Dr. Eva Sapi teaches Biology at the University of New Haven and has a research group that studies Borrelia burgdorferi.
Lyme disease numbers are going up with approximately 476,000 of Americans diagnosed and treated for Lyme disease from CDC surveillance data covering 2010-2018.
In vitro and clinical data observing the efficacy of antibiotics against Borrelia burgdorferi found that antibiotics, in some cases, do not work against Borrelia burgdorferi. In the mid-90s, in vivo studies found evidence that antibiotics such as tetracycline, erythromycin or doxycycline, failed to eradicate acute Borrelia burgdorferi infections. Studies turned to a stronger antibiotic, ceftriaxone. These studies also showed antibiotic resistance of Borrelia burgdorferi. These results led to the question of why Borrelia burgdorferi cannot be killed and if any other form(s) exist that are resistant to therapy.
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**Comment**
Very interesting webinar on the persistence of Lyme.
Sapi is also known for her in vitro work with Stevia. When I inquired about dosages, she stated those have not been determined. Dr. Horowitz and many other LLMD’s are using stevia as a biofilm and cyst form disruptor. The new kid on the block is liposomal oregano oil (some also use clove and cinnamon or a combination of the three) based on Dr. Zhang’s work.) When I inquired about these, she stated that these same doctors are also finding results using them but results are anecdotal. Dr. Phillips mentions it in his book “Chronic.” Dr. Ross also mentions it.
I’ve previously used cinnamon, clove, and oregano essential oils (EO’s) put with black seed oil in capsules. When I questioned herbalist Greg Lee on dosage, he agreed with my treatment of a total of 6 drops of EO’s taken twice a day. I never herxed or noticed any recognizable results on this treatment and relapsed on it. Lee spoke about liposomal oils years ago at an ILADS convention, but they were hard to find at the time.
I am currently using the liposomal form of oregano as part of my Bartonella treatment with (Rifampin/Clarithromycin). I’m hoping this combination works and has lasting results. The brand “Doctor Inspired Formulations” within the link can be found cheaper elsewhere, but they are all pretty expensive. I do not have a financial affiliation with anyone. Please note the other liposomal forms they create as well.
The 63-year-old star has dealt with Lyme disease for the last 20 years, ever since he was first bit by a tick.
“I think twice that I had it, I got bit twice and I probably had it four times over five years where it came back at the exact same time,” Baldwin told hosts Sean Hayes and Dr. Priyanka Wali during an appearance on their podcast Hypochondriactor.
Baldwin explained the onset of his symptoms: “August of one summer I was standing on my friend’s porch at night, and it was a cool evening – it wasn’t a hot steamy evening – and I felt literally this wave go over my back and over my shoulders and kind of wrap around me like a chill, and I got just attacked. It came like someone snapped their fingers and put a spell on me.”
The 30 Rock star said he was unable to get out of bed for several days after.
“This thing just attacks me and I wound up laying in my bed for three days sweating through my sheets and just this horrible joint pain and soreness and exhausted. I couldn’t even get up for like three days,” he said.
Boiling Point: The Lyme + Fibromyalgia + Chronic Fatigue Connection
by Dr. Bill Rawls
Updated 6/11/21
The misery of chronic illness is very real. But if you’re the one who’s suffering, you know that those around you typically can’t see it or understand it — not family, friends, or even medical providers.
They don’t know what it’s like:
…to push through oppressive fatigue day after day.
…to be tired beyond exhaustion but unable to sleep.
…to ache all over so badly that all you want to do is curl up in a ball inside a dark closet.
…to feel like you have the flu every day of your life but still have to go to work.
…to be isolated, both socially and professionally.
…to have bizarre symptoms that no one can put a finger on.
…to be told that all your lab tests are normal, even though something is obviously wrong.
…to become dependent on symptom-suppressing drugs prescribed by well-meaning doctors who didn’t know enough to know better.
I can relate better than most doctors because I’ve lived it. I am part of a growing epidemic of people suffering from chronic ailments that the modern medical system is at a loss to help.
An unexpected twist during my late 40s changed my life and career path forever. Unrelenting stress from a too-busy medical practice combined with an entanglement of unpredicted life stressors plunged me into chronic misery that took me 10 years to escape.
For one, they carry a stigma. Many Americans believe fibromyalgia and chronic fatigue are made-up excuses for getting out of work and other life obligations. This would help explain why people with fibromyalgia suffer for nearly a year on average before seeking treatment.
What’s worse, both of these conditions are considered disorders and not true diseases. Why is that significant? Because a disease is considered treatable, whereas a disorder is a label given to a collection of symptoms for which there is no known cause or treatment.
Doctors prefer treating illnesses that are easy to define and have known solutions. If you have something that’s difficult to define and has no known treatment, they don’t want to mess with it. I admit, I know the feeling: I’ve been confronted with patients who have a long list of seemingly unrelated symptoms, and when no tests pointed to a specific diagnosis, it was frustrating.
Then, I became the patient — I could almost sense my doctors roll their eyes the minute I came through the door.
