Well, it has been a fascinating and enjoyable ride to enter the world of startup small business and I have learned a ton about things that have nothing to do with medicine which has been refreshingly eye-opening. But I have to confess: I’m itching to get back to doing what I do, which is being a doctor! While waiting for pieces to fall into place so patient enrollment into my new practice can begin (aiming to begin enrollment no later than September 1, 2017 — but hopefully sooner!), I thought I’d hone my medical skills by sharing some knowledge on topics relevant to the season. So let’s talk about Lyme Disease.
Discovered in and named after Old Lyme, Connecticut, Lyme Disease is well understood to be rampant in New England and other states in the northeast U.S., but it can also be found commonly in Minnesota and Wisconsin, and apparently also in Europe where it has been studied as well. The tick that carries it is called Ixodes, sounding like a menacing Greek demon. But it is in fact impossibly tiny in the form most likely to transmit infection, which is the “nymph” stage – that is, not unlike humans, it causes the most trouble during its youth! These Ixodes nymphs, or young deer ticks, are the most active from May through July and are about the size of a pinhead. One of the reasons nymphs are most problematic is their smallness which often makes them nearly undetectable.
Interesting note: before these ticks become nymphs, they are in their larval stage when they actually gravitate toward smaller mammals as hosts, like mice and chipmunks. It is from these rodents and not from deer that Ixodes pick up the bacteria that causes Lyme Disease. By the time Ixodes ticks even see deer for the first time, they are typically adults and known to be less likely to carry the Lyme-causing organism at this point in their life cycles.
This dreaded infection comes from Borrelia burgdorferi which is in a class of bacteria called spirochetes that are shaped to some degree like loose springs or Slinky® toys. Spirochetes like Borrelia are ridiculously difficult to grow in a culture, which makes their long-term presence difficult to prove – more on this to come. In the meantime, let’s walk through how this disease is handled by answering common questions.
What do I do when I am bitten by a tick?
If at all possible, try to remove the tick including its pincers and cleanse the bite area thoroughly with rubbing alcohol. It is important to get those pincers out, since bacteria can be carried in the pincers alone and potentially travel into the bitten host even if the rest of the tick has been removed. It helps to soak the tick’s head before removing it, in rubbing alcohol or something caustic like this that is otherwise safe on skin to get it to let go (for example: a couple months ago I had trouble finding our rubbing alcohol upon discovering a tick attached to my son so I took a page out of “My Big Fat Greek Wedding” and doused it in Windex… with good success!).
Save the tick in a clear plastic bag (like a sandwich bag) and call your doctor promptly. Do your best to estimate how long the tick was attached to your skin. Ixodes ticks that have been attached for less than 72 hours (3 days) are less likely to have transmitted Lyme Disease, and it may be reasonable to take a single prophylactic (preventive) dose of an antibiotic to ward off the possibility of having been infected with a tickborne disease. If, however you do not know how long the tick was attached and particularly if it appears plump, a longer course of antibiotics may be appropriate until testing can be completed, but this should be determined by the clinician who evaluates you. Do your best to bring the tick along with you to be looked at by your medical provider.
What do I do if I believe I have been bitten by a tick but there is no insect attached to me?
Often, people can identify bug bites from swelling, a rash, or itching, but a Lyme infection rash has a very characteristic appearance. It is most commonly between 4-6 inches in diameter and has a reddened rim with clearing in the center that may have nearly returned to the appearance of normal skin. In less common but very striking instances, the very center of the rash may turn bright red making it look distinctly like a “bulls-eye” which is supremely unique to Lyme Disease – if you see this, you need to be treated with antibiotics. Whether or not you find a rash like this somewhere on your skin, if you are concerned about a tick bite you should call your doctor to discuss it.
How is Lyme Disease diagnosed?
Because the bacteria itself Borrelia burgdorferi is difficult to grow in a culture, testing for Lyme Disease is not definitive per se – we test for Lyme by measuring special proteins called antibodies in the bloodstream, but this testing does not yield black-and-white results, so several factors must be considered to diagnose Lyme for certain.
How it works: The human body’s defense mechanism – our immune system – kicks into gear when it sees an infection by creating antibodies against it in an effort to fight it off. Different categories of antibodies are produced depending on the timing. The first wave of defense is called “IgM” (immunoglobulin M). It takes the body about a week to produce enough IgM against B. burgdorferi or Lyme to be measured, sometimes longer. The second wave of defense is the IgG antibodies. Measurable levels of this protein can take up to 6 weeks to develop. It is also important to understand that there is more than one “type” of IgM and IgG that are created against the Lyme bacteria. Think of it this way: let’s pretend that instead of a spiral or spring, B. burgdorferi was shaped like a Tyrannosaurus Rex. In order to know it is a T. Rex, we identify it by specific characteristics like the shape of its head, the length of its tail, the presence or absence of spines on its back, the size of its claws, etc. Antibodies that the body creates can only identify one part of the monster at a time – one antibody forms on the jaws, another antibody forms on the claws, and so forth, basically making up a mold or a picture of what the intruder looks like. If it only sees the tail and the head, there is a possibility that it is something other than a T. Rex, just as other dinosaurs have certain features that are similar to the king of prehistoric carnivores. In order to feel confident that we have the organism we think we have, we need as many parts of it identified as possible.
