In a recent nationwide survey of people with Lyme disease, over 61 percent reported it took over two years to get a correct diagnosis. The Lyme disease misdiagnosis of patients can be costly for the healthcare industry and the person suffering from negative symptoms.
If a patient is misdiagnosed, they have likely been diagnosed with something else, and they may have been treated for a disorder they did not even have. This can be devastating for the patient working with a doctor that doesn’t know much about Lyme disease. They can be made to feel like they imagined their ailments.
The longer a patient goes without the right diagnosis, the better the chances of developing chronic Lyme disease.
So, how does the misdiagnosis of Lyme disease happen?
There are two main Lyme disease tests used by most practitioners in the United States today. The ELISA, or the enzyme-linked immunosorbent assay, and the Western Blot test. Both tests used together still do not make them very accurate. However, they are more reliable than not being tested at all.
The reason the tests are inaccurate over 40% of the time is that they only test to see if the antibodies in your blood react to antigens or parts of the bacteria that causes Lyme.
The problem is that Lyme disease antibodies are smart. They can go into hiding at times and mask themselves from antigens they see as a threat.
For you to test positive for Lyme disease using these tests, your blood must show the bacteria’s presence at the same time the test is given. This only happens a little over half the time.
Unfortunately, most family doctors see the negative result and stop there, convinced you don’t have Lyme disease. This leads to another reason for misdiagnosis.
Working with a Lyme disease doctor can help you get further testing.
When you visit your family doctor and present them with your symptoms, your doctor listens. Without doing much testing, your doctor may diagnose you and put you on a treatment plan. This treatment plan is more of a process of elimination rather than an accurate diagnosis.
For example, if you tell your doctor you feel pain in your joints, they may prescribe pain medication or treat you for arthritis. If you tell your doctor you have been feeling depressed for no reason, they will most likely prescribe you an anti-depressant.
The problem? Your Lyme disease symptoms will persist. This is why you must receive treatment from doctors who are specialists in Lyme disease. They are the doctors who understand how Lyme disease mimics other disorders like the following:
- Chronic Fatigue Syndrome
- Crohn’s disease
- Early Alzheimer’s disease
- Gastroesophageal Reflux Disease
- Irritable Bowel Syndrome
- Ménières Syndrome
- Multiple Sclerosis
- Psychiatric disorders
- Rheumatoid Arthritis
- Sleep disturbances
- Thyroid disease
Doctors need the most information you can give them to make the right diagnosis.
Doctors are not mind readers. They don’t know that you had flu-like symptoms last week, or a month ago, you couldn’t walk because of the pain in your back. They need a record of your symptoms. The only way they can get this is through you.
You must first know the symptoms of Lyme. Symptoms can include any, some, or all the following:
Cough, shortness of breath, fevers, chills, sweats, fatigue, chest pain, heart palpitations, blurred vision, hair loss, difficulty swallowing, swollen glands, sore throat, weight changes, ringing in the ear, nausea, digestive problems, tremors, bells palsy or facial twitches, joint pain, inflammation, cramps, stiffness, neck cracking, muscle pains, sleep problems, TMJ, tingling or numbness, poor balance, and mood swings.
Then, you must provide accurate, detailed information to your physician to get the right diagnosis.
If you found a tick on your body, document it somewhere, even if you don’t feel you are at risk for Lyme disease. Three months from the time you found the tick, you may start having headaches, pain, a fever, or anxiety that may seem to arrive out of the blue. But if you have documented you found a tick on you; your doctor may associate that with your symptoms.
When documenting your symptoms, include the date and anything else that is going on at the same time. For instance, if you have a headache when your in-laws visit, that may just be related to your in-laws and not Lyme disease. But if you have headaches during your average routine days, it may be something more serious.
Lyme disease is a bacterial infection. Often, Lyme disease can be accompanied by other bacterial infections. Deer ticks that carry Lyme can also carry other bacteria like Babesia. Your blood may test positive for a bacterial infection. Your doctor treats you with antibiotics, and the bacteria is eliminated from your blood.
However, what can happen is that while one bacterium is eliminated, Lyme disease can still linger in your system. Lyme can go dormant for periods. If it is inactive during your testing and treatment, it may remain in your system. Therefore, you will be misdiagnosed.
How To Find The Right Doctor
Finding the doctor who can accurately determine if you have Lyme disease can be difficult, especially if traveling to a certified specialist is impossible. Today, however, many Lyme disease doctors can meet with you online for a consultation.
When interviewing a doctor, you should ask basic questions about Lyme disease, which you already have the answers. If the doctor can answer your questions correctly, they can move to the next round of your interviewing process.
Specialists will agree that the testing available is not where a diagnosis should stop. Lyme specialists will have additional testing methods and modern, advanced treatments they can perform, like apheresis, to help eliminate Lyme from your system.
Because Lyme can be life-altering, you want to put in the effort to find the right doctor to avoid receiving a Lyme disease misdiagnosis.