To be honest, I didn’t completely fit the strict criteria for either fibromyalgia or ME/CFS — I had more muscular pain than you’re supposed to have for chronic fatigue, but I also didn’t have all the specific trigger points of fibromyalgia. I now know that’s the norm. Studies have shown that greater than 70% of people given the label of fibromyalgia don’t fit the strict criteria for the diagnosis, and similar for ME/CFS.
Diagnosis Break Down
The concept of “diagnosis” is artificial by nature — it’s simply a way to categorize an illness to define a treatment plan. It works well for acute illnesses, such as a broken leg, acute appendicitis, heart attack, stroke, acute pneumonia, or kidney stones, where the cause is well defined, and interventions exist specifically to address it.
However, the concept of diagnosis is often less functional when applied to chronic illnesses. The signs and symptoms of many chronic illnesses overlap, and the underlying causes are not straightforward. All too often, patients are left endlessly searching for the “right” diagnosis or end up with a diagnosis like fibromyalgia or ME/CFS.
Unfortunately, for most chronic illnesses, medical therapies are designed to artificially block symptoms or the progression of the condition. Patients end up in a state of managed illness and never get well. This is true not only for fibromyalgia and chronic fatigue but also for a range of other chronic illnesses, including autoimmune diseases, chronic Lyme disease, multiple sclerosis, Parkinson’s disease, and ALS.
Dissatisfied with symptom management alone, I decided to aggressively pursue healing. Along the way, I discovered I was carrying the bacteria associated with Lyme disease, Borrelia burgdorferi. At first, I was relieved. Finally, a “real” diagnosis! But after several rounds of antibiotics left me sicker than when I started, my presumptive diagnosis of Lyme disease generated more questions than answers. If I had Lyme, why didn’t antibiotics help?
The reason: Once the bacteria are buried deeply in tissues, testing is often inaccurate, and the bacteria are extremely resistant to antibiotic therapy. What’s more, there are many other bacteria that can cause Lyme disease-like symptoms, equally as resistant to antibiotics. And like me, many patients diagnosed with fibromyalgia and ME/CFS often end up finding out they are carrying the bacteria associated with Lyme disease.
After antibiotics failed and otherwise getting nowhere with the medical system, I decided to take things into my own hands. Somehow I knew that I was destined to figure this thing out — and if I was successful, I could help others who were suffering like I was.
But first, I had to rethink the concept of chronic illness as I was taught in medical school. Instead of studying how to label and inhibit disease (mostly with drugs), I was searching for answers as to why chronic illness happens in the first place. Deep down, I felt that chronic Lyme disease, fibromyalgia, and ME/CFS were somehow related, and these and many other chronic illnesses shared common root causes.
It wasn’t an overnight revelation; it took years of intense research and deep introspection. My search began with an extensive review of human biochemistry, physiology, and pathology.
“Many patients diagnosed with fibromyalgia and ME/CFS often end up finding out they are carrying the bacteria associated with Lyme disease.”My conclusion?
Wellness boils down to one thing: the health of the cells of your body.
Healthy Cells Equal a Healthy Body
The human body is a complex collection of living cells. When all the cells in the body are healthy and working in unison, you feel well. Symptoms occur when cells are stressed. Sometimes the symptom points to the source of stress: for example, joint pain indicates that cells in the joints have been taxed or injured. Symptoms like fatigue, however, suggest that cells throughout the body are overburdened, and communications that unify cellular functions have been compromised.
Fortunately, cells can recover from being stressed; it’s what healing is all about. Cells can repair internal damage, and even when they’re injured beyond repair, other cells in the body can divide to make replacements (some cells do this better than others: skin cells have the highest potential in the body to regenerate and nerve cells have the lowest potential). That is, if the stress resolves or is relieved.
Chronic illness occurs when stress never resolves, and our cells don’t get a chance to recover from being overworked. There are many different chronic illnesses because different cells in the body can become chronically stressed in different ways.
The immune system plays an enormous role in the healing process. It’s responsible for removing old and abnormal cells, cleaning up cellular debris and dead microbes, clearing foreign substances from the bloodstream, and purging toxins from the body. During chronic illness, cellular turnover is increased to the point that the immune system becomes overtaxed. When the immune system can’t do its job, all cells in the body suffer.
It becomes a vicious cycle that increases cellular stress throughout the body and intensifies the process of chronic illness.
So, What Stresses Cells?
The factors that stress or threaten cells are intimately tied to the fact that we must interact with the surrounding environment to survive. The nutrients, water, and oxygen that cells need to thrive must come from outside the body. This mandatory interaction with the outside environment poses a variety of different risks to cells of the body.
All totaled, there are five categories of factors that can stress cells of the body and lead to chronic illness.
5 Cellular Stress Factors
#1 Unnatural diet: To function properly, cells require carbohydrates and fats to generate energy, amino acids to make proteins, and a wide spectrum of nutrients, including vitamins and minerals, all of which must be extracted from food by the intestinal tract. Though humans can tolerate a wide variety of foods, if the right balance of nutrients isn’t present, then cells suffer. It’s not just deficiencies of nutrients that cause problems; the gross excess of carbohydrates and refined fats that have become signatures of the modern diet is extremely damaging to cells.
