Lyme disease is known for leading confused patients to seek second, third and more opinions. Patients consult providers with a myriad of symptoms that span multiple systems, commonly complicated further by “brain fog.” Yet, even in the most endemic of states, it remains challenging to share scientific information with the public about this most formidable foe, the “borrelia” bacteria that causes Lyme disease from a tick bite. Here are the “reasons behind the rift” to help the public navigate the perplexing landscape of tick-ridden Connecticut and its disagreeing clinicians.
The rest of the world calls Lyme disease “borreliosis”.
Borrelia are present in different strains around the globe and represent the most common tick-transmitted infection.In the U.S., the disease caused by borrelia Burgdorferi takes on its name after Lyme, Connecticut, where a strain of borrelia was determined to cause a spike in cases of juvenile arthritis that became linked to tick bites and a characteristic “bulls-eye” rash. Unfortunately the term, “Lyme disease,” is thrown around for any symptoms following a tick bite; this is despite the fact that there are endemic co-infections that all types of ticks can transmit. Other endemic tick infections include Erhlicia and Babesia. Some strains of these cannot be tested, and may also be carried by dog ticks. The fool-proof way to ask a provider if there is a Lyme disease concern is to directly ask if the symptoms are related to borreliosisor any other tick-borne infections. Diagnosing borreliosis, however, is not so simple.
Not everyone sees a tick, “bulls-eye rash” or spikes a fever.
To feed fully, ticks bite with an anesthetic, so we do not feel them like a mosquito bite; but if you are fortunate enough to see a bulls-eye rash, be sure to photograph it and track the size. Your provider will not need blood work to confirm that you have contracted borreliosis; the rash is diagnostic. Fever, an immune response to infection,may not ever occur. For those that miss a rash, tick or fever, flu-like illness in the spring or summer should be treated very seriously as it may be your only clue that an infection from a tick has occurred. If a practitioner describes your illness as “viral,” request testing to determine conclusively which virus. Otherwise, seek prompt treatment for a tick bite, since testing for Lyme disease is unlikely to test positive during acute illness.
Rather than looking for the bacteria directly, the test for borreliosislooks at whether your immune system has encountered it.
Unlike strep throat, which doctors can sample and grow rapidly in a petri dish, borrelia are very difficult to locate and can take up to four months to culture. Instead, the Lyme test looks for evidence in your blood. The test collects antibodies from your blood, which are made by the immune system to fight specific infections. The antibodies (“key witness”) are presented with proteins from borrelia to see if it recognizes it, a result that could only occur if the patient’s immune system had encountered borrelia before. One problem with this method is that it assumes all immune systems recognize and fight borrelia equally. However, “neurolyme” patients may have weakened immune responses to borrelia, and are less likely to test positive than patients with mainly chronic joint problems. Indeed a study from the University of California Davis found that mice infected with Lyme bacteria were not able to produce antibodies to a separate infection challenge: the flu vaccine. Does borrelia, like other well-adapted infections, find a way to weaken the immune system in some patients?
Furthermore, the test has two levels with 35 percent of late Lyme patients never passing the first tier. For those that do, the second tier may in fact show that the “key witness” did recognize proteins from borrelia; however, due to criteria set during the now-cancelled Lyme vaccine trials, critical proteins (called “bands”) were removed from the test interpretation. Importantly, some clinicians will include these otherwise ignored “vaccine bands” as valuable evidence of active Lyme infection, whereas others will not; therefore, clinicians will interpret the Lyme disease testing differently.
Providers have a deep divide in the diagnosis and treatment of Lyme disease.
Herein reveals the controversy. In fact, two clinicians side-by-side suspecting borreliosismay give contradicting care. To explain, when determining diagnosis and treatment of any illness, medical boards assemble data, debate, and create a standard of care that is largely adopted by insurance companies to gauge rates of reimbursement. More than 25 medical conditions, however, have more than one standard that is supported by scientific literature and expert opinion: Borreliosisis one of them. For Lyme disease, the political rifts were wide enough to result in standards of care that actually conflict.
The vast majority of practitioners will refer to the Infectious Disease Society of America (IDSA) Standard of Care, which relies heavily on two-tiered testing using technology more than two decades old. This test, developed for public health surveillance, is used to validate clinical decisions irrespective of patient history or preference for care standards. IDSA clinicians may prescribe anywhere from one capsule to three weeks (rarely longer) of an antibiotic for a positive test or bulls-eye rash. This standard of care is represented in medical school training in the U.S. For suspected false-negative test results, they advise to “retest later.”
The International Lyme and Associated Disease Society (ILADS) published the other standard of care in the heavily scrutinized National Guidelines Clearinghouse in 2014, which requires broad post-graduate training in the diagnosis and treatment of tick-borne infections. ILADS-trained clinicians (sometimes referred to as “Lyme-literate”) acknowledge that borreliosisis difficult to diagnose by indirect laboratory tests that miss infection 40-70 percent of the time. They believe it is difficult to treat, as it can turn dormant in the presence of antibiotics (published in microbiology journals as “cyst form”). They acknowledge that it may require expert clinical judgment to eradicate, and it may be confounded by the presence of co-infections, such as babesia. They also say it may persist within “biofilm” as other recurrent infections do, including chronic ear infections.
In 2009, the governor of Connecticut signed a bill requiring insurance companies to extend periods of antibiotic coverage, as well as protecting providers who make clinical diagnoses when suspecting a Lyme test is a faulty negative. This resulted from intense patient advocacy due to destroyed lives in the face of clinicians deferring to treat briefly, and according to labs only. People of New England may deal with the stress of disagreeing clinicians, but they are fortunate to have choice in their selection of care. While cases of borreliosisthat are recognized early and treated quickly may not develop complications, many people now actively seek the ILADS standard; this is particularly the case if they recall being treated for Lyme disease as a child and are now dealing with other issues, such as fibromyalgia, irritable bowel or other conditions. Awareness of these two opposing standards of care is vital for New Englanders.