Lyme Disease: Symptoms, Testing, Treatment & Prevention (Interview)

Hiya Gorgeous,

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…

Kris: What are some of the common and not-so-common symptoms of Lyme disease and co-infections?

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.

Kris: Does an individual have to be bitten by a tick and present with a bull’s-eye rash to contract Lyme disease and co-infections? And, are there other routes of transmission?

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.

Kris: Are the standard Western blot and ELISA tests accurate? If not, how should an individual who suspects he/she may have Lyme disease and co-infections go about finding the proper diagnosis?

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.

lyme disease testing resource sheet
Kris: What does the typical treatment protocol for Chronic Lyme disease entail? And, is it curable?

Dr. Horowitz: The Lyme bacteria has different forms and locations in the body, so the most effective treatments are to combine antibiotics and natural therapies to address each of the different forms and locations.

However, everyone’s response to therapies is different. Patients with chronic symptoms after classical treatment for Lyme disease often have multifactorial causes for their illness. I call this syndrome Lyme-MSIDS (Lyme-Multiple Systemic Infectious Disease Syndrome) and it represents sixteen potential overlapping medical problems contributing to persistent symptoms in the Lyme patient.

The first point on the MSIDS map is infections. Ticks contain multiple bacterial, viral and parasitic infections which can be transmitted simultaneously with Borrelia burgdorferi, the agent of Lyme disease, and those who are infected with Lyme disease and associated co-infections are much sicker and resistant to standard therapies.

Patients with Lyme-MSIDS also have evidence of associated immune dysfunction, inflammation, environmental toxins with a multitude of other symptoms, which are detailed in my book. These factors can keep the patient chronically ill. The key is to find all the overlapping causes of inflammation in the body that are contributing to chronic illness. The term “Chronic Lyme disease” needs to be redefined as Lyme-MSIDS to more accurately reflect the multiple underlying etiologies responsible for persistent symptoms.

Kris: Do you believe that every patient requires long-term antibiotic therapy or can some cases be treated with strictly holistic and herbal approaches?

Dr. Horowitz: Some cases can be treated with short-term antibiotics while simultaneously using an integrative approach to finding the overlapping causes of inflammation. This is where using herbal treatments with the 16-point MSIDS model as a roadmap to health can be very helpful. The people who come to me have usually been to 10-20 doctors and have been sick for many years before I see them—and usually require a longer-term antibiotic protocol while using the MSIDS approach.

Kris: What preventive measures can we take to protect ourselves from this growing epidemic?

Dr. Horowitz: It is best to wear protective clothing treated with permethrin, which kills ticks, while placing tick and mosquito repellants on exposed skin. These include products like Avon SSS IR3535 and picardin, which are safer than DEET (which can be used in a 20% solution, if going into very high-risk areas). For a totally natural alternative, try Outdoor Lyme Armor formulated by Lyme herbalist, Stephen Harrod Buhner (whose in-depth book on Lyme is listed in the downloadable Lyme Disease Cheat Sheet).

Wearing light colored clothing with the pant legs tucked into the shoes is also helpful while doing regular tick checks. Proper removal of the tick by getting underneath it with a tweezer and not squeezing it is important to prevent transmission of infection. You can save the tick and put it in a baggie or vial with alcohol and have your health care provider or health department send it out for testing to determine which organisms are in the tick. If the tick was attached for more than several hours and difficult to remove, or especially if it is engorged with blood, it is best to speak to your doctor about a course of prophylactic antibiotics. Once you come indoors, you can also place your clothing in a dryer at high heat for 15 minutes, which will kill ticks.

The key is to remember that Lyme and associated tick-borne diseases have spread worldwide, and you can catch an infection in your backyard, not just going into the woods. Education about the signs and symptoms of Lyme and associated tick-borne disorders with proper prevention are the most important steps we can take to keep ourselves and our families healthy.

Well, that’s Lyme in a (large) nutshell. Thanks, Dr. Horowitz! I’m so thrilled to be able to share your knowledge and experiences with readers. If you have any questions, helpful resources, interesting tips or want to discuss your experiences, please drop them in the comments below—it’s a space where we can all learn from and share with each other.

Peace & perseverance,

Kris Carr

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