By Raphael Kellman, M.D., Kellman Center for Functional and Integrative Medicine NYC
The mainstream medical community has very clear-cut standards for diagnosing and treating patients who test positive for Lyme disease. On paper it seems quite simple-there are 2 tests for Lyme and patients must test positive on both to be diagnosed. After that, the CDC recommends a course of antibiotics-usually from 2-4 weeks, which is thought to eradicate the problem.
In my practice, I see patients that aren’t cured by a round of antibiotics and often don’t come up positive on the conventional tests. In general, early diagnosis and treatment is more effective. In most cases however, people don’t see the tick or develop the telltale bull’s eye rash. Symptoms are left to develop over weeks, months or years making it difficult to tie back to tick exposure and properly diagnose. For some, even with early antibiotic intervention, symptoms remain and patients are afflicted with long-term illness called chronic Lyme.
Symptoms can mimic many conditions and may include, fever, headaches, debilitating fatigue, muscle and joint pain, chills, memory loss and decreased ability to think and process information. Additionally some patients become extremely sensitive to light and sound, have double vision, dizziness, tinnitus and vertigo. In the worst of cases, patients may develop heart problems, have difficulty walking or controlling motor function. Lyme doesn’t discriminate- function can be impaired in any area of the body.
Chronic Lyme or PTLDS? What’s in a name?
The term chronic Lyme has been used by both patients and alternative health providers to describe persistent and debilitating long-term symptoms despite being treated. It may also apply to cases where a diagnosis was never made so treatment had never been administered although there were years of symptoms.
While the mainstream medical community does not recognize chronic Lyme as being real, the CDC does currently state that 10-20% of patients will develop PTLDS or post treatment Lyme disease syndrome. It is accepted that symptoms in these patients may linger for 6 months or longer, however the cause of this syndrome is not attributed to B. Burgdorferi – the cause of Lyme disease and is listed as “unknown”.
PTLDS or chronic Lyme? You may wonder why it really matters what we call it. Because the CDC and medical community at large does not believe PTLDS is caused by reinfection or continued infection by B. Burgdorferi, patients are currently ineligible for continued healthcare and there are no treatments recommended for these patients. That’s a huge problem. Thousands of sick patients each year are left out of a system that should be there to help them.
To make matters worse, a study from 2015 conducted by The John Hopkins Bloomberg School of Public Health found the number of people inflicted with a chronic condition to be much higher. They concluded that a whopping 63% of patients treated continued to have pain, symptoms and remain ill (1).
Research published by the International Lyme and Associated Diseases Society (ILADS) also found treatment failure rates to be higher ranging from 16-39% for early treatment.
The two-tier testing is missing too many people.
Lyme testing is comprised of a two-tier approach. A screening test is first used to identify people who may have been exposed to the bacteria B. Burgdorferi. This is a general test and studies are showing it is not very accurate. Only patients who test positive on this screening will then move on to be tested using a Western Blot. According to the CDC, patients must test positive on both to be diagnosed with Lyme disease.
Clinically I have seen countess patients whose test results are not so cut and dry, yet they are extremely ill. Sometimes patients will test positive on the Western Blot but not the screening test ELISA or EIA. In others, patient test results will come up positive with some bands but not enough or the correct ones to be considered Lyme infected. Who is to say these guidelines are always right in every case? These are man-made criteria and ultimately the one suffering is the patient.
One study from 2010 found the ELISA to be so ineffective at picking up Lyme disease that it actually missed 54% of patients tested (2). An earlier study from 2002 concluded that 52% of patients studied who suffered from chronic Lyme, tested positive on the Western Blot but not the ELISA (3). These patients failed to meet the proper criteria for diagnosis, yet they were suffering and in need of treatment.
More problems with testing
Screening tests measure antibodies in blood however in some cases, the patient’s immune system will not produce them. Patients that contract Lyme are often in poor health with compromised immune systems that are unable to mount an attack. This can lead to a false negative on testing. Further, patients may test false negative in the early weeks after infection if the body has not yet ramped up its efforts and created antibodies.
Additionally, the corkscrew shape of B. Burgdorferi gives it the ability to burrow deeply into tissues where it may settle in tucked away from the reach of the immune system. In these states, blood tests may not be able to detect its presence.
Testing needs to be put into perspective. While these methods are useful and important, they often don’t tell the full story. The best way to diagnose Lyme is through a well-rounded approach taking into consideration, where the patient has lived or visited, symptoms, timelines of illness progression, overall health, immune function and also testing. There is a feeling, a clinical “smell”, a way of putting it all together that combines the art and science of medicine with heart and soul of patient care to better understand and diagnose. Science can never completely do this on its own. We come closer to understanding the truth if we have a healthy mistrust of the current guidelines for testing.
In my practice I see many many patients who come to us with the same or worse symptoms that they had before being treated the conventional way. These people are chronically ill. Whether you want to call it Lyme disease or PTLDS, their pain and suffering are all too real requiring very real and necessary treatment therapies.
1) Emily R. Adrion, John Aucott, Klaus W. Lemke, Jonathan P. Weiner. Health Care Costs, Utilization and Patterns of Care following Lyme Disease. PLOS ONE, 2015; 10 (2)
3) Donta ST. Late and chronic Lyme disease. Med Clin North Am. 2002 Mar;86(2):341-349