My Journey with Chronic Lyme Disease, and How I Got My Life Back
Learn about borrelia, and how I restored my health naturally
by Dr. Bill Rawls
Last updated 2/1/16
Likely, you have come to this page in hopes of sorting out some of the confusion surrounding Lyme disease.
There is so much controversy around this disease because most doctors don’t understand it. Even many doctors who consider themselves experts do not completely comprehend its complexities.
But I have one qualification that most other physicians do not. My life—and a successful medical career practicing OB/GYN—were disrupted midstream by fibromyalgia, later diagnosed as Lyme disease.
My forties were marked by debilitating fatigue, feeling like I had the flu that never went away, tremendous brain fog, aching all over, burning in my feet and tingling in my hands, joint pain, mood changes, poor sleep…over several years, I experienced virtually every known symptom of Lyme disease.
Fortunately, I was able to recover my health—and the things that I learned along the way changed my life forever.
My struggle with chronic Lyme disease taught me things that many physicians do not know. It ultimately caused me to stop searching for ways to “treat an infection with borrelia” (the microbe behind Lyme disease) and instead focus on strengthening the innate healing capacity of my body. It was only then that wellness became possible.
Borrelia, the Misunderstood Microbe
Retrospectively, I think I’ve had Borrelia burgdorferi (the microbe that causes Lyme disease) since childhood. Having spent much of my youth outdoors, tick bites were an everyday affair. Having borrelia and not knowing it is very common; stealth is its middle name.
Contrary to what most people think about borrelia (including many experts), it is actually much more stealthy than aggressive. People who contract borrelia from a tick bite typically experience only mild symptoms–if they have any symptoms at all. If immune function is robust, they can harbor the microbe indefinitely without ever having symptoms.
When illness does occur, it is chronic and debilitating, but typically not life-threatening. Additionally, the degree of chronic illness is highly variable. Some people are very severely debilitated, while others are only marginally miserable.
What You Need to Know About Borrelia
Borrelia rarely causes life-threatening illness, but it can make you desperately miserable for a lifetime!
Concentrations of the microbe in the body are always low (even when significant symptoms are present).
It grows very slowly and readily blends in with other microbes in the body.
It quickly penetrates deeply into tissues and spreads throughout the body.
Symptoms mostly result from the tug-of-war between the immune system and the microbe, not from direct damage by the microbe.
This causes nonspecific symptoms (such as fatigue, brain fog, muscle/joint aches, nerve problems, sleep disturbances, general achiness, feeling flu-like)
It is difficult to diagnose and even harder to eradicate from the body.
Because borrelia is so difficult to diagnose and can be harbored without causing symptoms, the true incidence of chronic Lyme disease is impossible to determine.
My symptoms appeared slowly…
My symptoms did not begin showing up until mid-life. By then, years of taking night call at the hospital several times a week, eating on the run, and unrelenting stress had taken a toll on my body… my immune system was wrecked.
I started experiencing bouts of sleeplessness, joint pain, and fatigue. Gradually my condition worsened to the point that I was experiencing sharp and throbbing muscle pain, overwhelming fatigue, brain fog, stress intolerance, anxiety, insomnia, tingling in my fingers and toes, debilitating chest pain, and irregular heart beats. My life was marked by chronic misery.
In my case, I believe the infection with borrelia came before the immune dysfunction. For some people with chronic Lyme disease, however, the exact opposite occurs. If chronic immune dysfunction is already established, an acute infection with borrelia tips the balance and allows chronic symptomatic illness to become established.
Like most people with chronic Lyme disease, it took me years of persistent effort to figure out what was going on, and then many years after that to figure out what to do about it.
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My Experience with Antibiotic Treatment for Lyme
When I finally concluded that I had Lyme disease, antibiotic therapy was, of course, my first consideration—killing off the microbes seemed like the fastest route to a cure.
But antibiotic therapy for Lyme disease is sticky and complicated. Most experts agree that 2-4 weeks of antibiotic therapy is indicated for acute Lyme disease, or immediately after infection.
