You’ve probably heard of Lyme disease. Perhaps you’ve found a tick on you, or your dog, or your son or daughter. Perhaps it left a bull’s-eye rash and you rushed to your doctor to get tested for the disease. Maybe the test came back positive, you took antibiotics, and now you feel great. Maybe you took the recommended amount of antibiotics, but you don’t feel so great. Or maybe the results were negative, but you still have a lingering suspicion that something is wrong.
As someone who has extensive personal experience with Borrelia burgdorferi, I can tell you that all of the above scenarios are legitimate. However I, like so many others, never found a bull’s-eye rash and was wholly unaware of the signs and symptoms of Lyme for quite some time. In fact, the majority of patients diagnosed with Lyme either did not develop a rash or do not recall seeing one. These patients are much more likely to be misdiagnosed and to develop chronic symptoms.
Growing up, I would go to my primary care doctor and mention ongoing fatigue along with other symptoms. However, since I did not have swollen joints or a rash, Lyme was not a primary suspect and a negative Lyme test seemed to confirm that. It wasn’t until years later when I visited a Lyme disease specialist that I discovered I had not only Lyme, but multiple coinfections associated with tick borne illness. This exact narrative is far too common and rates of infection are only increasing.
The longer Lyme stays untreated, the more likely it is to become a lasting problem. So what even is Lyme disease, and how can you educate yourself on the signs and symptoms? How can you catch it early enough?
1. The Origin Story
Despite several compelling theories regarding its beginnings, there is no proven source of the origin of Lyme disease. However, we do know that symptoms of the disease began appearing in Lyme, Connecticut in the early 1970s. The scientist Willy Burgdorfer was able to link the disease to the deer tick. He found that the bacterium that causes Lyme disease is a spirochete, much like the bacterium Treponema pallidum, which causes syphilis. Shortly after, scientists developed antibiotics to treat infected patients. Presently, there are estimated to be 329,000 new cases each year, though with such poor testing options that number is most likely much higher. Lyme is a worldwide health concern and is now all over the United States. The most common regions of occurrence in the US are the Northeast and Midwest.
2. Signs and Symptoms
Lyme disease has been known to cause an alarmingly wide array of symptoms, which is why it can be difficult to diagnose without a rash. The most obvious sign of infection is the bull’s-eye rash, however there are several other signs that you must look out for in order to catch the disease in a timely manner.
Fatigue. Migratory joint pain and swelling. Flu-like symptoms such as fever, chills, sweating, and achiness. Nausea. Migratory muscle pain and weakness. Various strange skin rashes. Sudden vision changes. Bladder issues. Numbness and tingling in the muscles and limbs. Heart issues, cognitive decline. Headaches, stabbing pains, crawling sensations. Sudden anxiety such as paranoia and OCD. Mood changes.
After prolonged infection, you are likely to see a worsening of the above symptoms, as well as the possible presence of various others. The temporary paralysis of one side of the face, known as Bell’s palsy. Inflammation of the meninges surrounding the brain, known as meningitis. Irregular heartbeat. Severe fatigue. Tremors, balance problems. Depression. Shooting pains in the head, chest, and limbs. Hepatitis. Heart failure. Memory loss, as it is thought to be linked to Alzheimer’s. Symptoms have been known to overlap with the symptoms of MS.
If Lyme goes untreated even for a couple of days, it can enter parts of the body that are very difficult to treat, such as the muscles, the joints, the heart, the eyes, and the brain. Lyme can cause detrimental issues with the central nervous system. It can also be the root of various mental illnesses. The sooner the signs and symptoms are recognized, the better.
3. The Coinfections
As if Lyme itself isn’t bad enough, ticks often transfer various coinfections along with Lyme disease. Some patients will find that they carry several of these coinfections, which can cause additional symptoms (not all infected will be affected). Some antibiotics are more effective at targeting these diseases specifically, whereas others are able to treat coinfections and Lyme simultaneously. The first, Babesia (Babesia microti), infects red blood cells and causes drenching body sweats. The second most prevalent, Bartonella (Bartonella henselae, also known as Cat-Scratch Fever), sometimes presents with red rashes that resemble stretch marks or cat scratches. Patients with Bartonella are more likely to have neurological symptoms. Anaplasmosis, (caused by the bacterium Anaplasma phagocytophilum) can cause anemia, enzyme imbalance in the liver, low white blood cell and platelet count, and in severe cases, organ failure. Additional information on coinfections can be found here.
