened to compile treatment guidelines was almost entirely composed of specialists with vested financial interests in the outcome. This has been investigated repeatedly, even warranting a congressional subcommittee convened specifically to address the issue.

Guidelines include restrictions on the types of testing and interpretation of testing, along with limitations on the type and amounts of treatment. Studies have repeatedly shown that months or years of treatment can be required for many patients, for example, yet IDSA insists that 28 days of antibiotics is sufficient.

Counter to policy of most illnesses, doctors do not have the discretion to treat Lyme disease as they choose unless they do not accept insurance, since the IDSA guidelines allow insurance companies to deny coverage for more than 28 days of antibiotic treatment. These doctors can and have been sanctioned for treating patients with Lyme disease, sometimes losing their medical licenses. And having to pay out of pocket for adequate treatment is a tremendous expense to Lyme patients, sometimes costing them their entire life savings and even their homes.

CDC Misinformation

Here are just a few examples of outdated CDC-supported information that harms patients:

  • Lyme disease can only be contracted in certain states
  • Only deer ticks transmit Lyme
  • Lyme tests only need to use the one strain current tests are based on
  • 28 days of antibiotics is adequate
  • Chronic Lyme disease does not exist

Lyme Diagnosis

Do You Know Someone Diagnosed With Lyme Disease?

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Inadequate Testing

Lyme testing and interpretation are a complicated subject and a complicated task, with and without the influence of illogical guidelines and misinformation.


Timing is a huge obstacle, because testing too soon will miss the disease. Later in the illness, the disease resides in different parts of the body at different times, and is more prevalent in different forms at different times (spirochetes, cysts, and biofilms). Thus timing can cause the disease to be missed, so that many Lyme-positive patients take many years of testing to show up as positive.

False Negatives

Even when timing is not the problem, the test is precise to the one sample of the one strain it was created to test for and false negatives are unacceptably common (studies show an average of 50% incorrect over the course of multiple decades, but include outcomes higher than 80% incorrect).

This means that even if you have Lyme disease and are testing long enough after infection (too soon and the spirochetes and anitbodies will not be detectable) there is only a 20% to 60% chance it will be detected through first tier tests.

Two Tiered Testing

A two tier testing strategy is prescribed through IDSA's guidelines. Patients that do not test positive through first tier tests (which have an approximately 50/50 chance of being wrong) are not tested further, even though the second tier tests are thought to be more accurate.

Patients that test positive have to meet overly stringent interpretation criteria in the second tier tests to be considered CDC positive.

It can take years of testing for Lyme positive patients to show up in laboratory tests as positive.

Revising IDSA's Guidelines & Holding CDC Accountable

If IDSA and the CDC were held accountable for the use of up to date, best available science, current treatment guidelines would look much different, and far fewer Lyme patients would be subjected to delayed and inadequate treatment.


Living With Lyme

As a professional federal biologist who contracted Lyme disease at work (in a state the CDC claims does not have Lyme disease), I know firsthand that these guidelines are costing patients their livelihoods and quality of life. My kids know this first hand, and my husband knew this all too well by the end of my first 3 years of misdiagnosis.

I was not properly diagnosed until Lyme spirochetes had spread, unchallenged, throughout my body for 3.5 years. I was misdiagnosed despite facial paralysis and numerous acute symptoms, all following a tick bite. All because doctors would not consider Lyme disease a possibility, and because they were not educated on proper testing or diagnosis (too hung up on the lack of geographical possibility of Lyme, per CDC).

Best Available Science

Doctors need the education and procedural freedom to properly diagnose and treat patients, understanding that:

  • Two tiered testing is missing too many cases of Lyme disease to be considered reliable for diagnostically excluding the presence of Lyme;
  • Lyme disease is a clinical diagnosis---laboratory testing is only one piece, and “CDC positive” is not a reasonable ‘end-all’ for interpretation of results;
  • Assumptions about deer tick distribution are not adequate for delineating Lyme occurrence or probability of occurrence because:
    • Multiple species of ticks can transmit Lyme disease to humans (as recently confirmed by recent studies),
    • Geographic distributions of tick species and populations are not adequately known,
    • Distributions of many wildlife species that carry ticks are being altered by climate change, as are migratory routes and patterns of wildlife that carry (and migrate carrying) ticks;
  • Symptoms appearing to be psychological or emotional in nature are very typical of Lyme disease symptoms and should be treated as the physiological symptoms that they are, rather than causing a patient’s illness to be discounted;
  • Many or even most Lyme disease patients do not exhibit or do not notice a rash (mine was on my scalp and very easily initially missed);
  • Transmission from tick to human can occur much more quickly than folklore suggests, so that relatively short duration does not negate the potential for Lyme transmission from an embedded tick;
  • Not all patients recall being bitten---for those that do remember, even scientists may not correctly identify the tick species that bit them.

This Movie Could Save or Change Your Life

These facts could have spared me the loss of my career, our life savings, and a significant portion of my kids' childhoods that they've missed out on.

When I saw the movie Under Our Skin early in my illness, I was fighting for my health and my job, and I remember thinking "Thank God THAT's not what I have." But deep down I already knew I did.

Watch as much of this movie as you can. It is worth your time and could save or preserve the life of someone you love. Education can help us fix this.


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