One of the biggest frustrations reported by patients with Lyme disease is a lack of knowledge and understanding shown by healthcare providers. Sadly, many physicians are not well equipped to handle this vector-borne illness that has reached epidemic proportions. Still others fail to acknowledge that chronic Lyme even exists.
Dr. Elizabeth Maloney, president of Partnership for Health and Health, Ltd. is one of a small minority of physicians who is not only well-versed herself on the topic, but seeks to help educate fellow physicians and nurses by developing materials and teaching courses on Lyme disease. In addition, Dr. Maloney has authored a rigorously-supported article discussing the most common controversies surrounding chronic Lyme disease. The article was published last year in the Journal of Infusion Nursing. Here is a summary of the 6 topics discussed in the article, based on a review of the literature to date.
Does “Chronic Lyme” Even Exist?
Probably the biggest controversy of all is whether or not “chronic Lyme” even exists. But should this even be a controversy? A review of the evidence says no. Multiple studies published from the 1980s to the present, have shown that a significant percentage of patients treated for Lyme disease have persistent symptoms. (This is true for all stages of the disease, though those treated for acute Lyme have the best outcomes.) The argument that symptoms cannot be attributed to treatment failure and must be caused by the onset of new unrelated conditions simply doesn’t hold up. This might be reasonable to consider if the percentage of people in the general population (with the same demographics) were equally afflicted as those with previous infection, but that’s not the case. It has been demonstrated, for example, that Lyme patients are 5 times more likely to suffer from arthritis than matched controls who have no history of Lyme disease.
If So, What Should It Be Called?
In the early literature on Lyme disease, the term “chronic” was used often to describe ongoing symptoms, without specifying the exact mechanisms at play. Eventually, however, the term came to infer that these persistent symptoms were likely caused by ongoing infection with B. burgdorferi despite treatment. At that point, the term “chronic” was rejected by the IDSA (Infectious Diseases Society of America) and CDC and replaced with the term post-Lyme disease syndrome, since these organizations dismissed the possibility of treatment failure. Considering there is no definitive way to prove successful eradication of the bacteria nor markers to diagnose mechanisms that would cause this “post-Lyme disease syndrome,” it seems as though patients and clinicians who use the term “chronic” have been marginalized for no well-supported reason. Dr. Maloney and others have begun to use the term “persistent Lyme disease” to describe those who remain ill following treatment, in order to avoid the negative bias now associated with “chronic Lyme disease.” Even though we still don’t know definitely all the mechanisms involved in this complex illness, it is well established that many patients remain ill. These people need to be helped, not dismissed.
Who Does it Affect?
While many clinicians and government agencies minimize the extent and ramifications of persistent Lyme disease, there is solid evidence demonstrating the widespread effects on both the quality of life of those directly affected and also on the economics of the country as a whole. In other words, it affects everyone in some way. A large retrospective study looking at insurance claims of over 50,000 patients showed that those with persistent Lyme symptoms paid over $3,800 more in health expenses (over 12 months) than those who were symptom-free after treatment. In addition, multiple NIH (National Institutes for Health) studies and patient surveys have revealed that those with persistent Lyme disease have significant impairments in health. One survey only included those who had positive 2-tier testing along with skin manifestations of infection. Among this group of over 1,000 participants, 72% rated their health as “fair” or “poor” and 39% had to stop working as a result. And this is only a very small sampling of the entire Lyme community since it does not include those diagnosed based on clinical symptoms. Clearly, this is a public health crisis. Even the CDC acknowledges that at least 300,000 people are being infected each year.
Is Testing the End All, Be All?
Since the current serological tests for Lyme disease that are commonly used among physicians only measure antibody response to B. burgdorferi and not the presence of the bacteria itself, diagnosis and treatment should not be based on these tests alone. Another problem with these tests is that antibody response normally changes over time and those who report ongoing symptoms are more likely to have an abnormal antibody response. When immune suppression or dysregulation is present, the body may not be able to mount a proper immune response. In monkeys, it has been demonstrated that persistent infection can exist despite a negative antibody test. Serological antibody tests also do not offer any insight into other mechanisms that may be at play in ongoing illness. Unfortunately, this is another crucial area where clinicians are uneducated and often fail to take clinical signs and symptoms into consideration, which should take precedence over these inadequate tests.
What’s Causing Persistent Symptoms?
Not only is there a lack of evidence disproving persistent infection with B. burgdorferi, there is actually mounting evidence in favor of it. An NIH-funded study found DNA evidence of B. burgdorferi infection in a previously uninfected tick after it fed on an individual treated for Lyme disease over a year earlier. This finding cannot be blamed on bacterial “debris” since the body normally clears it quickly. Active infection is the more likely cause. Various types of animal and human studies, including testing of post-mortem tissue samples, have concurred that chronic infection can persist even after treatment. It is also very possible that other mechanisms exists in those with ongoing illness. Many researchers and clinicians accept the possibility that multiple things may be at play that could account for persistent symptoms. These include tissue damage, immune dysfunction/autoimmunity, secondary conditions brought on by previous exposure, other types of infections, etc. It is likely that more than one of these is to blame in many patients. However, there is only a small amount of data so far supporting these other theories and yet many physicians seem to acknowledge all of them except for persistent infection, for which there is substantial evidence. This is puzzling.
Are Long-Term Antibiotics Effective?
Even among those who acknowledge the likelihood of persistent infection, there is disagreement over the safety and effectiveness of long-term antibiotics. It is important to note that one of the main studies cited in argument against long-term antibiotics treatment (Klempner et al) was poorly designed and biased. On the other hand, other well-designed studies demonstrated significant improvements in many patients, with adverse events only occurring about 5% of the time. These researchers suggest that their findings support more research into other types of antibiotics and protocols and different administration methods to minimize risks and maximize outcomes in selected patients. One of the problems with focusing on symptom management and ignoring the possibility of active infection, is that immune-suppressing drugs may do more harm than good over time since they lower the body’s ability to fight infection (despite helping short-term with symptoms in those with immune dysregulation).
While the topic of Lyme disease continues to be controversial, a careful and unbiased review of the available data should reveal that simply educating healthcare professionals could settle many of these arguments. The mechanisms involved in persistent Lyme disease, along with determining the best methods of treatment, are areas that require further research. However, open-minded and objective clinicians and organizations should unite to address what is clearly a major public health crisis and affecting many patients long-term. The fact that we need better testing and diagnostic criteria, the reality that patients often remain sick long after treatment, and the tragedy that those using the term “chronic Lyme” were unfairly stigmatized, should all be widely accepted at this point and it’s unfortunate they are not.
1. Maloney, E. Controversies in Persistent (Chronic) Lyme Disease. Journal of Infusion Nursing. 2016; 39(6): 355-59.