For the last several years, Pennsylvania has had the notorious distinction of leading the nation in cases of Lyme disease. In 2016, the CDC reported more than 12,000 cases–one-third of the total in the entire United States.
One of the biggest controversies regarding Lyme disease is a condition sometimes referred to as chronic Lyme disease. More appropriately called post-treatment Lyme disease syndrome (PTLDS), it consists of symptoms that persist after appropriate treatment of acute Lyme disease. Common complaints include fatigue, joint and muscle aches, and memory difficulties. There is ongoing debate over whether PTLDS actually exists and more importantly, how to treat it.
Dr. John Flaherty, an infectious disease expert at Northwestern University Feinberg School of Medicine, says emphatically that people are suffering with PTLDS and he has patients who have felt better with treatment. Treatment usually involves weeks or months of IV and/or oral antibiotics. However, four large randomized controlled trials did not show a benefit from antibiotic treatment compared to placebo, and long-term antibiotic use poses real risks.
Risks of Prolonged Antibiotic Use
The antibiotic tetracycline is known to inhibit chemicals linked to inflammation. Ceftriaxone, another antibiotic used to treat Lyme, affects glutamate levels in the brain related to pain perception.
In addition, we are constantly reminded that unnecessary antibiotic use will select out resistant strains of bacteria and can make future infections more difficult or impossible to treat. Antibiotic use is also causing a growing epidemic of a serious bowel infection called Clostridium difficile (C.diff) which causes 29,000 deaths per year.
Other Treatment Options for PTLDS
So, if antibiotics are not the answer, what are people with PTLDS to do? Unfortunately, there is little written on the subject. This can be a very challenging journey to say the least. However, suggested treatment is similar to that of chronic fatigue syndrome, and includes:
- Gradual implementation of mild to moderate exercise
- Good nutrition with plenty of fresh vegetables and fruits
- Proper rest
- Stress management
- Smoking cessation
- Treatment of other underlying chronic illness, including depression
If you are experiencing prolonged symptoms of Lyme disease, talk to your doctor about the best options for you.