Lyme Disease Diagnosis is Clinical, Not Laboratory Based

tickI see it time and time again.  “My doctor said my Lyme antibody test was negative, so my symptoms can’t be due to Lyme disease.”  This is unfortunate, because many people in this area are becoming infected with Lyme disease, without being properly diagnosed.  Even worse, they give up searching for answers, because their doctors tell them everything is “normal”, allowing Lyme disease to progress into the more chronic stages, potentially causing serious, irreversible health consequences.

On their website, the Centers for Disease Control and Prevention (CDC) state that “Lyme disease is diagnosed based on signs and symptoms” and “a history of possible exposure to blacklegged ticks”.  They go on to say that “laboratory blood tests are helpful if used correctly . . .”  In my experience, most doctors don’t appear to be following these recommendations.  In fact, they seem to be completely ignoring symptoms and history, relying solely on laboratory evaluation.  Another problem is the reliance upon the characteristic “bull’s eye” rash, or the history of a known tick bite.  Have you ever seen how small a deer tick is in size?  The likelihood of knowing you’ve ever been bitten is quite low.  Plus, a 2010 study in the Journal of Emergency Medicine found that only a minority of cases (as little as 9%) exhibited the classic “bull’s eye” rash!  No wonder we’re dropping the ball when it comes to diagnosing this debilitating disease!  Adding to the confusion is the classic example of people visiting so-called Lyme “specialists” who will perform spinal taps or PCR tests on patients, telling them that a negative test is definitive for not having Lyme disease.  Quite frankly, these tests are like looking for a needle in a haystack.  The organisms responsible for Lyme burrow deeply into tissues, so the likelihood of identifying them in serum or cerebrospinal fluid is slim at best.

This doesn’t even take into account the co-infections that go along with Lyme disease, which can cause their own set of symptoms independently.  As a medical community, we need to put politics aside, and start paying more attention to what our patients are telling us.  Of course, you’ll have the occasional patient who swears that everything wrong with them is the result of Lyme, when it’s really not, but let’s not let that ruin for the people who truly are suffering from this disease!

We live in an area where Lyme is endemic, yet the number of healthcare providers who tend to recognize and treat this disease without relying solely on laboratory criteria are few and far between.  If you believe that you’ve been affected by Lyme or related tick-borne infections, don’t let doctors convince you that “everything is normal.”  Seek out a practitioner who has experience with diagnosing and treating this potentially chronic condition, as the sooner you can get help, the better!

Recognizing Lyme Disease and Related Infections

Although we live in a state where Lyme disease is endemic, the diagnosis and treatment of this condition continues to be controversial.  Unfortunately, the political landscape surrounding Lyme disease has steered many doctors away from treating it altogether, putting many patients at risk for developing long-term complications.  It’s not uncommon for me to see patients who have been told that their testing for Lyme disease and other co-infections is negative, so therefore there is no possible way that these infections can be responsible for their symptoms.  This information can be extremely misleading, since the validity of testing is dependent on what stage of the disease they are performed.  Doctors who are well informed about Lyme will typically treat based on clinical criteria (outlined by the CDC), with the argument being that the risk of putting uninfected individuals on antibiotics is not outweighed by the risk of long-term Lyme complications.

Since there is so much variability from one physician to the next, the most important point is for patients to recognize the most common symptoms of Lyme disease and other co-infections, so they can consider seeking out a second opinion if they’ve been told their symptoms are unrelated, yet their health continues to decline.  Symptoms to watch for include the following:

Lyme Disease: Fatigue, headaches, cognitive difficulties, roaming muscle pain that comes and goes, intermittent paresthesias (numbness, tingling).

Babesia: Fever, chills, night sweats, “pressure” headaches, insomnia, “air hunger”, easy bruising.

Ehrlichia: High fevers, low WBC and platelet counts, elevated liver enzymes.

Bartonella: Fatigue, “ice pick” headache, cognitive difficulties, lymph node swelling, pressure behind eyes, seizures, painful feet (especially upon waking), sensitivity to light.

Other key points to consider:

-While known history of a tick bite is helpful, how often will you notice something the size of a poppy seed hanging around?

-Lyme disease can suppress many subsets of your immune system, so recurring viral infections and other signs of immune compromise can be another clue.

-If you do find a tick, don’t throw it away! You should save it, and have the tick tested for Borrelia.

-Exposure history (hiking, wooded areas, occupational hazards, etc.) and previous response to antibiotics (did symptoms improve or worsen) can be useful indicators.

-There are no definitive tests for Lyme disease!

If you’re suspicious of Lyme or related co-infections based on this summary, seek out a physician who has experience with diagnosing and treating these conditions.  Be persistent, and don’t be discouraged by negative test results, particularly if you continue to suffer!

CT Physicians and Chronic Lyme Disease

According to a recent UConn survey, only about 2% of physicians in the state of Connecticut treat chronic Lyme disease, while barely 50% even believe that it exists! This is a travesty for patients who have suffered for months or years without the appropriate treatment, and is largely due to the stances taken by the American College of Rheumatology, Infectious Diseases Society of American, and other organizations that dissuade physicians from treating chronic Lyme. Fortunately, a group of physicians who are aware of chronic Lyme disease, and how to treat it effectively, have formed their own organization (ILADS). 

If you have a history of Lyme disease, or believe you may be suffering from chronic Lyme, please contact ILADS (www.ilads.org) for a physician referral.
For a more in-depth article regarding this recent survey, please visit http://www.medpagetoday.com/InfectiousDisease/GeneralInfectiousDisease/22000