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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

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.

Source

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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    • donotfear profile image

      donotfear 2 years ago from The Boondocks

      Excellent article! You are a great asset to the Lyme community. This article laid it all out in an easy to understand format. It's difficult to cover the whole controversy in so little space.

      I've been a part of the Lyme community since 2010. Fortunately, I'm one of the lucky ones that got treatment early on with a Lyme literate doctor. Keep on writing and sharing!

    • RockyMountainMom profile image
      Author

      RockyMountainMom 3 years ago from Montana

      Sally--until I contracted it myself, I and most other local biologists would have accepted that it is only a risk in certain areas. But we hadn't had cause to question the faulty biology behind that assertion. Now that I see all the missing information that would be needed to make that case, and have met so many people from around the world with this disease, I know it is far more wide spread than I ever would have imagined. It is not counter to spread of other diseases, and has even more avenues for distributing itself widely. So it is not surprising physiologically, just surprising that agencies are making false claims (which, working for an agency, I don't say likely). If a person were able to calculate the actual damage this disease were doing to each nation's economy, there would have to be change in response and awareness. Then again, I'd hope the information already available would have made a difference by now. It's pretty eye opening once this information or illness crosses your path. So glad you didn't get it, it's not fun!

    • RockyMountainMom profile image
      Author

      RockyMountainMom 3 years ago from Montana

      Judy--Very few people, even if well informed, have such a diligent friend to call! Even among biologists, I don't know of anyone who had carefully checked for all the parts. In fact, I've heard many, many tick removal stories and very few folks took that level of care. The microscope was quite a blessing to have on hand! I think one of the major problems in tick occurrence mapping is the reliance on reports of species, since the general public often doesn't know one species from another---and doesn't know to look carefully at or save the tick. Also....the average bathroom tweezers would be much harder to remove a tick correctly with than most people realize. I've heard of a few tick removal tools on the market, but haven't seen any up close. So glad for your friend that he had you to call!

    • Judy Filarecki profile image

      Judy Filarecki 3 years ago from SW Arizona and Northern New York

      Excellent Hub. I live in the northern Adirondacks of NY, and we are constantly checking for ticks. Just this summer a friend of mine called panicked because he had a tick on his back. Fortunately he had a pare of very thin tweezers specifically for removing ticks and I was able to slip them under the body and the head and completely remove. He had a microscope and we looked at it. I did get the whole thing and it was still very much alive and moving. It was not inflated at all so it must have only very recently gotten on him. It made me much more conscious about checking my self for ticks every evening.

    • sallybea profile image

      Sally Gulbrandsen 3 years ago from Norfolk

      RockyMountainMom

      Creating awareness of this disease is so important. I had not realized that it were so widespread. I was bitten by a tick whilst on holiday in France a few years ago and was rather fortunate to escape getting the disease. I am very grateful, especially after reading this info. Thank you for sharing.

    • RockyMountainMom profile image
      Author

      RockyMountainMom 3 years ago from Montana

      Thank you Lab Girl, very well said.

    • profile image

      Luanne 3 years ago from Texas

      This is very important to know. Tick bites are common. Not everyone has the "typical" symptoms. Untreated, misdiagnosis can cause long term problems that many may not associate with untreated Lyme disease. If someone has any symptoms that could be as a result of Lyme disease, he or she should talk to a doctor and testing should be performed....especially if the symptoms are general and also associated with syndromes such as Chronic Fatigue, IBS, Fibromyalgia, etc. Lyme Disease can be hard to pin down and can cause long term harm.

    • RockyMountainMom profile image
      Author

      RockyMountainMom 3 years ago from Montana

      Especially now that it has been reported on all continents, other than Antarctica! Global awareness will continue to be important as testing gets better, because current tests aren't developed for strains other than one single strain from North America---which is a huge problem for patients in general, but especially those beyond North America.

    • sangre profile image

      Sp Greaney 3 years ago from Ireland

      Not a condition I have heard about before or know much about either. Thanks for sharing your knowledge. It always pays to know about these things as you never know if you are someone else you know could be affected by it later on in life.

    • RockyMountainMom profile image
      Author

      RockyMountainMom 3 years ago from Montana

      Every time I hear that, it makes me incredibly happy. Early diagnosis is such an enormous blessing and makes a really big difference.

    • profile image

      sheilamyers 3 years ago

      Thanks for the important information. My aunt was recently diagnosed with Lymes Disease, but the doctors said they caught it early enough she shouldn't have any long-term problems.

    • dilipchandra12 profile image

      Dilip Chandra 3 years ago from India

      Never heard of this disease, thank you for making me learn something new.

    • RockyMountainMom profile image
      Author

      RockyMountainMom 3 years ago from Montana

      Thank you techygran, and I very much know where you're coming from.

      I think this is similar to my own take on my own diagnosis, back when it was chronic fatigue syndrome. A clinical diagnosis alone was not enough for me....I had physiological symptoms that fit (orthostatic hypotension and many others), but they all fit Lyme to a T, now that I know. (It wasn't the disease I was questioning, but I was certainly questioning my having it....as that diagnosis came when they gave up on everything else).

      It was fascinating that insurance companies and federal processes accepted Chronic Fatigue Syndrome without batting an eye (or having proof), but it was such a struggle to have Lyme disease acknowledged, despite the tick bite, symptoms, palsy, and test results.

      Conversely, acquaintances, coworkers, friends, and family, were much more sympathetic with Lyme than CFS. Such a bazaar system and situation.

      It will always fascinate me that 'the system' (in terms of physicians and federal employment processes) finds it easier to accept that my test results are wrong, and that I just happened to contract four or five chronic conditions simultaneously---all coincidental to each other and the tick bite---than to consider Lyme disease.

      The movie no longer sounds like a conspiracy now that I've lived it, sadly...

    • techygran profile image

      Cynthia 3 years ago from Vancouver Island, Canada

      This is a well-organized and researched and succinctly-written article. Several years ago I heard about lyme disease via an acquaintance whose daughter was dealing with the horrors of this "mystery ailment".

      Over the past short while I have come across two recent diagnoses: a church friend and my husband's niece. I am not proud of my thoughts in this regard-- when there is an announcement of having acquired this diagnosis with all of the accompanying question marks around its actual status as a bonified disease, I almost feel that it is slipping in to the chronic fatigue syndrome/fibromyalgia/lupus et al League of Diseases that no one really knows much about, but that seem to afflict an amazing number of people. I'm sorry if that sounds callous.

      It was interesting to read about the "CDC Misinformation". I agree that this list does lend itself to the conspiracy theory model.

      When I heard that our niece was diagnosed (via her mother) I was gobsmacked. It all sounds so hopeless (in Canada a Lyme diagnosis appears to mean an expensive trip to the USA for treatment).

      I will watch your videos soon.

      I have voted you up and shared this excellent article. Thank you!