8 Symptoms Of Post-Treatment Lyme Disease That Are Easy To Miss
Getting Lyme disease is never fun, but the tick-bite induced red, bulls-eye shaped rash and flu-like symptoms tend to resolve after a course of antibiotics. However, some Lyme patients who are treated don't see a reduction in all of the their symptoms, and it's so common it even has its own name. Subtle signs of post-treatment Lyme disease, also known as post-treatment Lyme disease syndrome or PTLDS, include fatigue, pain, insomnia, and depression, according to a study published in the journal Frontiers in Medicine. What's more, these symptoms can persist long after the disease has left the body, sometimes for as long as a decade.
"Although physical exam and clinical laboratory tests showed few objective abnormalities, standardized symptom questionnaires revealed that patients with PTLDS are highly and clinically significantly symptomatic, with poor health-related quality of life," the study reported. "PTLDS patients exhibited levels of fatigue, musculoskeletal pain, sleep disturbance, and depression."
Like other chronic conditions that are poorly understood, living with post-treatment Lyme disease can be both physically and mentally exhausting, on top of being incredibly frustrating. If you've had Lyme disease, been successfully treated, and you're still experiencing symptoms, these are the subtle signs of post-treatment Lyme disease to watch for.
1. Extreme Fatigue
Because the symptoms of PTLDS are similar to myriad other conditions, such as chronic fatigue syndrome and fibromyalgia, it can be difficult to diagnose. Extreme, unexplained fatigue in people who've been previously treated for Lyme disease is one of the first signs of PTLDS, according to the CDC. If you have had Lyme disease, find a doctor who will listen to you so you can start feeling better.
2. Joint Pain Or Arthritis
If you start experiencing joint pain or symptoms of arthritis after you've completed treatment for Lyme disease, it could be PTLDS. While it's rare for people in their 20s and 30s to develop suddenly arthritis, WebMD reported that at least half of people with Lyme disease get some form of arthritis. "Often the pain and joint stiffness can be felt all over, but sometimes it’s just in certain joints, like the knees. It usually goes away, but in some people, the arthritis may continue."
If you never got headaches before your Lyme diagnosis, and post treatment you're getting them on the regular, ask your doctor if it could be PTLDS.
4. Brain Fog
If you do have undiagnosed PTLDS, and your headaches are accompanied by brain fog — the inability to concentrate and remember things — PTLDS might be to blame. Because brain fog is a symptom of a lot of chronic conditions, if you have it along with other PTLDS symptoms, talk to your doctor ASAP.
5. Numbness Or Tingling
While numbness and tingling in the arms and legs is a symptom of some autoimmune diseases, it's also a symptom of PTLDS, according to a study from Johns Hopkins University School of Medicine. If you experience this along with any of the above symptoms, and you have been treated for Lyme, ask you doctor if you could have PTLDS.
6. Sleep Disturbances
According to the study published in Frontiers in Medicine, 31 percent of PTLDS sufferers reported severe sleep disturbance issues, which contributes to persistent fatigue. "These symptoms are more severe than what the average non-PTLDS patient is experiencing even on a bad day," study co-author Kathleen Bechtold, Ph.D., associate professor of physical medicine and rehabilitation at the Johns Hopkins University School of Medicine, said in press release.
7. Anxiety & Depression
If you didn't have any symptoms of anxiety or depression before your Lyme diagnosis, and you still feel sick despite being treated, Lyme Basics notes that the stress of dealing with PTLDS can contribute to anxiety and depression in people without previous mental health issues, which is what happened to Brandi Dean.
8. You Have These Symptoms After Being Treated For Lyme Disease
If you develop several of the above symptoms after being treated for Lyme disease, PTLDS could be the culprit. "Post-treatment Lyme disease syndrome is a real disorder that causes severe symptoms in the absence of clinically detectable infection," John N. Aucott, M.D., associate professor of medicine at the Johns Hopkins University School of Medicine and director of the Johns Hopkins Lyme Disease Clinical Research Center, said in a press release about the study.
The bottom line? 10 to 20 percent of people who are treated for Lyme disease, and no longer have it present in their bodies, reportedly develop PTLDS, according to Pinnacle Care. If your doctor won't listen to you, find one that will. Treatments differ depending on your symptoms, and researchers are still in the process of developing new treatment methods. However, getting the proper diagnosis is the first step toward making a full recovery.