How to get your doctor to test you for Lyme disease.
There are many reasons to ask your doctor to test you for Lyme disease. Maybe you think you've been exposed to the disease, perhaps from a tick bite. Maybe you feel sick after being exposed to ticks or other Lyme disease carriers, for instance, when hiking or camping. Or perhaps you are experiencing what might be symptoms of late Lyme disease, such as joint pain and nervous system problems.
You might find that it's sometimes difficult to convince doctors to order the Lyme test, especially if your case does not follow the usual exposure-rash sequence. Perhaps they don't realize the variety of Lyme's manifestations. Maybe they think that you have something other than Lyme disease (since Lyme can imitate many other conditions). Maybe they don't think Lyme disease is prevalent in your area.
Whatever the response you get, it's important to get tested for Lyme disease if you think there's a chance that you have it. A negative test result won't tell you much (see my hub on Why you can test negative for Lyme even if you have it), but a positive result could help you to obtain the treatment you need.
How to Explain Why You Want to be Tested
1) Lyme disease is present in every state in the United States. It's also present in parts of Europe. Your doctor can't use the excuse, "We don't have Lyme disease here."
The Lyme bacterium has been found in ticks in every state of the country, Dr. Susan Little reported at the 2008 North American Veterinary Conference. Lyme disease was reported in 46 out of 50 states during 1992-2006, according to CDC Surveillance for Lyme Disease, which is probably an underestimate given the spread of Lyme in the past two years and the strict standards for what constitutes Lyme disease for epidemic surveillance.
Moreover, even if you live in a part of the country with low rates of Lyme disease, chances are that you - or your pets - have traveled somewhere with more Lyme exposure within the past years or decades. Even if the exposure was long ago, it could be responsible for your symptoms, since it can take a while for the disease to manifest or for you to realize that it might have Lyme disease. Personally, I probably contracted Lyme disease during a trip to Connecticut, so I am an example of contracting Lyme disease in an area other than where you live.
2) Lyme disease is called "The Great Imitator" because it can manifest as many different symptoms. (See my upcoming post on the variety of symptoms of Lyme disease.) Even if your doctor thinks you have something other than Lyme disease, Lyme disease might be imitating that other condition. If you have several of these symptoms in a pattern that is unusual for you (i.e. not your normal aches and pains), it's a good idea to get tested for Lyme disease.
3) Even if you never recall a tick bite or bulls-eye rash, you could still have Lyme disease. According to the International Lyme and Associated Diseases Society, fewer than half of Lyme patients recall a tick bite, and fewer than half recall a rash.
4) If you do have an identified bulls-eye rash (Erythema migrans), then you have Lyme disease. The EM rash, as it is called, is pathognomonic of Lyme disease, meaning that it is diagnostic for that disease. If you have the bulls-eye rash, you should go ahead and get tested for Lyme to try to obtain that very helpful positive test result. However, even before your test results come in, your doctor should start you on antibiotic therapy. Even if your test is negative, an identified EM rash should make you confident that you have indeed contracted Lyme disease.
5) Remind your doctor that it can't hurt to check. Lyme disease becomes harder to treat the longer it goes untreated. Better to find it early, if you have it.
6) In my experience, I have found that nurse practitioners (NPs) are sometimes more willing to listen to my concerns and order tests that I think I should have done. If your doctor won't test you for Lyme, consider seeing a different doctor or a nurse practitioner, who might be more willing to order the test.
The Different Lyme Disease Tests
1) Lyme ELISA or IFA. Measures your antibody response to Lyme bacterium (IgM and/or IgG, different types of antibodies. IgM antibodies are formed as a first response to an infection).
2) Westerm blot. More sensitive. Shows exactly which antibodies you are producing. The IGeneX (a lab test company) version of this test is good. If you have Medicare or Medicaid, you might be able to get the IGeneX test covered by your insurance. (see: http://www.igenex.com/billing.htm).
3) Lyme Dot Blot Assay (LDA). Looks for pieces of Lyme bacteria in urine. Can be helpful for patients with Lyme symptoms who consistently test negative in the other two tests.
4) Polymerase Chain Reaction (PCR). Looks for Lyme DNA.
Your doctor probably will try the first or second tests first. He or she might mention that you can be positive for Lyme disease antibodies even if you had Lyme and got over it long ago, which is true, but nonetheless your results should be interpreted in light of your current symptoms.
If you have a Western blot test done, ask for the information about exactly which "bands" showed up in the test. Your bands might show a positive result for Lyme even if the lab doesn't list it as a positive result according to CDC Lyme reporting criteria.
If Your Doctor Orders the Test
Make sure your doctor (or other healthcare provider) understands that you are doing the test in an attempt to obtain a positive result, rather than to rule out Lyme disease. Since people can test negative for Lyme disease even when they have it (see my hub on Why You Can Have Lyme Disease Even If You Test Negative), a negative Lyme disease test, especially a first-line one, should never be used to "rule out" Lyme disease.
Ultimately, many Lyme disease diagnoses are based on clinical symptoms or responses to treatment (i.e. patient responds well to Lyme disease treatment).
When to Take the Test(s)
1) If you are planning to start taking antibiotics, try to take the test beforehand. Once you start antibiotics, you might have less of a measurable immune response to Lyme disease (which is what the Western blot and ELISA tests measure).
2) If you have a bulls-eye rash, take the test as soon as possible, and start the on antibiotic treatment prescribed by your health practitioner.
3) If you previously tested negative, think about getting tested again 3-6 or more weeks after likely exposure, since it can take a few weeks for the body to mount a measurable level of antibodies.
If You Get a Positive Test Result
1) Celebrate! In our test-obsessed medical system, a positive test result means a lot. Although antibodies alone do not constitute a diagnosis, the combination of your symptoms, exposure, and test result might do so.
2) Frame the result and put it on your wall. (Lyme patients joke about doing this.)
3) Make sure that you send copies of your results to any subsequent doctors that you see for Lyme-related concerns.
4) Consider that you might have additional tick- or insect-borne infections (see my post on Lyme coinfections, as they are called).
If You Get a Negative Test Result
1) Think about trying the test again later. If you were tested in the first few weeks after possibly contracting Lyme, you might become positive in a few more weeks when your body starts making more antibodies. Alternately, if you have had Lyme disease for a while, your immune system might be suppressed, and you might obtain a positive test result only after treating the Lyme to the point that your immune response kicks in again.
2) Consider finding a Lyme-literate doctor (LLMD or LLND, if he or she is a naturopathic doctor). He or she might have you tested by IGeneX, Inc., which performs state-of-the-art tests for Lyme disease, or with a PCR test or LDA test (see above), which can detect Lyme disease in people who test negative for Lyme antibodies.
3) Remember that you still could have Lyme disease despite a negative result, and keep looking for answers. Although you might realize that your symptoms are more indicative of something other than Lyme, it's better to be safe than sorry with this intractable disease.
4) Many tick-borne infections have symptoms similar to those of Lyme disease. Read up on the symptoms of the other tick-borne infections (such as Bartonella, Babesia, Ehrlichia, STARI, and Rocky Mountain Spotted Fever) and consider whether you might have one of these infections.
It's unfortunate if you are having symptoms that suggest Lyme disease. I encourage you to keep trying to discern what's causing your symptoms (and there might be more than one answer).
You have much more knowledge of your own body than a doctor ever could, since you've lived in your body for your whole lifetime while your doctor has not. Thus, if something seems wrong to you, keep looking until you figure out what's going on and what you can do about it. Good luck!