But initial infection with borrelia is so mild that unless a person noticed a tick bite (people often don’t) or had the classic bull’s eye rash (which occurs in only 1/3 of cases), he or she may never know that infection has occurred. And even when infection with borrelia is highly suspected, lab testing is notoriously inaccurate.
Which means that most people who actually have Lyme disease are like me—they have all the classic symptoms of Lyme disease, but are unsure of when they were actually infected and have test results that are suggestive at best.
And for people with symptomatic–but unproven–Lyme disease, the options for conventional therapy are anything but straightforward. The CDC and IDSA[1] (the groups providing official recommendations), do not recommend antibiotic treatment unless you have a proven laboratory diagnosis.
At the other end of the spectrum, physicians with practices specializing in Lyme disease recommend antibiotics for anyone with symptoms of Lyme disease, positive test or not. Many of them advocate prolonged antibiotic therapy for up to 9 months, even though there are no studies supporting long-term use of antibiotics for Lyme disease.[2]
In fact, there are no studies proving that antibiotics work for borrelia. Antibiotics are used for Lyme disease because they appear to work in some cases (at least initially) and because there doesn’t seem to be any other options—not because there is strong evidence showing that antibiotics eradicate borrelia from the body (long-term or short-term after an initial infection).
A recent article published by the Infectious Diseases journal illustrates how persistent borrelia really is. The individuals in the study had Lyme-like symptoms, but tested negative for Lyme (similar to my experience). Despite negative testing, all people in the study received antibiotic treatment for up to 9 months.
Interestingly, after the 9 months were over, the researchers were still able to grow live borrelia bacteria out of the participants’ blood (using special culturing techniques)—even after the prolonged antibiotic treatment!
Even so, when you feel terrible every day of your life, you’ll try anything that might make the misery go away. And like most everyone else with chronic Lyme disease, I found a doctor who would write prescriptions and I took antibiotics on several occasions.
But each time I tried antibiotic therapy, by the end of the second week I would be absolutely miserable. Nausea, abdominal discomfort, and generally feeling terrible all over would increase, ultimately forcing me to stop the medication. Probiotics didn’t help, and the same response occurred even with different types of antibiotics. For me, conventional antibiotic therapy was not an option.
I later discovered that my experience was not unique; many people experience the same response. And as I began seeing Lyme disease sufferers in my medical practice, I became aware that many people develop persistent chronic symptoms after taking antibiotics, both short-term after an initial infection and long-term for chronic Lyme. I met quite a few people who had squandered their life savings on prolonged intravenous antibiotic therapy, only to end up worse off than before.
Over time, these factors caused me to completely change my stance on antibiotics for treating chronic Lyme disease.
While antibiotics do work well for acute infections with more aggressive, rapid-growth bacteria (such as bacterial pneumonia), they don’t work as well for stealthy microbes like borrelia. The very nature of borrelia makes it very resistant to synthetic antibiotic therapy.
Why Antibiotics May Not Work for Lyme Disease
#1. Borrelia’s corkscrew shape can bore deep into tissues
Borrelia, the stealthy microbe that causes Lyme disease, clears the blood quickly and penetrates deeply into tissues (including joint cartilage, brain, nerve tissue) where it is protected from antibiotics and the immune system. It can penetrate into cells, give up the corkscrew shape, and live inside of cells, thus gaining protection from the immune system and antibiotics. If confronted with a full antibiotic assault, it can form a dormant cyst and ride out the storm until the antibiotics are gone.
#2. Borrelia grows very slowly
Antibiotics work best on microbes that grow very rapidly and are densely congregated in localized areas in the body (like a pneumonia). Borrelia grows very slowly in the body and only occurs in very low concentrations in tissues. This is because humans have a long standing relationship with borrelia (many thousands of years) and the immune system immediately recognizes the microbe and suppresses it (but is often not able to eliminate it completely).