The type of food you eat also influences how well the digestive system works; the intestinal tract requires dietary fiber and a healthy balance of bacteria to function properly. Carb-loaded processed food causes overgrowth of bacteria, which compromises the intestine’s protective barrier. This allows foreign proteins and bacteria to leak across the gut-blood barrier, which sends the immune system into overdrive, causing fatigue, brain fog, flu-like symptoms, and other symptoms.
#2 Toxic environment: Though toxic substances have always been present in the earth’s atmosphere, our modern environment has become inundated with unnatural chemicals that are toxic to all lifeforms. Toxic substances in water, food, and air, or those that come in contact with skin, have the potential to disrupt biological processes of cells directly or impede communications (hormones, neurotransmitters), which interferes with all cells in the body.
Beyond toxic chemicals, the modern sea of artificial radiation generated by cell phones, computers, microwave transmission towers, and hundreds of other sources can disrupt cellular functions.
#3 Chronic mental stress: The complexities of 21st-century life cause a certain level of pervasive, low-grade tension. Continually remaining in high-alert mode hampers all communication systems in the body. Eventually, the body and cells begin to break down. Chronic stress also disrupts normal sleep — a necessity if cells are to have downtime to recover from being stressed. Normal health is not possible without adequate sleep.
#4 Sedentary lifestyle: Until about 100 years ago, physical stress would have been characterized by excessive physical labor. Today, the opposite is true. Modern life, however, requires little in the way of physical effort. Increased blood flow associated with physical activity flushes debris and metabolic waste that has collected around cells. It’s such an integral part of cellular health that being sedentary is extremely detrimental. Without regular movement, everything in the body stagnates, toxic substances accumulate, muscles turn to mush, arteries become clogged, and cell loss is increased.
#5 Microbes: We share our bodies with trillions of microorganisms known as the microbiome; by numbers alone, they outnumber our cells 10:1. The list includes 20-40 thousand different species of bacteria but also protozoa, fungi, multicellular parasites, and an untold number of different viruses. Though we have a mutually beneficial relationship with most of our microbes, some aren’t so friendly. Beyond that, foreign microbes from the outside are constantly trying to get inside the body.
They all want food — the carbohydrates, fats, proteins, vitamins, and minerals that make up our cells provide everything that microbes need to make more microbes. Therefore, infection is simply microbes trying to get inside your body to consume your cells.
Microbes: A Key to Chronic Illness
The vast majority of microbes that inhabit the body are confined to the gut, skin, and body openings. Technically, however, these microbes are outside the tissues of the body. Because all microbes have the potential to consume our cells, the body maintains barriers to keep them out. The primary barriers include:
Skin
Mucous membranes lining the mouth and nasal passages
Bronchial passageways in the lungs
Linings of the stomach and intestinal tract
In other words, even though our microbes are part of us, they are kept apart from the cells that make up our tissues because of the potential to do us harm. Of course, certain microbes have a higher potential to cause harm than others.
The microbes with the lowest potential for harm are defined as normal flora. Normal flora are microbes that your immune system knows better than any others — it’s a relationship that has been honed over millions of years. Because the immune system is able to keep these microbes completely in check, the partnership is mutually beneficial.
We depend on our normal flora to keep other, more aggressive microbes in the gut and on the skin suppressed. Intestinal and skin diseases result when the balance of normal flora is disrupted by poor diet, chronic stress, or antibiotic therapy.
Because the barriers of the body aren’t nearly as secure as you might hope, you rely on your immune system to protect your cells from pathogens that get through. Without protection from the immune system, your cells are defenseless.
Studies over the past decade, however, have shown that microbes regularly trickle across barriers. This means the immune system must constantly stay on guard to protect cells. Beyond that, microbes from the outside are constantly trying to cross barriers to get inside the body.
Case in point: Every time you get bitten by a tick, mosquito, or flea, are nipped or scratched by a dog or cat, scrape or cut your skin, put your fingers in your mouth or your nose, hug or kiss another person, have sex, use a public toilet just after someone else has been there, take a breath just after someone sneezes, swim in a natural pond, lake, or river, or consume any food or beverage — foreign microbes enter your body.
A microbe that can do us harm is called a pathogen. The potential of a pathogen to do harm is more about the relationship our immune system has with a particular microbe than the microbe itself.
Of course, there are varying degrees of pathogens; some are more threatening than others. A microbe like the Ebola virus is so dangerous because humans have rarely been exposed to it. Therefore, we don’t have built-in immunity to it. When Ebola crosses barriers into tissues, it’s able to ravage cells of the body.
Fortunately, most of the foreign microbes you will be exposed to during your lifetime are low-grade pathogens. They are well known to your immune system, and, if your immune system is healthy, they have a low potential to cause you harm.
