Healthy Living

What to Expect on Your Future Visits to the Doctor After You Have Been Diagnosed with Lyme Disease

What to Expect on Your Future Visits to the Doctor After You Have Been Diagnosed with Lyme Disease

Key Takeaways

  • Doxycycline, amoxicillin, and cefuroxime axetil are some of the antibiotics most commonly used to treat Lyme disease.
  • The most common and reliable test for checking on the level of antibodies to B. burgdorferi (the bacteria responsible for Lyme disease) in your body is the ELISA test, which may be supplemented by the Western blot test.
  • Post-Treatment Lyme Disease Syndrome (PTLDS), also known as chronic Lyme disease, occurs in about 15 percent of Lyme disease cases. A person suffering from PTLDS continues to experience the symptoms of Lyme disease for more than 6 months. 

A diagnosis of Lyme disease immediately calls for a 2-4 week course of antibiotics. Doxycycline, amoxicillin, and cefuroxime axetil are some of the antibiotics most commonly used to treat Lyme disease. However, treatment may still vary depending on the symptoms present and the stage at which the disease was diagnosed. In its advanced stages, the disease may not be that simple to treat. 

Why is it important to take my antibiotics as prescribed?

Non- or unsuccessful treatment of Lyme disease can cause some grave complications. The bacterium initially infects the skin, but if left untreated, the infection spreads throughout your body and up to your brain and can cause meningitis, neurologic dysfunction like paralysis, and heart rhythm irregularities. Other types of bacterial infections carry no risk of arthritis, but untreated Lyme disease does--there are chances of complications like arthritis and swelling of the joints. 

So I've been given antibiotics. That's all there is to it. Right?

Not quite. Your doctor will have you come back for him to see how your body is responding to the antibiotic treatment. Your doctor may require a blood test or two. 

Blood Tests!

On visits to your doctor after your having been diagnosed, he may require you to undergo blood tests to check on the level of antibodies to B. burgdorferi (the bacteria responsible for Lyme disease) in your body. The most common and reliable test for this is the ELISA test, which may be supplemented by the Western blot test. In most cases, the disease responds to antibiotics.  

Nonetheless, your doctor may require the same blood tests after you have completed your course of antibiotics to check on how your body is doing. Actually, it is highly likely that your blood test results will be positive in the weeks, months, or even years after your having gotten treatment for the disease. It would not mean, however, that you still have the bacteria in your body or that you are still sick. That your body will still be producing the antibodies for some time following treatment is normal--it happens with other diseases too. Note, however, that in the case of Lyme disease, the presence of antibodies after treatment does not make you immune to the disease. If you are bitten once more by an infected tick, you can get sick again. 

If the antibiotics have killed all the bacteria, why do I need more blood tests?

The doctor's purpose for the blood tests is that a very high level of antibodies to B. Burgdorferi post-treatment can indicate that you have Post-Treatment Lyme Disease Syndrome (PTLDS), also known as chronic Lyme disease, which occurs in about 15 percent of Lyme disease cases. While it is common for the fatigue, muscle aches, and joint pain of Lyme disease to still be felt at the time the antibiotics treatment is completed, a person suffering from PTLDS continues to experience the symptoms for more than 6 months. 

The symptoms of PTLDS include:

  • Fatigue
  • Restlessness and poor quality sleep
  • Body pains
  • Muscle and joint pains
  • Pain and swelling in large joints such as the knees
  • Poor concentration and poor memory
  • Speech problems

Not every doctor knows much about PTLDS, as it is still very poorly understood and quite complex. What causes the symptoms of Lyme disease to linger is still unknown, so it is important that you see a Lyme Literate Medical Doctor (LLMD), who uses conventional medicine to help alleviate your symptoms, or you might opt for a Lyme Literate Naturopathic Doctor (LLND), who uses naturopathic protocols in managing your condition. Or you might wish to look for a doctor who uses a hybrid approach. If your blood test confirms that you have PTLDS, there is little that can be done to cure it instantly. What a doctor knowledgeable in chronic Lyme disease can do, though, is prescribe treatments and therapies for the symptoms and help you achieve remission.  

Regardless of which doctor you have chosen, it is best to prepare yourself before the appointment. 

Given the relative rarity of LLMDs and LLNDs, it may take a few weeks before you can see one. While waiting, there is much you can do. Here are a few things you need to prepare before the appointment: 

1. Assemble copies of the results of your blood tests

You should be ready to bring copies of the results of all the blood tests that have been done so far from the earliest manifestation of Lyme disease. Doctors do not necessarily perceive reports in a similar way. What appears to be an issue for one doctor is discarded by another. Your doctor may call for a new test based on his investigation of the previous reports.

2. Write down all your past and present symptoms 

No matter how strange the symptoms, no one can remember all of them since the disease is a prolonged one. Each symptom is an indication of the cause of Lyme disease. Elaborate on each symptom's intensity, frequency, and effects.

3. List all the medicines, vitamins, and supplements you are taking; include the dosage you take of each

Certain medications and herbs do not interact well with each other in the body. The doctor should be aware of all the medicines, vitamins, supplements, and herbs you have been taking, including how much of each you take and how often. Be ready to bring the list with you.

4. Write down all the questions you have and can think of 

Prepare your questions to make your time with the doctor as informative and helpful to you as possible. Ask all the questions you have listed, as well as those that might come up during the appointment. Ask about the illness, the treatments, the medicines the doctor prescribes you, whether you have to make changes in your diet--any question that concerns you is important. 

A Final Note

Antibiotics for Post-Treatment Lyme Disease Syndrome

Some doctors give patients antibiotics for an extended period of time with the hope that this will treat the disease completely. But there really is no reliable evidence yet that this is necessary or provides any help. In many cases, prolonged antibiotic therapy actually causes the patient more harm than good.