#3. Borrelia becomes part of the microbiome
Borrelia is a master at blending in with the trillions of other microbes that make up the human microbiome (the sum of all microbes in the body). Harming the human host is not its mission; it simply wants to scavenge enough resources to survive. Borrelia’s stealthy ability to lay low makes diagnosis and treatment a real challenge.
#4. Microbial coinfections complicate therapy
Borrelia rarely occurs alone. There are many stealthy microbes that can occupy space in the microbiome. Sometimes they occur as coinfections with the tick bite, but they can already be present in the microbiome (without causing symptoms) when infection with borrelia occurs. All such opportunistic microbes have stealth qualities similar to borrelia.
#5. Stealth microbes become resistant to antibiotics
Stealth bacteria, such as borrelia (and also the co-infections), respond very slowly to antibiotics and have more time to develop resistance to the antibiotic. The longer they can hang on, the more likely they can eventually become completely resistant and the antibiotic becomes completely ineffective (even with multiple antibiotics). Resistant bacteria are even harder to get rid of.
#6. Antibiotics suppress the immune system
When antibiotics are used to treat stealth microbes, the entire microbiome is targeted. Normal flora (friendly bacteria) in the gut and skin are the first to fall, and pathogens (disease-causing microbes) are able to flourish and actually become antibiotic resistant. This imbalance in the microbiome disrupts immune function and adds fuel to the fire—you cannot get well without optimal immune function.
#7. Borrelia can hide inside biofilms
Borrelia can exist in biofilms, which is a protected colony of microbes that form on a surface (such as plaque on your teeth), but what role biofilm plays in Lyme disease is controversial. The symptom profile of Lyme disease suggests that it is not primarily a biofilm disease.
#8. People are still searching for a solution
Possibly the most compelling suggestion that antibiotic therapy has significant limitations is this: if antibiotics really worked, people would not be searching for other solutions. But people are still scouring the Internet… by the thousands everyday.
A Change of Mindset
I didn’t start making forward progress until I finally gave up on the idea of trying to completely eradicate borrelia. I began to understand chronic Lyme disease not as a microbial infection, but rather as a breakdown of the body’s ability to fight off everyday threats (including opportunistic microbes).
In other words, it’s not that one big thing, but instead lots of little things coming together at one time that crush the ability of the immune system to respond properly.
And therefore, to recover, your primary focus should be restoring immune function.
When I stopped trying to “treat my illness” and instead started paying attention to why I wasn’t well in the first place, I began crawling out of the deep dark hole.
That, of course, took a radical change of mindset.
A Hopeful New Beginning
I gave up night call at the hospital; good sleep is essential for recovery. This ultimately resulted in leaving the group practice that I helped create, but it was worth it.
My diet had to change; that was a given. Admittedly, it was a challenging adjustment; I grew up in the fast-food generation. But with time, eating healthy became the new norm. Now it’s really not a big deal—and as a bonus, I stopped having digestive issues and overcame leaky gut!
Detoxifying my system was a simple matter of paying better attention to the world around me.
Stress didn’t go away. In fact, the process of changing over my life added a great deal of new stress, but I learned how to manage stress on the fly. I became a more centered person.
All these things helped, but it wasn’t enough. I wanted my whole life back… I wanted to feel “normal” again.
Natural Herbal Extracts—The Turning Point of My Journey
Of all the options I considered, natural herbs seemed the most appealing. It made sense that something natural that had been used by humans for thousands of years probably had value. I felt that herbs could provide the extra boost I needed.
In the beginning, I was very tentative with using herbs, but after reading one particular book by a gifted herbalist named Stephen Buhner, I embraced taking herbs full on. The book was about using herbs for healing Lyme disease, but it was also a great book on herbs in general.
Initially, I followed the protocol in the book, but as my knowledge grew, I expanded well beyond the protocol. I gradually came to appreciate that the true value of herbs was enhancing and balancing the natural healing systems of the body—a polar opposite of how drugs work.
