by Dr. Bill Rawls
Experiencing debilitating symptoms day after day without finding satisfactory solutions and answers to your many questions is one of the most frustrating parts of dealing with Lyme disease. Sometimes, your body feels as though it’s betraying you — joint pain, fatigue, insomnia, digestive issues, and impaired immune function are probably just the tip of the iceberg of what you endure on a consistent basis.
Often, I’m asked the same questions about how to cope and recover from Lyme disease. In this article, I aim to answer some of your most pressing concerns, and to give you the tools you need to improve your health and help you heal from the devastating blow of a chronic illness. Ultimately, I believe you can recover — just as I did — and lead an active, fulfilling life!
Question 1: How Can I Tell If I Have Lyme Disease? I Was Told I Had It, But My Tests Were Negative.
Answer: Lab tests provide a snapshot of what’s going on inside your body, but multiple other factors — including your symptoms, the length of time you’ve had them, and clinical presentation, as well as the environments in which you live, work, and travel — all factor into making an accurate diagnosis of Lyme disease. So it’s entirely possible to have negative blood tests and still have Lyme disease.
General lab evaluations for Lyme disease, like the ELISA and the standard Western Blot, are usually unremarkable unless your illness is caught in the acute stages, and your test is done 4 to 6 weeks after you’ve been infected. The detection of a microbe in the body is only as good as the technology, and right now, the technology for diagnosing Borrelia and other low-virulence stealth microbes is fair at best. Other reasons your tests may be negative when you are symptomatic for Lyme include:
- Testing is mostly useful for diagnosing acute illness, not if you’ve been symptomatic for months or years.
- The standard Western Blot measures your antibody levels, but the production of antibodies doesn’t occur until the body’s secondary defense kicks in, and it’s dependent on the host’s ability to mount a sufficient immune response. If you’ve been sick for a while, your immune system is likely compromised and can’t generate the type of antibodies needed for a positive test.
- Stealth microbes commonly live inside cells and not in the blood — some can exist in cyst forms (especially when they are under pressure). Both are factors that make diagnosing Lyme disease with traditional blood tests a real challenge.
- Most testing is oriented toward the diagnosis of Borrelia burgdorferi, the primary bacteria associated with Lyme, and not other species of Borrelia that may cause Lyme disease or other problematic coinfections like Bartonella, Babesia, Mycoplasma, and more.
Question 2: What Can I Do to Reduce Herxheimer Reactions?
Answer: Within a day or two of starting a new treatment regimen, you might notice your symptoms take a turn for the worse — intense fatigue, difficulty sleeping, increased pain, and new onset flu-like symptoms. This is known as the Jarisch-Herxheimer Reaction, and over time, has been shortened to Herxheimer Reaction or simply, herxing.
A typical explanation of a Herxheimer Reaction in people with Lyme disease is that when Borrelia bacteria are killed off by an antibiotic or herbal therapy, parts of dead bacteria called endotoxins are shed in the body. These endotoxins then circulate throughout the body and cause an intense whole-body inflammatory reaction. And that makes the war against microbes that’s already going on inside you even worse.
Although the intensification of your symptoms can be disconcerting, if you’re treating Lyme, the odds are good you’ll experience at least some amount of herxing. Here are ways to support your body through this process:
- If necessary, back off on your treatment dosage or even stop altogether. Then, once your symptoms are tolerable, you can gradually increase your dosage again.
- Stay hydrated with a beverage like fresh ginger tea, which has potent systemic anti-inflammatory properties for reducing Herxheimer symptoms.
- Use anti-inflammatory herbs like turmeric, boswellia, and krill oil to quell inflammation.
- Prioritize sleep by trying to get 7 to 8 hours each night.
- Chlorella offers detoxing and healing properties, and it does wonders for healing an irritated stomach and restoring digestive function. The typical maintenance dose is 5 to 7.5g total a day. For additional support, I suggest 10g total a day. Chlorella can be taken any time of day, but for best results, take it with food.
- Heat can be very soothing during Herx reactions. A far infrared (FIR) sauna or a hot bath are excellent for removing toxins from the body. Adding Epsom salts to your bath can also help soothe muscles and joints.
Question 3: If I’ve Been Treated for Acute Case of Lyme, Can My Symptoms Pop Up Later?
Answer: In short, yes. Let me explain:
In an acute case of Lyme disease, heroic therapies like antibiotic treatment are effective at suppressing the harmful microbes for the majority of people and allowing the immune system to do the work of keeping them at bay. However, various studies indicate that antibiotic therapy often isn’t sufficient in eliminating the microbes from your system — meaning, you could still receive a standard course of treatment and continue to remain symptomatic, which can lead to symptoms of chronic Lyme disease.
On the other hand, you may receive antibiotics and feel well following the treatment. But Borrelia is very good at persisting in the body. Plus, there’s no test to accurately determine if the bacteria has been fully eradicated from you. Because Borrelia is stealth, it can remain alive and dormant deep in tissues for the rest of your life without you realizing it is there.