The test used to treat Lyme is only accurate 27-40% of the time. This is due to the fact that the test is only sensitive to one strain of Lyme when hundreds exist. Additionally, it relies on detecting antibodies which the immune system produces to defend itself from the disease. Antibodies are often not in abundance during the first few weeks of infection, and therefore early tests are often inaccurate. However, there are several reasons why you may receive a false negative, as detailed by this site. Lyme testing is in the process of being improved. The ELISA test is the first test given to Lyme patients, and if results are positive, a Western Blot test is also done. However, if the ELISA is negative, no further action is taken, which is concerning considering the inaccuracy of the exam. ILADS, the International Lyme & Associated Diseases Society, believes that any one diagnostic test result should not overrule the possibility of Lyme Disease due to the science behind these inaccuracies.
While treatment varies from patient to patient, a combination of several antibiotics is the most common method for treating Lyme and coinfections. Borrelia burgdorferi is particularly difficult to eradicate as the spirochete is known to convert into cyst form when it feels it is under attack. When in this form, the bacterium is immune to antibiotics. Once out of the cyst form, the spirochete will continue to replicate. This is why patients will often relapse after treatment. Therefore, some antibiotics will cause symptoms to subside temporarily, but they not will not implement long term relief. Luckily, there are specific antibiotics known as ‘cyst busters’ that can break the barrier the spirochete creates for protection. There are also many holistic forms of treatment for Lyme, which are preferable for those who are concerned about the long term effects of strong antibiotics on the body. This often includes an anti-inflammatory diet.
6. The Debate
Many doctors dispute the fact that Lyme can be chronic. The CDC (Centers for Disease Control and Prevention) does not recognize chronic Lyme disease, but rather Post-Treatment Lyme Disease Syndrome (PTLDS). They argue that patients that receive long term antibiotics for Lyme do not see improvement in their symptoms, and therefore any symptoms that persist after a couple weeks of treatment are due to tissue damage from the spirochetes. Even IDSA, the Infectious Diseases Society of America, rejects the idea of chronic Lyme disease.
However, there are doctors that do recognize the long term infection of Lyme. ILADS consists of physicians who advocate for the existence of chronic Lyme disease. Patients who have been directly affected are able to disprove claims that the disease is always cured in a matter of weeks. While many are lucky enough to be cured when they find the rash and begin strong antibiotics immediately, others find lingering complications years after they thought they had finished treatment. Hundreds of thousands of patients are misdiagnosed or ignored for years, to the point where they are stuck with their late stage Lyme disease symptoms for the rest of their lives.
Deer ticks go through four life stages: egg, larva, nymph, and adult. In their early stages they feed on hosts such as the white footed mouse, which is the primary carrier of Lyme disease. A tick in the nymph stage is no larger than a poppy seed and is very difficult to spot on humans. Even adult ticks only reach the size of a sesame seed. They move quickly over the skin but prefer to stay latched in warm places such as the armpit, groin, or scalp. Ask a friend or family member to check the places you can’t see for yourself and be sure to check your furry friends as well. I’ve pulled several ticks off of my dogs and they can contract Lyme too!
Always check your body for the blood suckers after a hike in tall grasses or wooded areas. Avoiding these areas is the best way to prevent infection, although this a difficult feat if you love the outdoors. For further protection, wear long pants tucked into your socks and sleeves to cover up. This will prevent accessibility to most of your skin. Bug spray also helps.
Use tweezers to remove the tick as close to the skin as possible and clean the area of the bite with soap and water. Keep the tick if possible and bring it with you to the doctor to be sent out for testing.
I highly encourage you to continue to research and educate yourself about Lyme. I assure you that it is a fascinating topic sure to spark debate and make many headlines in the future! And if you believe you exhibit any of the above signs or symptoms, seek the appropriate medical attention. You’ll thank yourself later!