Sometimes the Diagnosis is Half the Battle

It is universally agreed upon that the sooner a diagnosis can be made from the time of the initial infection with Lyme disease, the better the chance of recovery. Accurately diagnosing the disease is not always an easy task since it manifests itself in a variety of ways. Research done by the International Lyme and Associated Diseases Society (ILADS) indicates that only 50-60% of patients recall a tick bite. Deer ticks are tiny and not easy to spot even when they are attached to you, and their bites are painless. The only distinctive sign unique to Lyme disease, the Erythema Migrans (EM) rash, which looks like a bullseye, is reported in only 35-60% of patients. Joint swelling typically, occurs in only 20-30% of patients. ILADS also state that given the prevalent use of over-the-counter anti-inflammatory medications such as Ibuprofen, the joint inflammation is often masked. 

The Lyme disease bacterium is difficult to find in laboratory tests of body tissues or fluids, therefore most health care providers look for evidence of antibodies against B. burgdorferi in the blood to confirm the bacterium’s role as the cause of symptoms. Take a look at some facts from various websites about Lyme disease testing:

• In the first few weeks following infection, antibody tests are not reliable because your immune system has not produced enough antibodies to be detected.
• Antibiotics given early during infection also may prevent antibodies from reaching detectable levels, even though Lyme disease bacteria are causing your symptoms.
• It may take up to 2 months after becoming infected before antibodies can be detected in a blood test. Once formed, antibodies usually stay in your system for many years, even after successful treatment of the disease. Finding antibodies to the Lyme disease bacteria does not tell whether you were infected recently or sometime in the past.
•  We have no way of proving that Lyme disease has been fully treated. Antibody tests can remain positive for many months after the organisms have been eradicated. Clinical symptoms may persist because the bacteria live in the small blood vessels that supply nerves and other tissues. If those blood vessels are blocked by the inflammation, patients can continue to experience symptoms long after the last organism has died.
• "The commercial testing that's available is, in a word, terrible. It has coin toss sensitivity, which means if you flip a coin you get the same results as doing a commercial test," says Dr. Raphael Stricker, former ILADS president, who treats Lyme patients at his clinic in San Francisco.

The two most popular tests used to detect Lyme infections; Western Blot analysis and Enzyme-linked immunosorbent assay (ELISA) both test for antibodies and are notoriously inaccurate. They often fail to indicate Lyme when it is present in the body, with up to one third of cases of the infection being missed due to a high rate of “false negative” results. Patients can take a Lyme disease test one week and get a positive result, and take the same test two weeks later and result in a negative. The confusion is due to the nature of the Lyme bacteria, which is highly adaptive and bent on survival within a threatening environment. If a person does not have a diagnosed EM rash, there is a good possibility that the Lyme diagnosis could be missed. Consequently, those patients can become chronically ill with Lyme disease.

This muddled picture has one more layer; co-infections. In my last post I mentioned that there are more than a dozen tick borne diseases recognized in the United States. The standard Lyme disease tests only look for evidence of antibodies against B. burgdorferi. The tests for other tick borne illnesses must specifically be requested by a physician based upon the symptoms their patients are exhibiting. 

In my last two posts, I took a step back from my personal experience and laid out facts that anybody doing a search about Lyme disease, co-infections and testing could come across. As you can see, there is a lot of controversy surrounding Lyme disease and treatment. In an earlier post titled “A Clean Bill of Health” I was told I was healthy since my tests came back negative, even though I was 100% sure I had Lyme disease (again) and had text book symptoms. No further blood work was ordered and I couldn’t even get the physician to call me back for further discussion. I had to seek out a Lyme literate doctor (LLMD) in order to move forward and get treated. Talk about opening up another can of controversy. More on that next time!