all about lyme
In 2018, I joined a community of Lyme warriors who are fighting for a cure as well as greater awareness for a disease that has drastically reduced our quality of life. Lyme disease is complicated and difficult to describe so I’m always touched when friends and family admit they don’t really understand what it is and want to learn more about it.
It has taken me months and several books to comprehend what was (is) truly happening to my body. My hope is that this blog will serve as an informative platform about the source and symptoms of Lyme disease, helping shed light on this growing epidemic that demands attention, funding for research and treatment options, and more Lyme-literate physicians.
Lyme disease has become the fastest-growing insect-borne infectious disease in the United States, Europe and Asia. In the United States alone, almost 400,000 people are diagnosed each year with Lyme disease and countless others go undiagnosed, unreported and untreated.
While ticks transported by deer are the most common carriers of Lyme, other insects ( mosquitoes, fleas or flies) and small animals (mice, rats, rabbits, squirrels) also contribute to the spread of Lyme disease.
The disease was first discovered in 1975 near Lyme, Connecticut when children started experiencing rheumatoid arthritis. Some saw an improvement in symptoms after being treated with antibiotics, implying that an unknown bacteria had caused this rare form of arthritis.
It wasn’t until the early 1980’s that microbiologist and expert in Rocky Mountain spotted fever, Dr. Will Burgodrfer, discovered spirochetes – flexible, spiral shaped bacteria – in both the ticks that he tested and the children infected with Lyme disease. In honor of the doctor’s discovery, the bacteria was named borrelia burgorferi. Once scientists started to discover that the bacteria caused symptoms other than just arthritis, borrelia was eventually renamed Lyme disease.
Interestingly, the oldest known person to be infected with borrelia, is “Otzi the Iceman,” a 5,300 year old mummy found on the Austrian Alps (History on Fire has an incredible podcast all about Otzi – even after 5,300 years, scientists can determine his movements through different mountain elevations, that he died in Spring or early summer, and ate two hours before his death following a fatal fight!)
Because Lyme is a complicated disease, I’d like to address some misconceptions by providing the following facts:
Many people do not exhibit the classic “bull’s eye rash and flu-like symptoms” which are the early indicators of Lyme.
Some people may have the dormant bacteria for years without knowing it (I’m guessing this was what happened in my case).
Lyme manifests differently in each infected individual and is often misdiagnosed as another autoimmune disease (i.e. multiple sclerosis, fibromyalgia, depression, arthritis, lupus, chronic fatigue syndrome, etc.).
The borrelia organism morphs to hide from the immune system, making treatment a shot in the dark.
Doctors and healthcare providers lack Lyme awareness, especially in areas of the world where it is uncommon.
Accurate testing is incredibly erroneous and diagnosis is often confirmed by reported symptoms. For example, I was tested three times but only tested positive on two out of the three tests.
There is no one successful treatment for everyone with Lyme disease.
Given the above, finding an accurate (and timely) diagnosis, as well as a functional treatment plan, is incredibly difficult. You can read more about my own journey to a Lyme diagnosis on this blog post.
Due to the nature of the Lyme spirochete, treating Lyme is very challenging. Let me explain why:
Lyme spirochetes are surprisingly adept at hiding from the body’s immune system.
Upon piercing the skin, the Lyme bacteria is immediately coated with its own saliva, creating a protective shield that essentially makes it invisible to the human body’s immune system. It may take weeks or years for the body’s immune system to recognize the Lyme bacteria and start producing antibodies to attack it. This is why some people who are tested immediately after a bite often test negative.
The spiral form of the Lyme spirochete allows it to easily move through the body.
The Lyme spirochete is also elusive due to the bacteria’s flagella (wispy and slender appendages) that allow it to easily move through the human body’s tissues. The Lyme spirochete is one of the only bacterias that can change its shape to hide from the body’s immune system and become more resilient to antibiotics!
A shape-shifting spirochete means that the body’s immune system is constantly struggling to keep up the antibody fight.
As a shape-shifting invader, the immune system is fighting an uphill battle – as soon as the spirochete changes shapes, the immune system has to adapt and find a different way to defeat it. Hence, antibodies that might have been effective at the onset of the infection become ineffective as the spirochetes invade another part of the body causing an onset of additional symptoms.
The Lyme spirochete can lay dormant inside the body.
During this dormant period, the Lyme spirochete is less vulnerable to antibody attacks. Once the spirochetes realize antibodies are attaching them, they go into hiding by coiling themselves into balls so that the immune system is unable to detect them. They can even manifest in scar tissue – which is impenetrable by the immune system.
In early Lyme disease, antibiotics may kill the Lyme spirochetes before the immune system has a chance to respond and rally the antibody troops. But in chronic Lyme disease, the activation of the immune system itself causes the symptoms. With any autoimmune disorder, the body starts to attack its own tissues, wrongly believing that the tissues are invasive and need to be defeated.
I’m predicting that one day, checking for ticks after being outside will be as routine as brushing your teeth. However, with or without a visible bite and red bull’s eye rash, it’s imperative to understand and identify the symptoms of acute Lyme disease, a phase that usually occurs between three to thirty days after a bite. Treatment for acute Lyme is pretty simple and usually responds to antibiotics, but left untreated it can morph into chronic or late-stage Lyme which can reap long-term havoc on the body’s systems. In The Lyme Solution: A 5 Part Plan to Fight the Inflammatory Autoimmune Response and Beat Lyme Disease, Dr. Darin Engles, ND FAAEM, describes symptoms of acute and chronic Lyme as follows:
Symptoms of late-stage or chronic Lyme disease:
Persistent fatigue and exhaustion
Arthritis with severe join pain and swelling in the knees and other large joints
Pain in tendons, muscles, joints and bones, intermittently
“Wandering” pains from location to location
Irregular heartbeat (Lyme carditis) or palpitations
Dizziness or shortness of breath
Inflammation of the brain and spinal cord
Shooting pains, numbness, tingling or burning sensations in the hands or feet
Problems with short term memories
Symptoms of acute Lyme disease:
Pounding, irregular headaches
Abnormal and persistent fatigue
Numbness and tingling
Muscle and joint aches
Swollen lymph nodes
Bell’s palsy (loss of muscle tone, or drooping on one or both sides of the face)
A bull’s eye rash
Individuals with late-stage Lyme will generally experience at least three of the above listed symptoms. In these cases, antibiotics can be administered for months at a time but may leave the immune system too compromised to fight the next wave of Lyme symptoms. It’s a fine line in determining whether the potential benefits of antibiotics (e.g. the slim chance of successfully attacking the spirochetes) outweigh the damage inflicted upon the immune system and gut flora.
I hope this helps to serve as an introduction to Lyme disease. If you have any questions, please feel free to reach out. While I’m no doctor or expert, I’ll do my best the answer your questions!