But if your immune system becomes compromised, low-grade pathogens can also be problematic to you. Certain microbes have adopted stealth as a primary strategy for evading immune functions. First, they enter your bloodstream. Then, they hitch a ride inside white blood cells to all tissues throughout the body — muscles, joints, heart, organs, intestines, and even the brain and nervous system. Termed intracellular microbes, they’ve adopted the ability to live inside cells by cannibalizing them for nutrients to survive and make new microbes. When that cell is used up, they emerge to infect other cells.
Beyond borrelia, there are many known microbes that fit the description of being intracellular, and many more yet to be discovered. Mycoplasma, bartonella, chlamydia, and babesia are a few well-known examples, and coinfections with these microbes are common in people with Lyme, fibromyalgia, chronic fatigue, and other chronic illnesses.
Despite intracellular microbes’ manipulative ways, your immune system is well versed in all of their tricks. It evolved over millions of years from repetitive exposure to many thousands of microbes, and each encounter was recorded in your genes for future reference. The better your immune system “knows” a microbe, the better it is able to slow its growth rate and maintain ultra-low concentrations in tissues.
Notice I didn’t say the microbes are eradicated. They are very good at persisting. A much more common outcome is a stalemate in which the stealth microbes are marginalized, and their potential for harm is minimized (their natural aggressiveness is kept in check). But they can stay alive and dormant deep in tissues for a lifetime without you ever knowing they are there.
Though science is just starting to understand the role that stealth microbes and other opportunistic pathogens play in the microbiome, one fact is quite clear: Everyone, even the healthiest of us, harbors a variety of intracellular microbes that are low-grade pathogens. As long as your immune system is healthy, you’ll never hear from them.
But cells overwhelmed by poor nutrition, toxic environment, chronic mental stress, and sedentary lifestyle become more vulnerable to invasion by intracellular pathogens. Increased cellular turnover and increased microbe activity overtaxes the immune system. At a certain point, a threshold is crossed, such that symptoms occur.
Impaired immune function allows the microbiome to shift off balance and pathogens in your tissues and gut to flourish. It’s not just one microbe that becomes activated, but all the questionable suspects — stealth microbes that have been dormant in tissues, pathogens in the gut and on the skin, and viruses in tissues such as Epstein-Barr virus(EBV) and cytomegalovirus (CMV), setting the stage for chronic illness. The associated symptoms result from the immune system’s reaction to the microbes and the damage the microbes inflict upon the cells directly.
When Symptoms Boil Up
You can think of it as a pot of water on the stove that starts out over a low simmer. As the simmer increases, minor discomforts start showing up — general body aches and joint stiffness; bloating, gas, and digestive issues; lack of energy; and simply not feeling well. Often, these kinds of changes become accepted as part of aging or life in general.
It’s not until the pot is fully boiling over that things become noticeably uncomfortable. Sometimes it’s a specific event that causes the pot to bubble over — severe emotional stress, an accident or trauma, an acute viral illness, or even a tick bite. But most often, it’s a perfect storm of cellular stress factors accumulating over time until a tipping point is reached.
At that point, the immune system can no longer keep a lid on things, and life becomes miserable. I refer to this as Chronic Immune Dysfunction.
What Chronic Immune Dysfunction Looks Like
Typical Chronic Immune Dysfunction (CID) symptoms include fatigue, decreased stamina, stress intolerance, feeling flu-like, muscle pain, joint pain, and sleep disturbances. Also common are temperature fluctuations, digestive dysfunction, mood changes, brain fog, skin rashes, a range of neurologic symptoms, and allergic-type reactions.
If you hadn’t already guessed, the default diagnosis for this morass of symptoms is fibromyalgia, when pain is the primary symptom. Or, if fatigue predominates, it’s labeled myalgic encephalomyelitis/chronic fatigue syndrome. Both are conditions, not diseases, and thus, are considered to have no known cause or treatment by the conventional medical community.
If a patient presenting with CID symptoms has any history of tick exposure, some providers may consider the possibility of Lyme disease. On the surface, this might seem like a much more attractive diagnosis than fibromyalgia or chronic fatigue because it has a recognized cause (infection with a microbe), which implies a condition is treatable with antibiotics.
Unfortunately, this only applies to acute Lyme infection. Chronic Lyme disease is actually another consequence of CID, in which immune reaction is dysfunctional, and the entire microbiome is disrupted. Concentrations of borrelia are low and embedded deep in tissues where antibiotics can’t reach them. As a result, treating chronic Lyme isn’t much different from treating fibromyalgia or ME/CFS.
When you consider the cause of all three of these chronic illnesses, the concept of diagnosis becomes practically irrelevant. Instead of being entirely separate illnesses, they are all very likely just different variations of the pot boiling over.
Indeed, all chronic illnesses — fibromyalgia, ME/CFS, chronic Lyme disease, and even more definitive diagnoses such as Parkinson’s disease, multiple sclerosis, ALS, and autoimmune diseases — share an association with Chronic Immune Dysfunction.
What types of illness you end up with during your life is dependent on three factors:
Genetics: Your genes define your risk of different illnesses, but not whether you will actually get those illnesses.
How cellular stress factors come together to disrupt immune system functions.
