One of my favorite things about living in the Catskills is taking long walks with my dog, Lola. But just this past weekend, we both came home covered in ticks. Lyme disease was my first concern. So far, we’ve both been lucky and fine, but I still need to be super vigilant about protecting myself and my beloved fur-kid. Lyme is one complex mofo. So today, we’re going to take a deep dive into this tick-borne bacteria and fully uncover all of its intricacies.
Lyme is called the “Great Imitator” for a couple reasons. First, it’s easily mistaken for other serious chronic conditions. Second, it’s been known to be at the root of many neuropsychiatric symptoms, from depression to anxiety to early dementia.
There are also different forms of Lyme. Acute Lyme happens when it’s caught early and treatment occurs within the first month of a tick bite. In these cases, it’s cured almost 75% of the time with antibiotics. But if an infectious tick bite goes unnoticed, it can lead to Chronic Lyme. In addition, Lyme bacteria can enter the nervous system and cause neurological issues. Plus, they typically travel with some co-infection buddies, like Babesia and Bartonella. The result? A wide range of chronic illnesses that are prevalent today.
Since 2013, there’s been a big increase in Lyme cases, with nearly 400,000 individuals a year infected with the disease (study). Blood tests are often unreliable and only detect about 50% of Lyme disease cases. So, there’s probably closer to one million cases happening each year. That’s a whole lot of people dealing with symptoms! So, let’s roll up our sleeves and truly understand this beasty. The more we know, the more we can prevent and treat it.
To help us understand Lyme disease and all its signs, testing options and treatments, I’ve turned to our wonderful friend, Richard Horowitz, M.D., a leading expert on Lyme disease who has treated over 12,000 chronic patients. His book, “How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease”, is one of the very best books on the subject.
As you can already tell, Lyme is complicated. So, it’s going to take a bit to unpack this topic for you. If this feels like too much information to take in at one sitting, bookmark this blog and finish reading it a little later. What’s important is that you take your time and make the most of this priceless knowledge. And if you know someone who would benefit from this information, please pass this blog along.
OK, let’s dive in and start with the warning signs…
Dr. Horowitz: The hallmark of Lyme disease is that the symptoms come and go with good and bad days, and the pain usually migrates around the body, whether it be joint pain, muscle pain and/or nerve pain (usually described as tingling, numbness, burning and stabbing sensations). Migratory pain is very specific for Lyme disease. You don’t see that with Chronic Fatigue Syndrome or Fibromyalgia, which can also both be due to a viral infection.
Other classic symptoms include hormonal fluctuations in women, where there are worsening symptoms around the menstrual cycle, as well as an improvement or worsening of symptoms with antibiotics (called a Jarish-Herxheimer reaction, which is an increase in symptoms as the bacteria are being killed off). Also, resistant fatigue (mild, moderate or severe), a stiff neck, headache, light and sound sensitivity, memory and concentration problems, word finding problems, sleep disorders (problems falling asleep and frequent awakening), chest pain and palpitations, as well as mood swings with an increase in depression and anxiety.
When Lyme affects the part of the body which controls the blood pressure, heart rate, bowels and bladder (called the Autonomic Nervous System), this can lead to symptoms of unexplained nausea, vomiting and chronic constipation, difficulty urinating, as well as dizziness standing associated with anxiety and palpitations (due to a drop in the blood pressure with a compensatory increase in the heart rate). This constellation of symptoms is referred to as POTS (Postural Orthostatic Tachycardia Syndrome)/dysautonomia (a dysfunction of the Autonomic Nervous System) and requires specific therapies to treat these symptoms.
If a patient complains of day sweats, night sweats, flushing, chills, air hunger (shortness of breath) and an unexplained cough, these are classic symptoms of a co-infection with Babesia, which is a malaria-like illness. Co-infection with Bartonella species can cause a new onset of a seizure disorder, unexplained eye symptoms with inflammation (iritis, uveitis, optic neuritis) and severe resistant neurological symptoms, including neuropathy (nerve pain/tingling/numbness) and an encephalopathy (cognitive difficulties). Bartonella patients may also have a distinct rash on various parts of their bodies. This can appear as red or white “stretch marks” over the chest, back, buttocks and lower extremities, which are either horizontal or perpendicular to the skin planes.
Dr. Horowitz: The major route of transmission of Lyme disease is through a tick bite, but only half of the infected individuals get a rash, and less than half of those present with a classic bull’s-eye rash. Many rashes look like solid red, spreading rashes, which can be confused with a cellulitis (infection in the skin) or a spider bite. Other borrelia species (like the newly discovered Borrelia mayonii) can cause diffuse and spotty rashes, so the type of rash depends on the borrelia species.
Another route of transmission of tick-borne diseases includes maternal-fetal transmission of the Lyme bacteria from a mother to child. This has been reported in medical literature and can lead to severe complications in the fetus. This is also true for co-infections, like Babesia and Bartonella, which can be transmitted from a mother to a child in the womb but can also be transmitted through an infected blood transfusion. Lyme can survive in a blood bank but has not yet been proven to be able to be transmitted by transfusion, although other borrelia species, like relapsing fever borrelia, can theoretically be transmitted with infected blood.
Another potential route of transmission includes sexual transmission of Lyme disease, but it has not yet been definitively proven. And finally, other routes of transmission of tick-borne diseases, like Bartonella, include bites from fleas, mites, lice, biting flies and spiders.
Dr. Horowitz: The standard two-tiered testing of an ELISA followed by a Western blot, which is used by the CDC, is known to be inaccurate. It will miss approximately half the clinical cases of Lyme disease. The diagnosis of Lyme disease is ultimately a clinical one. Even the CDC says this. The issue, of course, is how do you make the clinical diagnosis. The key point in making a diagnosis is to take a proper history and rule out other diseases that cause overlapping symptoms.
I have a questionnaire in my new book, “How Can I Get Better?”, that we validated with the help of SUNY New Paltz researchers, and we discovered that a score greater than 63 on the questionnaire statistically gave you a high probability of having Lyme disease. The key was to determine if the classical symptoms we discussed were present. When you use that score with an expanded testing panel for tick-borne disorders, you can usually make the diagnosis. I have a section in my new book that explains in detail how to do a differential diagnosis and use these tests if you have gone from doctor to doctor looking for answers and still find yourself chronically ill.