7 Reasons to Choose Herbs:
#1. Each herb contains a wide spectrum of natural chemicals
Plants have to deal with the same threats to health and well-being that we do. They do it with a very sophisticated spectrum of biochemical substances that provide protection against a wide range of potential threats. These natural properties are inherent to the survival of the plant and benefit any creature that consumes the plant.
#2. Using multiple herbs together can be synergistic
Different herbs offer a slightly different range of benefits, therefore multiple herbs can be used together for combined and enhanced benefits. In fact, this is the preferred way of doing herbal therapy (a concept called “Synergy”). This provides for a wide spectrum of activity against a wide range of threats.
#3. Herbs have been safely used by humans for thousands of years
Over the millennia, humans naturally selected certain plant substances that mesh particularly well with human biochemistry. These plants, used for food and supporting normal health, were found to provide benefit without causing harm or side effects. Different herbs were traditionally used for different purposes. This knowledge has been passed down and recorded in the herbal traditions of the world.
#4. Herbs help the body deal with biofilms*
The immune system of the body is well equipped to deal with biofilms. Biofilms only become a problem when immune function is disrupted. By protecting and supporting normal immune function, herbal and natural therapies may enhance the ability to slowly etch away at any biofilms present. Some herbs also support an environment in the body that is counterproductive for biofilm formation.
#5. Herbs support a balanced microbiome*
Plants have to deal with the same friend-versus-foe problem that we do. The sophisticated spectrum of biochemical substances present in herbs support the normal balance of microbes of the body (microbiome)—while offering resistance to potential threats at the same time. This unique feature of plant medicines works quite differently than synthetic antibiotics. While herbs would never be a good choice for treating a life-threatening illness such as pneumonia, they are perfect for suppressing unruly opportunistic microbes that disrupt the microbiome.
#6. Herbs support the immune system*
Herbs support the ability of the immune system to function normally, shift the balance of the immune system away from inflammatory processes, and restore normal hormonal pathways. These balanced elements are some of the essential keys to getting and remaining well.
#7. Herbs are not seen as foreign substances*
Where most any drug will be seen by the body as a toxin and can potentially compromise liver function, it is almost as if the body naturally recognizes many herbal substances as being friendly and synergistic with the body.
*Disclaimer: These statements have not been evaluated by the FDA. This information is not intended to diagnose, treat, cure, or prevent any disease.
Understanding Herbal Therapy
As I continued the study of herbs, I realized that herbal therapy is like an orchestra of substances enhancing healing systems in the body. In a symphony, no single instrument matters; rather, it’s the entire orchestra playing in perfect synchrony that makes beautiful music and creates a larger-than-life experience. The sound produced by each instrument is replaced by a unique sound created by the sum of all the instruments.
Similarly, in herbal medicine, the sum of all the herbs in a formula can be more powerful than each herb individually (a concept called “Synergy”). An orchestra of herbs provides for optimal benefit. (Synergy doesn’t work as well with drugs because the inherent toxicities of the drugs are amplified.)
Synergy must be complemented by quality. An orchestra comprised of seasoned musicians is much more effective than one created with amateurs. Likewise, the higher the quality of herbal ingredients, the more powerful the formula is going to be.
Creating a Powerful Herbal Orchestra
While herbal therapy has been growing in popularity, you may have found that acquiring all the different herbal extracts in the right dosages to be a daunting task. This was my experience, and that of many of my patients.
In fact, it is what led me to create my own proprietary regimen of herbs, where I combined an orchestra containing 16 potent medicinal extracts to create a rich healthy environment within my body. All of the knowledge that I accumulated from personal experience and 10 years of intense study went into creating formulas of herbs that provided the most benefit.
16 Natural Remarkable Ingredients*
Alpha Lipoic Acid
Functional use: Potent antioxidant with the unique property of being both water soluble and fat soluble, which enables it to cross over inside cells easily. Recharges glutathione.
Andrographis
Traditional use: Native to India. Used for liver congestion, febrile illnesses, dysentery, intestinal problems.
Berberine
Traditional use: Berberine is a substance common to many herbs known for balancing microbes in the digestive tract and gut restoration.
