NAVIGATE

Kris Carr

Wellness

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.

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.

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 KrisCarr.com 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,

Add a comment
  1. Thank you for raising awareness! Lyme Disease and its co-infections are awful and more people need to understand how serious it is. And Dr. Horowitz is great!

  2. Ernest van der Velden says:

    http://www.tekenradar.nl in Holland there is a country-wide registration possibility when you are bitten by a tick. Every 2 month you can send in information about your healht condition. Very good initiative.

  3. Lisa Halpern says:

    I was diagnosed with Lyme Disease in 2010 after 20 years of misdiagnosis. I’ve done antibiotic holistic and herbal treatment and am at a much better baseline than ever. The only thing that I can’t seem to reduce, is the associated anxiety, which has increased over the past few years. I recently tried PharaGABA which helped a little for a while and then didn’t seem to any longer. Any suggestions on treatment other than anti anxiety meds? Thank you!

  4. Heather says:

    Thanks for the awesome info, Kris! I had Lyme disease (and possibly babesiosis) in 2011 and after the urgent care docs sent me down a reeeeally wrong path, I found much relief in a natural remedy called Lyme-Aid. I wrote a bit about it.

  5. Diana says:

    I live in Maine and I have lyme disease,sjgrens syndrome , celiac, Graves, disease, lupus and I have a hard time eating right, I have gained a lot of weight this past winter, and I have been blue, let me know if you would like to take me on as a project and do a before and after, I really am inspired by you and feel as though I could really benefit from your help. I am 56 years old. Thank you for your consideration.

  6. Kris Carr says:

    Wanted to pop in here & talk pets! Rose geranium oil is what we use too (for us and Lola). Here’s a few extra tips:

    There are two kinds of rose geranium oils, from what I understand you want to go with the Pelargonium capitatum x radens variety.

    Apply a few drops or make a spray mixture (20 drops of oil + 10 oz water). You can also add in a little citronella, lavender, lemongrass, eucalyptus, and cedar wood too. We usually buy a natural repellant at the health food store and then doctor it up with these oils. Keep in mind that a little can go a long way. Avoid your dogs face and be mindful not to soak their coat. Dogs have a much stronger sense of smell than we do so don’t over do it. xo, kc

  7. Céline says:

    Rose geranium essential oil is a great repellent. We used to get ticks whenever we had walks in the New Forest (renowned for it) but haven’t had any since using it. We put a drop on each ankle, each wrist, behind each ear.
    Also good for dogs.

  8. Tracey Thomas says:

    Can you go anywhere and request a Lyme Disease test? Or does it have to be ordered through your PCP?

  9. Deborah says:

    You may very well have just saved my life. I have ALL the symptoms. ALL. OF. THEM. I’ve begged docs to help me with the weird pains I get. They pop up anytime anywhere and can be like a stabbing pain, a vie-like gripping pain and what I call little comets making a shooting pain. I could never figure out if it was muscle, nerve or bone pain. I get all of them. They’re so intense sometimes they’ve brought me to my knees in the middle of Whole Foods. I’ve had heart palpitations too. I’ve gone to the doc convinced I was having a heart attack in slo-mo only to be laughed at by the sarcastic doc! I’ve been suffering, and I mean SUFFERING, for a good ten years now. NO ONE has done a thing to help me! I can’t STAND western docs. I refuse to ever go to one again. They’re all drug pushers, nothing more nothing less. I would be willing to see a Lyme specialist though. However, I am not taking any antibiotics. If I can heal the natural way I’m going that route. Thank you Kris. From the bottom of my heart, thank you.

  10. Christina M says:

    This was a great post, and very, very informative! One of my best friend’s dads died from a heart attack caused by misdiagnosed Lyme’s disease when we were teenagers, and I have been very proactive about prevention since.

    My only question is that, since you mention your dog at the beginning, will you have a post covering prevention for dogs as well? I live in northern Illinois and camp in Wisconsin with my dogs, so I’m a firm believer in the Lyme vaccine for dogs, even if it’s efficacy is only 60-70%. It would still be helpful to know some tips and tricks to best prevent ticks to cover the other 30%!

  11. Wow Kris, I just sent this to a few people suffering from this disease. Really informative. Thanks girlie:)

  12. Sharon Andrew says:

    We have had a lot of success with deterring ticks on our dog by using rose geranium essential oil. We use a blend of 15 drops of essential oil with 2 teaspoons of carrier oil such as grape seed oil or olive oil and put a few drops of the blend on her back between the shoulder blades and the base of her tail. As she doesn’t go in water very frequently, despite being a Labrador, we reapply it every 2 days, or more frequently if it’s raining. I haven’t found any ticks on our girl since we started using this about 6 weeks ago where as previously we were finding several a day.

    • Kris Carr says:

      Thanks so much for sharing this tip, Sharon! xo, kc

    • Great tip for dogs! Don’t use essential oils on cats though. Cat’s and essential oils do NOT mix (unfortunately)

      • Lexy says:

        Eva this is not accurate. Essential oils are actually fantastic for cats! There are some that are very toxic for cats like tea tree, some citrus oils and other “tree” oils. They will require a dilution of 1:100 and can be applied topically. Like most things, you might find info saying all essential oils are toxic out of fear based rational. Check out Dr. Janet Roark. Hope that helps ?

        • Hi Lexy
          I’ve tried esential oils on my cats (even ones that said where suitable for cats!) and they all reacted badly. Even when i diluted them more than the advice 🙁
          So i’m staying away from essential oils for my cats. Of course everyone , or should i say everycat, is different and you have a choice to use these or not. but i have to warn people when i read this because of my own and other cats in my neighbourhoud’s experiances. I’ve not yet found a cat that reacts well, so just be carefull please 🙂

  13. Monica says:

    Great information and advice. What’s the most effective tick preventative treatment for my dog? I have tried organic controls with little success, unfortunately.

Leave a Reply

Your email address will not be published. Required fields are marked *

KrisCarr.com