Lyme Disease: Pitfalls of a Broken System
by Paula Jackson Jones
“A search for truth seems to me to be full of pitfalls. We all have different understandings of what truth is, and we’ll each believe—or we are in danger of believing—that our truth is the one and only absolute truth, which is why I say it’s full of pitfalls.” ~ Jocelyn Bell Burnell
When it comes to Lyme disease, there are many pitfalls. Often, we are blinded by trust or our desire to feel better, so we don’t see things as they are until we look back. Sometimes we have no idea that the medical providers we trust don’t know what we’re experiencing, let alone how to properly treat it. Patients face so many hurdles when it comes to diagnosing and treating Lyme disease.
Where tick-borne disease is concerned, we have a broken system. Given what we’ve been experiencing the past few months with the novel Coronavirus, this concept may unfortunately feel more familiar to some of you now, while others who have already been dealing with Lyme may have wearily recognized the problems as more of the same.
Pitfall #1: Physician Knowledge
Knowledge and experience are all over the map, and many providers may hold fast to their beliefs without considering the opinions of their patients and other providers. Many patients, who receive inconclusive diagnoses, are left wondering if they need to find a different provider, one who will treat their infection properly. In truth, not all medical providers are knowledgeable about tick-borne disease. Some still use outdated protocols that science has proven ineffective.
Pitfall #2
What are you treating? If you don’t know what you have, how can your provider possibly treat it? Many doctors give their patients one-size-fits-all diagnostic tests and treatment. But as leading pediatric Lyme specialist Dr. Charles Ray Jones says, “If they are not looking for it, they won’t see it.” In some cases, unreliable diagnostic tools are still being used because most medical providers think that they can use one test for all tick-borne diseases. Rather, each tick-borne disease has its own test and its own treatment.
The ELISA and Western Blot tests only identify one strain of Borrelia (Lyme disease), but there are multiple strains. Additionally, some tick-borne diseases initially present a certain way, and while staying married to the idea of a tick bite (or the presence of a tick bite), patient and providers automatically think it’s Lyme Disease. In the author’s home state of Maine, relapsing fever looks like Lyme and acts like Lyme, but the test for Lyme is always negative. Some providers will treat it, others will not, and all the while, the patient remains sick with a tick-borne infection that no one can name.
Pitfall #3
Even when a patient does receive a clear, accurate diagnosis, they may not be able to afford to treat it. Insurance companies are directed on treatments and coverage by various governing entities. If a medical provider tries to operate outside those boundaries, claims are denied, and the patient pays out of pocket until they no longer can. Then treatment stops or they self-medicate in whatever manner they can afford, which is both ineffective and unsafe.
Pitfall #4
The following statement will not be pleasant to read: There is no test that proves that you are better, and any provider that runs a follow-up ELISA or WB following an antibiotic regime does not fully understand tick-borne disease. The ELISA and WB are antibody tests. Antibiotics suppress your immune system and, therefore, when taking them, the body won’t produce antibodies. So an antibody blood screening immediately following a round of antibiotics will almost always produce a negative result even in the presence of an active tick-borne infection.
Early infection—as early as 48 hours post-tick-bite—requires a PCR test (like a DNA test) that will detect the most miniscule cell of infection. Medical Diagnostic Labs (MDL) offers both the PCR test as well as the antibody test that is highly recommended at the six-to-eight-week point (without antibiotic use). Most Lyme-literate providers offer these tests, and the good news is that MDL accepts all insurances including Medicare. More good news? As a patient, you have the right to determine where your bloodwork goes, so when suspecting a tick-borne disease, you should choose a lab, like MDL or Igenex, that has over 20 years of experience dealing with tick-borne infection.
Pitfall #5
There is a saying in the Lyme community that “you won’t get it until you get it”, meaning you won’t fully understand how devastating a tick-borne disease can be until you experience it first-hand as a patient or caregiver. The many misdiagnoses, the treatments that fail to get you better, the denial letters from your insurance company refusing to pay for treatment, arguments with your spouse on how to afford treatment, the lack of support from friends and family that walk away—it unfortunately needs to be experienced to truly be understood.
These are the realities that patients with tick-borne diseases face every day. They wake not knowing if they can make it to work, stay at work, if they will continue to have a job, if their medical provider will refill a prescription and if their insurance will cover it. They wake to find relationships torn, friendships strained, their children ostracized at school and notices of debt collection in the mail.
But there are nuggets of hope, stories of inspiration, messages to hang on to, if patients can find advocates, good information, and a supportive community. Recovery is possible.
Paula Jackson Jones is the president of Midcoast Lyme Disease Support and Education, the 2018 co-chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and is active in Maine’s Lyme legislation. You can reach her at [email protected] or visit MLDSE.org.