Cat’s Claw
Traditional use: Native to the Amazon. Used for febrile illnesses, rheumatism, internal cleansing to normalize the body, digestive problems.
Chinese Skullcap
Traditional use: Potent synergist that amplifies effects of other herbs. Specifically suppresses certain disrupted portions of a microbiome imbalance. Immune support.
Coenzyme Q10 (CoQ10)
Functional use: Important in electron chain transport for generation of energy in the body. Potent antioxidant.
Cordyceps
Traditional use: In native Tibet, the extraordinary benefits of cordyceps was reserved for emperors. Today, these adaptogenic and immune-modulating properties are widely available.
Eleuthero (Siberian Ginseng)
Traditional use: Immune support, adrenal support. Adaptogenic; helps the body adapt and respond to a variety of stressful situations.
Garlic Extract (Patented)
Traditional use: Garlic has been revered as a healing agent by many cultures for thousands of years. Allisure is a special patented form of garlic with allicin, the active substance in garlic, stabilized for maximal benefit.
Glutathione Extract (Patented)
Functional use: Glutathione is one of the most important antioxidants in the body and is also essential for detoxification in the liver. Glutathione protects mitochondria from free-radical damage.
Japanese Knotweed
Traditional use: Widely used in Chinese medicine for febrile illnesses. Contains potent antioxidants including high levels of the well known restorative compound, resveratrol.
Milk Thistle
Traditional use: Protects liver function and enhances bile flow in the liver and gallbladder. Enhances detoxification.
N-acetyl Cysteine (NAC)
Functional use: Important antioxidant in all tissues, but especially the lungs, eyes, and liver. One of the building blocks for glutathione.
Reishi Mushroom
Traditional use: Anti-fatigue. Used to prevent senility, prolong lifespan, and restore the body’s ability to fight off infections. Supports liver, heart, lung, and immune functions. Helps the body adapt to stress.
Rhodiola
Traditional use: Native to Siberia. Revered by Chinese emperors for prolonging life. Decreases muscle stiffness and pain, balances immune function, protects heart and liver. Adaptogen.
Sarsaparilla
Traditional use: Native to the Amazon. Used for rheumatism, skin ailments, and as a general tonic for physical weakness. Also used for leprosy. Binds immune complexes and endotoxins.
*Disclaimer: These statements have not been evaluated by the FDA. This information is not intended to diagnose, treat, cure, or prevent any disease.
Important Considerations for Using Herbs
My passion for herbal therapy extended not only to the study of herbs, but also to the study of the modern herbal industry. Because of the Internet and globalization, remarkable things have been happening in the herbal industry over the past twenty years. Reputable companies across the globe are producing some of the most pure and potent herbal extracts that the world has ever known.
Of course, there is a lot of junk out there also. Many lesser grade products are created and promoted by marketing companies for the sole purpose of generating revenue.
This is one of the reasons why many physicians do not trust herbs. That and the fact that the medical education system (funded by pharmaceutical companies) is biased against herbal therapy and that doctors have no experience with herbs. If I had not lost my health, I would probably still feel the same way.
For those reasons, I decided to start formulating my own products that I could offer to patients with confidence. My daughter, Braden, who witnessed firsthand how herbs had improved my life, decided to join me to co-found a company called Vital Plan.
The mission of the company is to provide quality herbal solutions, educational programs, and customer support in a simplified, easy-to-use way.
For our primary program, the 16 ingredients above are combined into 4 formulas, dramatically streamlining the process of taking a full orchestra of herbs—just 3 capsules twice daily from each formula. You can view this program here.
A Guide for Your Journey
Herbs are the cornerstone for restoring a normal state of wellbeing, but they work best when complemented by a healing environment within the body. Making this happen is not as difficult as it might seem; it just takes a different mindset and getting used to a new way of life.
Although I do things differently now, I’ve come to really enjoy a healthful lifestyle. The trade-offs are worth it— things seem to improve for me every year. My joints are in great shape. My energy levels are sustained throughout the day and I am as active as I want to be.