The first-wave IgM “molds” or antibodies usually melt away with time. Meanwhile IgG antibodies are formed, they are present for life. Since IgM shows up relatively quickly then disappears with time, we often use the measurable presence of these antibodies in the blood to indicate that an infection has shown up recently. When we detect IgG in the bloodstream, it simply means that an exposure to an infection has occurred at some point in a patient’s life, but we can’t tell from IgG alone how long ago that exposure might have been.
Why do we treat with antibiotics before knowing what it is?
While the body is creating clay molds of the invader, the bacteria is doing its work and multiplying, wreaking havoc and causing disease. Most of the problems caused by Lyme Disease occur after it has proliferated to fairly high levels and spread through the body. If it never gets a chance to do this, the disease can be prevented. Since B. burgdorferi is such a bad actor, we prefer to nip it in the bud and treat early rather than waiting a week or more to see whether the proper IgM’s can be measured in the bloodstream.
What does Lyme Disease actually look like? Is it just a rash?
Lyme is so much more than the bulls-eye rash, to the point that it can affect almost any system in the body with terrible effects. The most common form of Lyme Disease consists of generalized fatigue, joint and muscle aches “all over,” a foggy mind, and low grade fevers. More severe cases can contain higher fevers. The worst situations involve an attack on the nervous system with problems as serious as meningitis or paralysis, or involving the heart where it can completely disrupt the rhythm and in rare situations even cause the heart to stop beating. In short, Lyme left unchecked can be life-threatening, which is why it is so important to seek early evaluation and get treatment if appropriate.
What is the treatment for Lyme?
If a tick has been attached for less than 3 days, if it was not engorged or plump when it was removed, or if the suspicion of Lyme is otherwise low enough (such as if no tick was found and the rash does not look close enough to the typical bulls-eye pattern), a single dose of doxycycline is considered adequate to kill off what may be a few copies of the bacteria in the body, if any. If a patient has an allergy to doxycycline or medications like it, other treatments include amoxicillin or cefuroxime. In cases of higher suspicion (finding an attached and engorged deer tick, seeing the bulls-eye rash, developing generalized symptoms like fevers, muscle aches or fatigue), a full course of antibiotics is warranted which can last between 2-3 weeks. Sometimes IV antibiotics are needed for a new case of Lyme in its acute stage, which should be determined by your doctor.
What is the deal with Chronic Lyme Disease?
This is sometimes felt to be a controversial topic. As a physician, I consider it important to report on the science, and at the same time I believe every case should be looked at and discussed individually. There is no shortage of patients who develop Lyme Disease then suffer for months or even years with a sense of being able to do absolutely nothing: the fatigue, aches, foggy mind, and fevers can be relentless and cause people to feel like they have lost their sense of self, which also leads to depression. It is simply a terrible experience.
There really is no great evidence that the symptoms deemed as Chronic Lyme truly represent an ongoing infection with the B. burgdorferi bacteria. As mentioned earlier, the bacteria itself is difficult to reproduce by way of a culture, so its presence is only identified by the “clay molds” or antibody levels in the blood. Some clinical providers test for IgM and if it is present they will argue that there must be an active infection since IgM levels generally disappear a certain amount of time after they are first formed upon newly discovering an invader like a bacterial infection. However, the science supporting this is weak, and treating against Lyme with long-term antibiotics seems to potentially cause more harm than good, showing limited improvement of symptoms while being accompanied by side effects from the medications.
My personal experience with this as a physician has followed along these lines. I had one patient in particular who visited non-physician “Lyme Disease specialists” and was tested for all types of infections that have nothing to do with Lyme Disease, and treated with so many types and rounds of antibiotics I almost couldn’t count them. Meanwhile he felt awful – sick all the time, which was deeply depressing since he had been completely healthy and active his entire life before encountering this problem well into his 50s. I advised him to stop all antibiotics and just try living as cleanly and actively as he could tolerate. After a couple of months, he was doing much better: still fatigued and weak, a little cloudy in his thinking, but that was it. I have also had personal family and friends assaulted by Lyme Disease that took over their lives for months or even more than a year at a time, but it eventually cleared and they are completely back to normal.
It is a very slippery slope, in my opinion, to try attacking general fatigue with long-term antibiotics. Vague symptoms like weakness, aches and clouded thinking are common consequences of an immune system that is constantly active, in other words chronic systemic (or whole-body) inflammation. An infection does not have to be present to activate the immune system – in fact there are a host of other potential causes for generalized inflammation – and taking antibiotics without a true infection to treat can cause its own problems such as disruptions in the body’s friendly bacteria or strengthening of other bacteria into resistant forms that can cause worse problems down the line. Again, at the end of the day situations like this need to be evaluated one-on-one with a personal physician.
Identifying and treating Lyme Disease can be as simple as taking one single prescription pill or as complicated as requiring regular appointments for years to monitor or long-term complications. At the end of the day, it helps to have a primary care provider who will pay attention to the details of your situation and determine the best approach to your personal diagnosis and management based on the latest and most trusted scientific knowledge.
Whatever your case, do not hesitate to advocate for yourself and your family’s health care needs. Having a primary care provider that is attentive, personal and complete should be the standard not a “lucky find.” Resetting the quality of medical care is truly in the hands of patients, but only if patients understand that they have this power. It is your health, take it back in partnership with a PCP that is right for you, wherever you are.
- Lyme disease data tables. Reported cases of Lyme disease by state or locality, 2005-2015.
- Time for a Different Approach to Lyme Disease and Long-Term Symptoms. Michael T. Melia, M.D., and Paul G. Auwaerter, M.D. N Engl J Med 2016; 374:1277-1278. March 31, 2016. DOI: 10.1056/NEJMe1502350