However, if your immune system functions become disrupted for any reason, microbes in tissues flourish, causing inflammation and fueling a vicious cycle of chronic immune dysfunction that can leave you miserable for a lifetime. If your immune system can’t keep stealth pathogens like Borrelia in check, it increases your lifetime susceptibility to minor infections like cold and flu, as well as chronic illnesses, including Lyme disease.
Unfortunately, life in the modern world places unique pressures on the body’s operating systems, especially immune system functions. These stress factors are unlike anything that humans have ever been exposed to before. That’s because they’re a result of our own modern innovation. I call these chronic stress factors System Disruptors, and they include:
- An unnatural, carbohydrate-laden diet
- A toxic environment
- Chronic stress
- A sedentary lifestyle
- Infections with new microbes that further disrupt immune system functions
One day, you may notice a new or returning set of symptoms causing you discomfort, and a resurgence of Borrelia might very well be the culprit. But rather than treating the symptoms alone, the best solutions are directed toward decreasing System Disruptors to restore normal immune system functions and balance in the microbiome (total microbial makeup of the body).
Ultimately, restorative therapies, like nourishing your body, increasing your physical activity, and cleaning up your environment, provide the body with the tools it needs to strengthen the immune system and control any threatening microbes in the margins.
Question 4: What’s the Best Lyme Diet?
Answer: A healthy diet is a critical component of your recovery. But with so many different diets to choose from, how do you know which one is right for you?
Over the years of studying chronic Lyme disease and other chronic illnesses like fibromyalgia and ME/CFS, I’ve learned that diets consisting primarily of fresh vegetables and low-sugar fruits, quality sources of protein and fats, and minimal refined carbohydrates and processed foods are paramount for helping you get the vital nutrients you need to energize and restore your body.
No matter what diet you decide to follow, choosing foods without a label in most instances is the best step you can take towards creating a healthy diet. By implementing these dietary recommendations, you’ll begin to feel better and nurture your body through the healing process.
Question 5: Is There Any Hope That I’ll Cure My Lyme Disease?
Answer: That really depends on what you mean by “cure.” Lyme disease devastated my life around age 50, but at age 61, I’m now able to do all the things that I want to do and more. If I view my situation from the perspective of the number of activities I’m able to participate in, I’d say that I’m living a normal life without being burdened by symptoms of illness. That should be your ultimate goal: living a symptom-free life.
But have I wiped out all the bad microbes from my body? Probably not. Like I mentioned earlier, there’s no test to prove whether or not you’ve eliminated Borrelia from the body. Remember, it’s a persistent, stealth bacteria, and it’s the job of our immune system to keep those sneaky pathogens suppressed.
Maintaining a healthy immune system and engaging in a healthy lifestyle are crucial to overcoming Lyme disease. For me, I depend on herbal therapy to keep my immune system functioning well — I take a regular assortment of herbs, including suppressive antimicrobial herbs, every day, and I have been for 10 years. Each year, I seem to be getting just a little bit better.
Question 6: Many General Practitioners Have Turned Me Away or Told Me My Symptoms Were Related to Stress and Anxiety. How Can I Work with the Medical Community to Get the Care I Need?
Answer: I’ve been on both sides of the fence, so I’m all too familiar with this struggle. I have been a physician for 30 years, and for 10 of those years, I was struggling with Lyme disease myself. I really have come to appreciate the fundamental flaws in our medical system as far as looking at these kinds of illnesses.
Our medical system is designed to address acute illness: a broken leg, a heart attack, pneumonia, etc. We do a really wonderful job when it comes to the sudden or intense onset of a condition because that is a problem with an acute fix, namely drugs and surgery. And there are acute cases of Lyme disease, where people get bitten by a tick and they become acutely ill.
But actually, acute Lyme is not very common. Most people don’t become significantly symptomatic after a tick bite. It’s later, when their immune system becomes depressed, that they begin to develop chronic symptoms — everything from brain fog to joint pain and other dysfunctional symptoms throughout their body.
Many physicians become frustrated because they’re caught between not having enough time to really think about your chronic symptoms and not having good therapies to solve the problems. Ultimately, it comes down to a test determining whether you have a positive Lyme test or not.
Unfortunately, the results are often equivocal, and the doctors don’t know how to interpret it. They have very few tools to help you, which means you may end up with a diagnosis like anxiety and receive instructions to reduce your stress. That’s a condition that a doctor can diagnose and treat given time constraints and limited tools.
But confronting a chronic illness can be a daunting task, and having positive relationships with medical providers is important. The key to making the best use of the healthcare system is respecting its limitations and learning how to work with practitioners within those limitations.
Medical providers should not be viewed as potential saviors, but rather as part of a team that’s helping you get well. You are the captain of that team: You are ultimately responsible for any decisions that are made.
When it comes to working with the medical community, step one is cultivating a positive relationship with a primary care physician (PCP). Bear in mind, that person will be most effective when fulfilling the immediate needs that you have from the healthcare system. To get the most from your appointments, remember the following points:
- Your doctor can’t tackle every complaint, so be specific about which goal you want to achieve during that appointment.
