Two Standards of Care

Medically recognized standards of care and diagnostic practices are, generally, the only medical source that physicians, medical boards, and associations will accept when considering treatment for a condition. These standards are viewed and used as the appropriate response to diagnosing and treating individuals.

In the case of Lyme disease, there are twostandards of care – one from the International Lyme and Associated Disease Society (ILADS), and the other by the Infectious Disease Society of America (IDSA) – that are recognized by different sectors of the medical community. And, this situation is not as uncommon as it might seem.

Up until its demise in July of 2018, the National Guidelines Clearinghouse had identified, at least, 25 conditions with differing sets of guidelines from separate organization. According to the Health and Medicine Division (HMD) (formerly known as the Institute of Medicine [IOM]), conflicting guidelines are created for a condition because of any of the following factors:

• The evidence supporting both sets of guidelines is weak

• Different organizations use differing methods to assess the evidence that is available

• The professionals developing the guidelines place differing values on the benefits and harms of treatment methods

The differing guidelines for Lyme disease are likely due to all three of the above factors. Though there has been much valuable research into Lyme and other tick-borne diseases, there is still much, much more that needs to be done. And, the representatives from both IDSA and ILADS have assessed the available evidence, and come to different conclusions about both the definition of the disease and how it should be treated.

How Do Conflicting Guidelines Affect Treatment?

While the IDSA guidelines offer a rather narrow, wait-and-see approach to the diagnosis and treatment of Lyme Borreliosis, the ILADS guidelines are more preventative in nature, and take into account the complexity of the disease, covering a wider scope of symptoms, disease strains, co-infections, and treatment options.

But, you might be asking, “How would this affect my visit to the doctor?” To answer this question, let’s take a look at just one example of the differences in the approaches of these two sets of guidelines.

Let’s say that you find a tick attached to your body after a walk in your local park, and, after a few days, decide to go to the doctor to find out what your next step should be.

If you go to a physician who strictly adheres to the IDSA guidelines on Lyme, he or she will likely not give you a single dose of doxycycline (which is all the guidelines allow) as a preventative measure against infection, unless you can satisfy all of the following points:

• The tick must be reliably identified as an adult or nymphal deer tick that is estimated to have been attached for more than 36 hours – which is established either by how engorged with blood the tick is, or your certainty about when you actually encountered the tick.

• The doxycycline can be started within 72 hours after you removed the tick.

• The local environmental information must indicate that more than 20% of the deer ticks in the region are infected with B. burgdorferi (the Lyme-causing bacteria).

• You are not allergic to doxycycline or cannot use the drug for another reason (e.g. if you are pregnant or a child under 8 years of age).

The IDSA physician will also likely tell you that the blood tests used to diagnose Lyme disease will not be trustworthy for a few more weeks, so it would be best to wait and see if any symptoms develop – specifically, an EM or bull’s eye rash.

However, if you visit a doctor who follows the ILADS guidelines for tick-borne illnesses, he or she will evaluate your case as an individual situation and take all of your symptoms into consideration – notjust the ones that satisfy a narrow set of criteria. And, if infection from the bite is likely, you could be offered a multiple week course of doxycycline or another antibiotic, depending on your unique patient picture.

The doctor will not completely rule out infection by relying on external information (e.g. statistics about infected ticks in your area), or set a rigid number of doses of medication for effective treatment.

Instead, the physician will discuss the benefits, risks, and options associated with the preventative treatment with you, and then you can decide with your physician what the next step should be. You will be given a choice as to whether or not you want to take the preventative antibiotic course to head off any possible infection off before it has a chance to dig in.

One crucial thing to keep in mind about treatment options for Lyme disease is that every single patient is different – especially in later stage cases. Once Lyme has been introduced into (and gains a foothold in) the body, it becomes intertwined with a myriad of other factors (e.g. immune system condition and genetics) that profoundly affect how the disease will progress, and make every treatment plan unique.

The above example represents just one area where the ILADS and IDSA guidelines on Lyme disease differ. There are also distinct differences in how these guidelines approach late-stage infections that have a complex, chronic symptom picture.

In general, while the IDSA guidelines call for narrower and short-term treatment approaches to the dizzying array of late-stage symptoms a patient faces, the ILADS guidelines promote individualized treatment approaches with open-ended and symptom-specific treatment protocols.

To read both sets of guidelines and see more research about the diagnosis, treatment, and persistence of Lyme, please visit our Research page.