Which intracellular microbes you pick up through life. Because intracellular microbes have a preference for certain cells of the body, the various combinations of these microbes give rise to different chronic illnesses. In other words, when it comes to defining the spectrum of chronic illnesses, microbes are the wild card.
When chronic illness is considered as a “pot boiling over” problem, the best solutions are directed toward decreasing cellular stress factors to restore normal immune system functions and balance in the microbiome, instead of treating symptoms alone. Take this route, and wellness becomes a reachable endpoint, as opposed to living in a chronic state of managed illness. Here’s how to get from here to there.
Real Solutions for Chronic Immune Dysfunction
I divide options for overcoming illnesses associated with Chronic Immune Dysfunction and stealth microbes into two categories: Heroic Therapies and Restorative Therapies.
A third category of solutions, Symptomatic Therapies, is best reserved for acute relief. Specifically directed at controlling symptoms, Symptomatic Therapies come mostly in the form of prescription drugs and contribute only minimally to healing and wellness.
Heroic Therapies
Heroic Therapies have significant limitations. They include single-agent chemical warfare (antibiotics), oxidative therapies (ozone, hyperbaric oxygen), rife machines, and any other therapies directed specifically at killing pathogens. But stealth microbes hide in protected niches in the body, occur in low concentrations, and typically grow very slowly, so they are extremely hard to eradicate with antibiotics.
In fact, keeping stealth microbes at bay is just about impossible without restoring normal immune function. When people do get better with heroic therapies, it’s only because microbes are suppressed enough to allow rebound of immune function to get a handle on things, not because the heroic therapy eradicated the microbes completely. And sometimes, heroic therapies can suppress immune function further and actually make the person more ill.
Ultimately, where you want to be is with a healthy immune system keeping all stealth microbes well marginalized, so harm is minimized and you can enjoy a normal, vibrant life. Restorative Therapies are the best way to get you there. They focus on minimizing Cellular Stress Factors to optimize immune function and restore homeostasis (natural balance in hormone and healing systems in the body), as well as killing or suppressing microbes.
Restorative Therapies
With Restorative Therapies, the ability of the body to heal itself is restored, along with the ability of the immune system to control any threatening microbes in the margins. This approach takes time and patience, but because it has such low potential for harm, it can be followed for a lifetime.
A comprehensive restorative program includes the following essential components:
Balance your microbiome with herbal therapy. Take synergistic herbal therapy to suppress microbes, promote microbiome balance, and help counter the other cellular stress factors.
Herbal therapy is the cornerstone of any restorative approach. Over millions of years of evolution, plants have developed an impressive array of phytochemicals that offer very sophisticated biochemical solutions to the same stress factors that threaten our health, including every variety of microbe, free radicals, toxins, radiation, physical stress, and maybe even emotional stress.
Medicinal herbs are plants that mesh particularly well with human biochemistry. Evidence supporting herbal therapy includes historical information from traditional use by every culture on earth, population studies of current use, lab-based studies, animal studies, and human studies. All totaled, we know more about medicinal herbs than any other therapy currently available, including all drugs.
Here are just some of the benefits of natural herbal therapy for overcoming all sorts of chronic illness:
Balances the microbiome by suppressing intracellular microbes and supporting normal flora
Supports normal immune function
Reduces immune messengers stimulated by stealth microbes that cause inflammation
Restores homeostasis (balances hormones and supports healing systems in the body)
Nourish your body. A healthy diet for immune system support should focus on whole foods, ample vegetables that are rich in phytochemicals (beneficial plant chemicals that support your body’s systems and functions), and healthy fats. Keep processed foods, grain-fed meats, excess carbohydrates, and unhealthy fats to a minimum, and fill at least 50% of your plate with veggies.
Purify your environment. Reduce your exposure to environmental toxins whenever you can. Opt for organic foods when feasible, filter your water and air, and choose non-toxic cleaning supplies and beauty products.
Calm your mind. Adopt some daily stress reduction and management techniques such as practicing meditation, doing yoga, walking outdoors, or even napping.
Activate your body. Doing gentle, restorative exercise every day helps keep the body moving and counters the modern-day pitfall of being too sedentary.
The Bottom Line
Natural herbal therapy combined with the other Restorative Therapies — healthy diet, detox, stress management, and regular exercise — is the best countermeasure for the cellular stress factors that impair immune function and make us vulnerable to chronic illness. It wasn’t until I embraced them that I was able to begin crawling out of the deep dark well of chronic illness.
Since then, I’ve used everything I learned on my journey back to health to create a holistic and herbal protocol that simplifies the process of reversing Chronic Immune Dysfunction. I also chronicled the exact steps I took to recover in my book, Unlocking Lyme.
I hope these resources can serve as a guiding light to those who need them. But none of it works unless you remember this: Your body is naturally powerful. It possesses the inherent ability to overcome chronic illness and fend off future illness. Clear the path of obstacles, and you will empower your body to find its own way to optimal wellness.
Dr. Rawls is a physician who overcame Lyme disease through natural herbal therapy. You can learn more about Lyme disease in Dr. Rawls’ new best selling book, Unlocking Lyme.
