Lyme Disease: Medical myopia and the hidden global pandemic by Dr Bernard Raxlen and Allie Cashel, Hammersmith Books, £15.99, 31st July 2019
Lyme Disease
I grew up in a small town, about an hour north of New York City, smack-bang in the middle of one of the most endemic areas for Lyme disease in the world. Because of the high numbers of diagnoses, people warned each other about Lyme disease all the time. They would remind kids to check for ticks after playing outside. They would replace their tick-repellent dog collars every spring. But even though the community knew about Lyme, few people knew the scope and scale of the disease. “Easy to diagnose and simple to treat,” one doctor once told me. “As long as you get the medicine in you, you’ll be fine.” Unfortunately, this is not the case.
Lyme disease is the fastest growing vector-borne disease in the United States, and is quickly spreading throughout the UK, Europe, and around the world. I am a contributor to Dr Bernard Raxlen’s upcoming book, Lyme Disease: Medical Myopia and the Hidden Epidemic, which works to dispel many of the myths and misconceptions that often surround this disease. Here are ten things you probably didn’t know about Lyme disease.
You know the infamous bulls-eye rash that signals Lyme disease? Not everyone gets it.
“Though the infection is spreading at unprecedented rates,” says Dr. Raxlen, “the disease can be hard to spot. Its telltale bulls-eye rash only appears 25%-30% of the time.” Though most people are told to look for the bulls-eye rash, as a sign of infection, the vast majority of infected patients will never display the rash.
Testing for Lyme disease is unreliable.
Most doctors rely on a blood test to diagnose Lyme and many other infectious disease. But the testing for Lyme disease is unreliable at best. “The laboratory results for Lyme disease can be unreliable and misleading,” writes Dr. Raxlen. “In 30-40% of cases, the procedures are positive and can help to identify the infection. But in the other 60-70% of cases, especially in long standing untreated patients, the laboratory diagnosis may be missed. The reason is that the standard blood test can produce false negative results. With our current tests, even blood samples from the same patient that are sent to different labs for validation, show strikingly different results.”
Even with early intervention some patients go on to experience chronic symptoms of the disease.
I share my own story with chronic Lyme disease in the book, and it’s a story that has now spanned two decades. 10-20% of patients infected with Lyme disease go on to experience chronic symptoms of the disease, even if it’s caught early. Lyme can also cause serious emotional, cognitive and psychiatric problems in more than 40% of infected patients. These symptoms can include anxiety, serious depression, intrusive thoughts OCD, suicidal ideation and depersonalisation.
It’s not just Lyme.
Ticks are not just carrying Lyme disease. Other tick-borne diseases like Babesia, Bartonella, Ehrlichiosis, and even some deadly viruses can also be spread with the bite of a single tick.
Your pets can bring Lyme disease into the house.
“Because of their consistent contact with their owners in domestic spaces, pets are highly suspicious tick carriers.” Dr. Raxlen writes. “Dogs and cats that spend time outdoors and indoors, lying on sofas, beds and rugs, should be considered highly suspect. If they have had tick-borne disease, diagnosed by the veterinarian, then the chances greatly increase that the human patient has had exposure to an infected tick.”
Lyme and tick-borne disease can be a life-altering diagnosis.
Many patients who are diagnosed with Lyme disease, especially those who experience chronic symptoms of the disease, experience Lyme not as a bad flu, but as a life altering diagnosis. According to a study by the New England Journal of Medicine, these patients are often as impaired as those in congestive heart failure. Lyme can even impact reproductive health. It can be transmitted in pregnancy to the fetus causing foetal distress syndrome and loss of the pregnancy as well as congenital defects. It has been also associated with autism and developmental delay of the newborn.
Your doctors might not agree on what is causing your symptoms.
Many physicians in the medical world do not agree on the best and most effective way to treat Lyme disease, or on whether or not Lyme disease can persist in the body after treatment. Your family doctor may not agree with a Lyme specialist about your diagnosis or treatment protocol.
It’s different for everyone.
Part of what makes Lyme disease so hard to diagnose is that it affects everyone differently. Some patients experience primarily physical symptoms, while others experience primarily neurological symptoms, and others a combination of the two. There is no clear symptom map for Lyme or tick-borne disease. Lyme disease can affect the whole family, with different family members experiencing different presentations of the disease.
Lyme is often misdiagnosed.
Similar to syphilis, another spirochetal infection, Lyme disease has often been referred to as ‘The Great Imitator’ for the way its symptoms mimic other diseases. Because of this, patients are often misdiagnosed and see multiple doctors before finally discovering they have Lyme. Common misdiagnoses include: Multiple Sclerosis, Alzheimer's disease, and Motor Neurone Disease.
It’s everywhere.
“Lyme disease has become scourge of the Northern Hemisphere and is now reaching across Europe, into Asia, and even Australia,” Dr. Raxlen writes in his book. This is not something that is just affecting the American Northeast. Rates of diagnosis continue to climb around the world. In the UK, ticks with Lyme disease can be found across the country, but are most prevalent in grassy, wooded areas. They are most active between March and October. London, East Sussex, Kent and Essex are the areas of the UK said to have a “very high” rating for the blood-sucking insects. Other areas with “very high” reports of the illness are Norway, around Copenhagen in Denmark, the Netherlands, Poland, Romania, the south of Germany, and around the Alps in Italy, France and Austria according to research completed by scientists around Europe as well as those from the University of East London and published in the International Journal of Health Geographics.