When it comes to Lyme disease, there are many pitfalls. Often, we are blinded by trust or our desire to feel better, so we don’t see things as they are until we look back. Sometimes we have no idea that the medical providers we trust don’t know what we’re experiencing, let alone how to properly treat it. Patients face so many hurdles when it comes to diagnosing and treating Lyme disease.
Where tick-borne disease is concerned, we have a broken system. Given what we’ve been experiencing the past few months with the novel Coronavirus, this concept may unfortunately feel more familiar to some of you now, while others who have already been dealing with Lyme may have wearily recognized the problems as more of the same.
Pitfall #1: Physician Knowledge
Knowledge and experience are all over the map, and many providers may hold fast to their beliefs without considering the opinions of their patients and other providers. Many patients, who receive inconclusive diagnoses, are left wondering if they need to find a different provider, one who will treat their infection properly. In truth, not all medical providers are knowledgeable about tick-borne disease. Some still use outdated protocols that science has proven ineffective.
Pitfall #2
What are you treating? If you don’t know what you have, how can your provider possibly treat it? Many doctors give their patients one-size-fits-all diagnostic tests and treatment. But as leading pediatric Lyme specialist Dr. Charles Ray Jones says, “If they are not looking for it, they won’t see it.” In some cases, unreliable diagnostic tools are still being used because most medical providers think that they can use one test for all tick-borne diseases. Rather, each tick-borne disease has its own test and its own treatment.
The ELISA and Western Blot tests only identify one strain of Borrelia (Lyme disease), but there are multiple strains. Additionally, some tick-borne diseases initially present a certain way, and while staying married to the idea of a tick bite (or the presence of a tick bite), patient and providers automatically think it’s Lyme Disease. In the author’s home state of Maine, relapsing fever looks like Lyme and acts like Lyme, but the test for Lyme is always negative. Some providers will treat it, others will not, and all the while, the patient remains sick with a tick-borne infection that no one can name.
Pitfall #3
Even when a patient does receive a clear, accurate diagnosis, they may not be able to afford to treat it. Insurance companies are directed on treatments and coverage by various governing entities. If a medical provider tries to operate outside those boundaries, claims are denied, and the patient pays out of pocket until they no longer can. Then treatment stops or they self-medicate in whatever manner they can afford, which is both ineffective and unsafe.
Pitfall #4
The following statement will not be pleasant to read: There is no test that proves that you are better, and any provider that runs a follow-up ELISA or WB following an antibiotic regime does not fully understand tick-borne disease. The ELISA and WB are antibody tests. Antibiotics suppress your immune system and, therefore, when taking them, the body won’t produce antibodies. So an antibody blood screening immediately following a round of antibiotics will almost always produce a negative result even in the presence of an active tick-borne infection.
Early infection—as early as 48 hours post-tick-bite—requires a PCR test (like a DNA test) that will detect the most miniscule cell of infection. Medical Diagnostic Labs (MDL) offers both the PCR test as well as the antibody test that is highly recommended at the six-to-eight-week point (without antibiotic use). Most Lyme-literate providers offer these tests, and the good news is that MDL accepts all insurances including Medicare. More good news? As a patient, you have the right to determine where your bloodwork goes, so when suspecting a tick-borne disease, you should choose a lab, like MDL or Igenex, that has over 20 years of experience dealing with tick-borne infection.
Pitfall #5
There is a saying in the Lyme community that “you won’t get it until you get it”, meaning you won’t fully understand how devastating a tick-borne disease can be until you experience it first-hand as a patient or caregiver. The many misdiagnoses, the treatments that fail to get you better, the denial letters from your insurance company refusing to pay for treatment, arguments with your spouse on how to afford treatment, the lack of support from friends and family that walk away—it unfortunately needs to be experienced to truly be understood.
These are the realities that patients with tick-borne diseases face every day. They wake not knowing if they can make it to work, stay at work, if they will continue to have a job, if their medical provider will refill a prescription and if their insurance will cover it. They wake to find relationships torn, friendships strained, their children ostracized at school and notices of debt collection in the mail.
But there are nuggets of hope, stories of inspiration, messages to hang on to, if patients can find advocates, good information, and a supportive community. Recovery is possible.
Paula Jackson Jones is the president of Midcoast Lyme Disease Support and Education, the 2018 co-chair of the Access to Care Services and Patient Support subcommittee of the Federal HHS Tick-borne Disease Working Group, the Maine partner of the national Lyme Disease Association, member of Maine’s CDC Vector-borne Workgroup and is active in Maine’s Lyme legislation. You can reach her at [email protected] or visit MLDSE.org.
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