You can also learn about Dr. Rawls’ personal journey in overcoming Lyme disease and fibromyalgia in his popular blog post, My Chronic Lyme Journey.
REFERENCES
1. Potgieter M, Bester J, Kell DB, Pretorius E. The dormant blood microbiome in chronic, inflammatory diseases. FEMS Microbiol Rev. 2015;39(4):567-591. doi: 10.1093/femsre/fuv013
2. Walitt B, Katz RS, Bergman MJ, Wolfe F. Three-Quarters of Persons in the US Population Reporting a Clinical Diagnosis of Fibromyalgia Do Not Satisfy Fibromyalgia Criteria: The 2012 National Health Interview Survey. PLoS One. 2016;11(6):e0157235. Published 2016 Jun 9. doi: 10.1371/journal.pone.0157235
Lyme disease is the other pandemic that has been ignored. Tick season and an increase in Lyme disease cases in the next few months will be difficult to discern from COVID-19. Plus, many hospitals have reported running out of doxycycline during COVID-19, which is the number one medication that is used for lyme disease… All of this will skyrocket cases of lyme and make it even harder to treat and diagnose.
· Lyme Disease is a silent pandemic
· Estimates suggest that over 1 million people suffer from chronic Lyme disease
While the county races to find a cure for COVID-19 in record time, lyme disease treatment and testing lag behind in comparison.
We are living through what many would consider our first real pandemic in our lifetime. However, I would argue that we have been in the midst of a global epidemic of Lyme disease for over twenty years.
Lyme disease has been underreported and misunderstood since the first case was diagnosed in 1975 in Old Lyme, CT. While we watch the rapid scientific discoveries come to light regarding COVID-19, I become more aware of the paucity of new data for Lyme disease.
In a matter of months, we have seen a rapid response to the development of tests for COVID-19 PCR and antibodies (with room for improvement), but in the 39 years since the bacteria that causes Lyme disease (Borrelia burgdorferi) was identified, we are still incredibly behind in diagnostic testing, as well as treatment strategies and prevention.
While we are engaged in the battle with one infectious disease, we have the opportunity to reflect on other infectious diseases, specifically Lyme disease and co-infections, such as Babesia, Bartonella and other tick-borne infections. Tick-borne infections are on the rise and increasing exponentially with some research indicating that there are approximately 300,000 new cases of Lyme disease each year.
This increase in cases is due to a number of factors. The tick population, as a whole, has exploded as a result of global temperature increases, which in the last few years has led to shorter winters that allow adult ticks to continue to thrive. In addition, ticks have expanded their range as their hosts, the white-footed mouse and deer infiltrate into more heavily populated areas.
Every year, as the number of ticks increase, so do the number of diseases that each tick can carry. Research from July to October 2019 in upstate New York showed that 32% of the ticks carried at least one infection, primarily Lyme disease. This number was higher than expected. 3% of the ticks also carried multiple diseases or co-infections.
Each tick-borne infection carries their own risks. Some are deadly, like Powassan, some present acutely but are easily treated if found early, such as Ehrlichiosis, and others vary dramatically in their presentation and ease of treatment. The reality is that with Lyme disease, many patients that are infected are diagnosed and treated early, can make a full recovery.
However, about 10 to 20% of patients may have persistent symptoms that become chronic. There is very little data about chronic lyme disease and many believe that these patients have PTLDS (post-treatment Lyme disease syndrome), which implies that the patient’s symptoms are due to something other than continued infection. Similarly, COVID-19 seems to cause persistent or relapsing symptoms in some patients long after the initial infection.
Understanding our immune system’s response to one infection might, in fact, benefit our understanding of others.
People are justifiably fearful about getting infected with COVID-19. It’s a new virus. We don’t know that much about it, but it seems that every day we slowly gain insight into how this virus works. What is most astonishing is the tremendous variability in presentations that patients with COVID-19 have. No two patients are alike.
We are seeing some patients with mild respiratory symptoms and others with severe symptoms requiring intubation. We are seeing patients present with large blood clots, like pulmonary embolisms or strokes. We are seeing patients with other vascular symptoms, such as “COVID toes.” Some patients have gastrointestinal symptoms. Fever was initially thought to be a hallmark feature of the viral infection, but the data shows that less than 50% of patients with COVID-19 develop a fever at presentation.
The medical field is starting to understand the importance of keeping an open mind and that “no two patients are alike.” This approach sounds incredibly familiar to those of us who treat patients with Lyme disease, but unfortunately, it has not necessarily been embraced by the medical establishment until now.
Lyme disease is similarly inconsistent.
Lyme can present early with classic symptoms of a bull’s eye rash, fever, headache and muscle aches but less than 50% of patients present in this manner and even when there is a rash it often doesn’t resemble a bull’s eye. Many patients don’t even remember getting bitten by a tick, so Lyme disease can go undetected during the early stages until it infects major organs. It can damage the heart, the nervous system, joints, and many other parts of the body.