- Be organized, and have information readily available, such as previous lab results and or personal observations, that may be helpful in achieving the goal of the visit.
- Remember that your provider has 15-30 minutes (maximum) to spend with you, so be mindful of their time.
- Most likely, your provider’s knowledge and training generally does not extend beyond conventional therapies, so expect them to offer you drug therapy, surgical interventions, or referrals to specialists.
- Although you may know more about your chronic illness than your doctor, be gracious. Never try to “one-up” your doctor in knowledge. That won’t make for a productive appointment for your situation.
Lastly, consider adding non-medical support, such as chiropractors, acupuncturists, and energy medicine practitioners, to help manage symptoms as needed or when your recovery is not progressing. You may find that some of these practitioners are covered by your insurance.
Question 7: Can I Take Herbs While Being on Antibiotics?
Answer: Ideally, I’d like to see people get well using only herbal therapies, because they are restorative to the body and don’t disrupt your microbiome. However, there may be times when antibiotics are necessary, or you’re in a transitional state from antibiotics to herbs.
Because herbs have a normalizing effect on the body and a low chance of toxicity, they can be used in conjunction with many medication regimens. Herbs may allow a person the ability to take less medication and reduce the side effects of drugs. I think it’s important for people to know that herbs support healing.
But of course, making the decision to take any natural regimen in conjunction with antibiotics should be in partnership with your healthcare provider.
Question 8: Do Antibiotics Work for Chronic Lyme?
Answer: There is definitely a place for using antibiotic therapy for treating acute symptomatic Lyme disease and coinfections. But the primary problem is that synthetic antibiotics do not kill only pathogens — they kill all bacteria, including your normal flora.
When you look at the microbes that are associated with Lyme disease, you’ve got a short window of opportunity that’s directly after the infection — when these microbes enter the body and are disseminating through the body. That’s when you can hit them with antibiotics, and it might knock down their counts enough that the immune system can take over.
But the stealth microbes associated with Lyme disease are survivors. When full guns are levied at the microbiome, stealth microbes are generally the last ones standing. Normal flora are very susceptible to being killed by antibiotics. The harder and longer stealth microbes are targeted with potent antibiotics, the higher the possibility that normal flora will get caught in the crossfire, which allows potential pathogens to flourish, causes yeast overgrowth in the gut, fosters antibiotic resistance, and disrupts immune function.
Furthermore, there is little consensus on antibiotic use for chronic Lyme disease. Although antibiotics knock the microbe numbers down, the bacteria still get into your tissues. If your immune system isn’t strong, then antibiotics alone aren’t likely to be enough. Plus, repeat doses are going to hit your normal flora hard enough that it can really make some people feel worse instead of better.
Question 9: How Do I Know if I Have Coinfections — Can I Test for Them?
Answer: As you get to know Lyme disease, you’ll understand that the illness is much more complicated than an infection with Borrelia burgdorferi. Aside from Borrelia, the most commonly described tick-borne microbes associated with Lyme disease include Mycoplasma, Bartonella, Babesia, Ehrlichia, Anaplasma, Rickettsia, and more recently Chlamydia; these are called coinfections, and they are remarkably common.
Additionally, research is discovering lesser known and lesser virulent species of these microbes that are associated with chronic Lyme. Reactivation of Epstein-Barr virus and herpes-type viruses are common in chronic Lyme, too.
When you start seeing chronic Lyme disease for what it is — chronic immune dysfunction, with a pot of stealth microbes boiling over — the compulsion to test for specific microbes becomes less relevant. There are always possibilities that can’t be accounted for. When I evaluate a person with possible chronic Lyme disease, it’s easier to just assume that Borrelia and other stealth microbes are present and playing a role in that person’s symptoms. This allows me to have less reliance on testing because lab results are often unreliable.
The only time that I find value in testing is when a patient isn’t doing well, despite doing all the right things. But even then, test results have to be taken with a grain of salt.
Question 10: How Do I Cope with a Relapse? It’s Very Discouraging.
Answer: It’s true, relapses can be very disheartening, but setbacks are an inevitable part of the process of recovering from chronic illness. When you’re feeling overwhelmed, remember this: This setback is just a bump in the road. Sometimes a big bump, but still just a bump — not a mountain. You will get back on track.
Fortunately, with time, setbacks gradually become less common and less intense. As you get better at self-analysis and self-correcting, you’ll get back on track more quickly. When a setback occurs (and it will, many times over), do not become mired in depression and fear — that will only hold you back. It’s time to become proactive.
To overcome a setback, get in the habit of going through the list of those five System Disruptors I mentioned earlier that lead to immune system dysfunction to look for causes — generally, you’ll find your answers there. To refresh your memory, they are:
- An unnatural, carbohydrate-laden diet
- A toxic environment
- Chronic stress
- A sedentary lifestyle
- The possible introduction of a new microbe
Possibly the most important encouragement I can pass along is that as my condition has progressively improved over the years, setbacks are fewer and briefer. Now, even after considering myself recovered, I still occasionally get them, but recovery is usually a matter of days, not weeks.