As for the borrelia microbe, it is very likely that I still harbor it. I’m not sure anyone ever gets rid of it—knowing for sure is impossible. But the most important thing is the fact that I no longer feel any negative effects from the microbe.
Over time, I’ve compiled everything I’ve learned into a book called Suffered Long Enough to help guide the way for others. I complement that information with a 6-month email and video series that provides daily support, education, and inspiration. Both of these resources are available as part of the program that my daughter and I created.
The process that took me five years to figure out can now be learned in 3-6 months. If you can set aside 5-10 minutes every day, you can learn everything you need to know to get your life back and live again.
Learn more about my program >>
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Footnotes:
[1] The Center for Disease and Prevention (CDC) and the Infectious Disease Society of America (IDSA) are the current recognized authorities on Lyme disease treatment.
[2] Wormser et al, The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America, Clinical Infectious Diseases 2006, 43 (9), p. 1089-1134.
References:
1. Stephen Harrod Buhner, Healing Lyme, Natural Healing and Prevention of Lyme Borreliosis and Its Coinfections, Raven Press, Silver City, N.M., 2005.
2. S Buhner, Healing Lyme, second edition, Raven Press, 2015.
3. Stephen Harrod Buhner, Herbal Antivirals, Storey Publishing, 2013 AND Stephen Harrod Buhner, Healing Lyme Disease Coinfections, Healing Arts Press, 2013.
4. Kerry Bone and Simon Mills, Principles and Practice of Phytotherapy, Churchill Livingstone Elsevier, 2013.
5. Berghoff, W, Chronic Lyme Disease and Co-infections: Differential Diagnosis, Open Neurol J., 2012, 6, p. 158-178.
6. A G Barbour and S F Hayes, Biology of Borrelia Species, Microbiol Rev. Dec. 1986, 50(4) p. 381-400.
7. A Steer, J Coburn, and L Glickstein, The Emergence of Lyme Disease, J Clin Invest, April 2004, 113(8), p. 1093-1101.
8. http://www.cdc.gov/lyme/treatment/
9. Wormser et al, The Clinical Assessment, Treatment, and Prevention of Lyme Disease, Human Granulocytic Anaplasmosis, and Babesiosis: Clinical Practice Guidelines by the Infectious Diseases Society of America, Clinical Infectious Diseases 2006, 43 (9), p. 1089-1134.
10. Hvidsten et al, Borrelia burgdorferi sensu-lato-infected Ixodes ricivous collected from vegetation near the Arctic Circle, Tick Borne Dis., July 6, 2015.
11. Masuzawa T, Terrestrial distribution of the Lyme borreliosis agent Borrelia burgdorferi sensu lato in East Asia, Jpn J Infect Dis, Dec 2004, 57 (6), p. 229-235.
12. Casadevall and Pirofski, Host-Pathogen Interactions: The Attributes of Virulence, J of Infect Diseases, Feb 2001, 184, p. 337-344.
13. Casadevall and Pirofski, Host-Pathogen Interactions: Basic Concepts of Microbial Commensalism, Colonization, Infection, and Disease, Infection and Immunity, Dec 2000, p. 6511-6518.
14. Casadevall and Pirofski, Host-Pathogen Interactions: Redefining the Basic Concepts of Virulence and Pathogenicity, Infection and Immunity, Aug 1999, p. 3703-3713.
15. *Rudenko et al, Isolation of live Borrelia burgdorferi senso lato spirochaetes from patients with undefined disorders and symptoms not typical for Lyme borreliosis, Clin Microb Infect, in press 2015, 1.e-1e.7.
16. Murray, Rosenthal, Pfaller, Medical Microbiology, 8th ed, Elsevier, 2016.
17. Goering et al, Mim’s Medical Microbiology, 5th ed, Elsevier, 2013.
18. Jawetz, Melnick, & Adelberg, Medical Microbiology, 24th ed, McGraw-Hill/Lange, 2007.