Lyme is a multisystemic disease with great variability that is not often recognized by doctors which, unfortunately, leaves many patients without an accurate diagnosis and without proper treatment. COVID-19 also causes multisystemic inflammation, but this phenomenon has been well accepted by medical professionals.
You don’t see COVID-19 patients being stigmatized as Lyme patients often are. Lyme disease can cause debilitating symptoms such as fatigue, headaches, joint pain, and brain fog, and yet on the outside these patients can look completely normal. This leads those around them, including their doctors to doubt the severity of their illness. They may be labeled as “crazy.” We often refer to diseases like Lyme as invisible illnesses, because they are invisible on the outside but devastating to the patient on the inside.
This is the spring when the trees are blooming, the grass is growing, and the ticks are out in droves, raising the concern for the potential of a significant rise in Lyme disease cases. This year might, in fact, be worse than previous years due to the relatively warm winter, which allowed ticks to continue thriving. I believe SARS-COV-2 might play an even larger role in the potential increased incidence of Lyme disease. While we remain isolated at home and practice social distancing, the beautiful weather will send more people outdoors. Some will stay in their backyard and others will venture out onto hiking trails. Some have new puppies or dogs that need to be exercised outdoors and others will embrace growing their own food and gardening.
What precautions are people taking before going outside? I know many will don masks in case they run into other people. I think some people will remember to put on sunscreen or wear a hat to prevent a sunburn.
How many people will remember to protect themselves from insect and tick bites with insect repellant?
How many will remember to do tick checks when they come indoors?
I fear that our shift towards COVID-19 prevention may shift the focus away from Lyme disease prevention. This could lead to an escalation in tick bites and new infections.
There is real danger from getting bitten by a tick. There is, no doubt, real danger from getting infected with SARS-COV-2, too. Both pose serious risks and both present challenges to treatment. For months preceding the pandemic, we had been seeing an increasing number of drug shortages. Certainly, since the pandemic, this situation is worse. As soon as a drug is found to have activity against COVID-19, people begin to stock-pile and the supply dwindles quickly.
Unfortunately, some of these drugs that are in limited supply are used as first and second-line treatment against Lyme and co-infections, such as doxycycline and hydroxychloroquine. Lyme disease that is not adequately treated can leave long lasting, chronic sequelae that may be irreversible. This is not acceptable. Why? Because it is not acceptable to watch people suffer and potentially die from infections that are treatable just because the medications are not available due to manufacturing issues and stockpiling.
Lastly, as we start to see a rise in Lyme disease, not only will we have great difficulty with treatment, but I suspect diagnosis may be delayed due to the overlap in symptoms with COVID-19 in the early stages. I urge everyone to be on alert. Check yourself, your children and your pets for ticks. Use appropriate insect repellants but also use caution avoiding heavily wooded areas, areas with high grass and shrubs, leaf piles and wood piles, and other high-risk areas. Alert your doctor if you get a tick bite or develop fever, achiness, headache or other non-specific symptoms. Of course, it could be COVID-19, but it could also be something else.
THE SOLUTION:
We cannot ignore other potentially dangerous conditions and we must not assume that everything is COVID-19. I strongly urge doctors to keep Lyme disease and other tick-borne infections on their differential diagnosis list. While our country, our scientists and our medical professionals work towards control of the COVID-19 pandemic, let us not forget the silent pandemic of Lyme disease.
Lyme disease is found in every state in the U.S. and every continent in the world, except for Antarctica. The incidence and prevalence of the infection increases each year. Based on the assumption that at least 20% of patients experience treatment failure, we currently have over 1 million people in the U.S. with chronic Lyme disease and this does not include many who are undiagnosed, yet suffer the debilitating consequences.
Despite these growing numbers, naysayers still believe that Lyme is very easily treated and not a significant public health problem. That couldn’t be further from the truth. There are very loud voices championing Lyme disease research and education and yet their voices are muffled by those that don’t recognize that we are dealing with a global health issue that is expanding its reach every year.
Once we gain control over the immediate COVID-19 pandemic, I truly hope we use what we have learned and apply the same sense of medical urgency to Lyme disease and other tick-borne infections.
The destruction of Covid-19 is visible. The destruction and multisystemic effects of lyme disease is not. Just because you cannot see the destruction, does not mean it is not there. It is time we treat invisible illness with as much urgency as we treat visible illness in this country.
The economic impact of the effects of chronic lyme disease.
Lyme disease costs approximately $1.3 billion each year in direct medical costs in the United States, but this is likely a gross underestimate that doesn’t consider the full economic and societal costs. Some have proposed the cost to be closer to the $50- to $100-billion-dollar range. The numbers are even more staggering when we look at individual patients and what the cost is to them, not just financially but also in quality of life.
On average, Lyme patients might see 10-30 or more doctors before being properly diagnosed. Some of the costs might initially be covered by their insurance but as time goes on and their condition worsens, patients often need to do more extensive testing and see doctors outside their insurance plan, who have a specific interest and passion in treating complex, chronically ill patients. Lyme disease is a complex, multisystemic illness that is difficult to detect due to the lack of sensitive test and the way it evades the immune system, wreaking havoc before it’s discovered. The current medical model does not allow doctors to spend enough time with patients, which leads to misdiagnoses and even false labeling, that is not easily reversed.
