October 16, 2019
This next case study is of an 18-year-old female who was adopted at the age of 5. Her adoptive mother described her as a malnourished premature baby who eventually received good foster care. This young lady was diagnosed with a growth hormone deficiency that was left untreated in her country of origin at the age of two. By the age of five, she was adopted and moved to the US with her American family. She was fully immunized twice, diagnosed with hypothyroidism and inadequate growth. By this time, an Endocrinologist was onboard and treating her thyroid and growth deficiencies. She seemed to rebound, reaching puberty by the age of 13. Life was stable for some time until January of 2016. She was nearly sixteen years old and developed sudden neuropsychiatric symptoms with acute confusion, severe obsessive-compulsive disorder, frequent urination, insomnia, auditory hallucinations, severe sensory issues, leg tremors and eventually catatonia. Given her acute changes, her mother rushed her to the Emergency Room for evaluation. EEG was negative and she was hospitalized for apparent acute psychosis treated with Risperdal and Ativan.
After her hospitalization she followed up with a well-known Neurologist who identified positive Mycoplasma and initiated a course of Azithromycin. By the fourth dose she began to return to her normal state and began sleeping again. She was treated for over a month with antibiotics and seemed stable.
There was a great deal of stress in the family, a close family member died and within two weeks she developed new onset grand mal seizures while sleeping. Another ER visit with a normal EEG at the time determined perhaps the stress and trauma of her family member’s death may have triggered the event.
In January 2018 she had another grand mal seizure early in the am. Her neurologist began medications to address. She had no additional seizure activity but noted increasing anxiety. By December 2018 she suffered another grand mal seizure.
Further evaluation by the neurologist showed negative Lyme screening only, viral panels negative, tick-borne co-infections were not obtained, thyroid studies, electrolytes and inflammatory markers were all within normal limits.
This patient presented to me in February 2019. Upon further evaluation she was found to have progressive muscle weakness, cognitive dysfunction ongoing psychiatric symptoms, tremors and noted random striae or “stretch-marks” that would appear and disappear all over her body. She stated that this had occurred since the age of fourteen. She admitted several evaluations with psychiatric acute hospital admission for escalating neuropsychological symptoms that included visual and auditory hallucinations, compulsions, rage, emotional lability, delusions, anxiety as well as the ongoing physical symptoms. Neuropsychological meds were ineffective. The patient upon presentation was taking high dose Depakote, gabapentin and folic acid to control her seizure activity.
Initial lab work up at my office showed an IGM positive Bartonella Henselae, Lyme Western Blot with an IGM indeterminate band 23-25 and IGG positive bands 18,23-25,28,31,34,39,41,45,and indeterminate bands 58 and 66. She also showed IGG positive Rickettsia and Anaplasma. She carried one copy of MTHFR A1298C and had significant GI bacteria overgrowth with Streptococcus, Citrobacter, Proteus and Bacillus.
She was started on a course of Azithromycin and Bactrim as well as biofilm busters and herbals. Two months later she reported significant improvements noting striae lightening, energy improvements, mood stability, resolution of hallucinations, and her sleep was improving. She noted ongoing body and hand tremors as well as struggles cognitively with word finding but was back in school full time.
We decided to continue the treatment course and repeat her bloodwork in two months as well as continue follow up with her Neurologist to monitor. By June the patient was feeling great. She began a Depakote wean with her Neurologist and graduated High School.
Her lab results showed improvements with Bartonella levels as well as GI bacterial overgrowth. Rickettsia antibodies lingered unchanged as did Lyme bands. I added to her regimen Doxycycline and Cefdinir as well as an antifungal and supportive herbals to prevent yeast.
This patient is still a work in progress, however what is important to note is her complete reversal of the neuropsychological symptoms once antibiotics were initiated as well as the ongoing, successful wean of seizure medications.
Bartonella and Rickettsia infections both have an affinity for the central nervous system. It is challenging to identify given their non-specific symptom presentation at times. Rickettsia isn’t well understood regarding brain parenchyma and central nervous system transmission. We know in mouse studies, Rickettsia and Bartonella both contribute to neuroinflammation which can contribute to acute psychological symptoms. We see this type of neurological process in classic PANS patients related to strep. Although I see the trend clinically, I don’t feel that autoimmune encephalopathy related to tick-borne infections in children and young adults is well documented.