Because the symptoms are so diverse and involve so many different parts of the body, including the nervous system and the brain, doctors have a hard time piecing the symptoms together.
Unfortunately, these patients are at risk for being labeled with a functional psychiatric disorder like anxiety, depression or OCD, and are often sent for psychiatric evaluation, which further delays them from receiving proper treatment for Lyme disease. We know that Lyme can cause neuropsychiatric illnesses, but this needs to be recognized as a consequence of the Lyme and treated as such.
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**Comment**
This article was written before the good news of successful COVID treatments. HCQ, zinc, azithromycin, and Ivermectin have all shown fantastic results, along with numerous natural treatments. Doctors have been writing about their clinical success using these treatments for months and months but now have clinical studies supporting their success.
The ‘powers that be’ continue to malign, deny, and censor this important information.
Dr. Alan MacDonald, a retired M.D. and board certified in Anatomic Pathology and Clinical Pathology. This revealing interview from May 2013 covers many of the controversies associated with Lyme disease:
Part 1 – Chronic lyme disease
– Alzheimer’s and Lyme disease: microscopy and culturing brain tissue
– How Borrelia changes and survives within the human host
– The many strains and variations in Borrelia, how this relates to flawed testing
Part 2Brains and eyes as infection sanctuary sites
-Cloaking of spirochetes in complementary proteins
Our documentary on biofilms, Why Am I Still Sick, now available in French, Spanish, Simplified and Traditional Chinese: http://www.whyamistillsick.com/
patients can test negative but still be infected (seronegative Lyme).
They also cultured EM biopsies for antibiotic sensitivity studies to determine the most effective antibiotics.
They also did drug level studies and found CDC/IDSA recommendations don’t work for many as they don’t give detectable blood levels of antibiotics (which means the antibiotics aren’t effective). Some people need higher doses and treatment is not a “one size fits all.” This is important because the CDC/IDSA guidelines are setting patients up for severe chronic Lyme as these surviving pathogens mutate into something that will become treatment resistant.
The website of the scientific journal that published our article was so severely hacked that it stayed offline for three years. Once it came back up, our article had dissapeared.
The hacking of the Journal ‘Biological and Biomedical Reports’ seems to be done with a person knowing more than my closest enemies. And was someone with access to a quite advanced compilator system. Why this was done might well have been political or personal prestige.
#1 Unnatural diet: To function properly, cells require carbohydrates and fats to generate energy, amino acids to make proteins, and a wide spectrum of nutrients, including vitamins and minerals, all of which must be extracted from food by the intestinal tract. Though humans can tolerate a wide variety of foods, if the right balance of nutrients isn’t present, then cells suffer. It’s not just deficiencies of nutrients that cause problems; the gross excess of carbohydrates and refined fats that have become signatures of the modern diet is extremely damaging to cells.
#2 Toxic environment: Though toxic substances have always been present in the earth’s atmosphere, our modern environment has become inundated with unnatural chemicals that are toxic to all lifeforms. Toxic substances in water, food, and air, or those that come in contact with skin, have the potential to disrupt biological processes of cells directly or impede communications (hormones, neurotransmitters), which interferes with all cells in the body.
#3 Chronic mental stress: The complexities of 21st-century life cause a certain level of pervasive, low-grade tension. Continually remaining in high-alert mode hampers all communication systems in the body. Eventually, the body and cells begin to break down. Chronic stress also disrupts normal sleep — a necessity if cells are to have downtime to recover from being stressed. Normal health is not possible without adequate sleep.
#4 Sedentary lifestyle: Until about 100 years ago, physical stress would have been characterized by excessive physical labor. Today, the opposite is true. Modern life, however, requires little in the way of physical effort. Increased blood flow associated with physical activity flushes debris and metabolic waste that has collected around cells. It’s such an integral part of cellular health that being sedentary is extremely detrimental. Without regular movement, everything in the body stagnates, toxic substances accumulate, muscles turn to mush, arteries become clogged, and cell loss is increased.
#5 Microbes: We share our bodies with trillions of microorganisms known as 
Balance your microbiome with herbal therapy. Take synergistic herbal therapy to suppress microbes, promote microbiome balance, and help counter the other cellular stress factors.
Nourish your body. A healthy diet for immune system support should focus on whole foods, ample vegetables that are rich in phytochemicals (beneficial plant chemicals that support your body’s systems and functions), and healthy fats. Keep processed foods, grain-fed meats, excess carbohydrates, and unhealthy fats to a minimum, and fill at least 50% of your plate with veggies.
Purify your environment. Reduce your exposure to environmental toxins whenever you can. Opt for organic foods when feasible, filter your water and air, and choose non-toxic cleaning supplies and beauty products.
Calm your mind. Adopt some daily stress reduction and management techniques such as practicing meditation, doing yoga, walking outdoors, or even napping.
Activate your body. Doing gentle, 
Madison Area Lyme Support Group 