My hope is thru case study presentations you’ll connect real world, everyday struggles of these vulnerable patients with the disease process. I strongly feel further exploration of autoimmune encephalopathy as it relates to Lyme and other Tickborne illnesses in pediatrics should be a collaborative effort with mental health practitioners and welcome those interested to contact me.
https://reference.medscape.com/article/968385-treatment (Rickettsia treatment)
My guest for this episode is Dr. Armin Schwarzbach. Armin Schwarzbach, MD, PhD is a medical doctor and a specialist in laboratory medicine from the laboratory ArminLabs in Augsburg, Germany. Dr. Schwarzbach began by studying biochemistry at Hoechst AG in Frankfurt, Germany and pharmacy at the University of Mainz in Germany in 1984. In 1985 he studied medicine for 6 years at the University of Mainz and finished his MD in 1991. Dr. Schwarzbach developed the worldwide first Radioimmunoassay (RIA) for human Gastric Inhibitory Polypeptide from 1986 – 1991, getting his PhD in 1992. He is member of the Swiss Association for tick-borne diseases, the German Association of Clinical Chemistry and Laboratory Medicine, and the German Society for Medical Laboratory Specialists. He is an Advisory Board member of AONM London, England, and Board member of German Borreliosis Society, and Member and former Board Member of the International Lyme and Associated Diseases Society (ILADS) and has served as an expert on advisory committees on Lyme Disease in England, Australia, Canada, Ireland, France, and Germany. Dr. Schwarzbach is the founder and CEO of ArminLabs in Augsburg, Germany and has specialized in diagnostic tests and treatment options for patients with tick-borne diseases for over 20 years.
The content of this show is for informational purposes only and is not intended to diagnose, treat, or cure any illness or medical condition. Nothing in today’s discussion is meant to serve as medical advice or as information to facilitate self-treatment. As always, please discuss any potential health-related decisions with your own personal medical authority.
Chronic inflammatory demyelinating polyneuropathy (CIDP) is an autoimmune disease characterized by neurological symptoms and signs of progressive weakness, paresthesias, and sensory dysfunction. Other symptoms include reduced or absent tendon reflexes, cranial nerve involvement, autonomic symptoms, ataxia, and neuropathic pain. Unlike other autoimmune diseases, CIDP generally affects older individuals and has a male predominance. The onset is generally insidious and can take up to 8 weeks with a relapsing-recovery pattern. Like all autoimmune diseases, the etiology is multifactorial, with both genetic and environmental factors contributing to it.
Case reports of CIDP have found associations with multiple pathogenic organisms including Hepatitis B and C viruses, Bartonella henselae, Mycoplasma pneumoniae, Human immunodeficiency virus, Cytomegalovirus and Epstein-Barr virus. Possible antigenic self-targets include myelin protein 0, myelin protein 2, peripheral myelin protein 22, Connexin 32, and myelin basic protein. Antibodies targeting the Ranvier node proteins such as contactin-1, contactin-associated protein 1, and neurofascin 155 have been described. CIDP is treated with rehabilitation and pharmacological modalities. Pharmacological treatments target autoimmune dysfunction and include corticosteroids, intravenous immunoglobulin, subcutaneous immunoglobulin, plasma exchange, immunosuppressive and immunomodulatory agents such as methotrexate, cyclophosphamide, rituximab, and mycophenolate mofetil. Although there are few observational studies and randomized clinical trials with limited evidence supporting the use of immunosuppressive drugs, they are widely used in clinical practice. A comprehensive review of CIDP is presented herein in light of the autoimmune tautology.
It’s a bit of a head-scratcher to me why they call this an autoimmune disease when it’s associated with multiple pathogenic organisms. From everything I know – treat the infection and the symptoms improve: https://madisonarealymesupportgroup.com/2017/10/03/treat-the-infection-psychiatric-symptoms-get-better/
That’s not to say the immune system doesn’t need to be addressed.
Lyme/MSIDS treatment includes both aspects as well as detoxification and addressing imbalances within the body which requires supplementation with whatever is lacking.
It is common knowledge that immunosuppressive drugs worsen Lyme/MSIDS patients, so they need to be used scrupulously and along with antimicrobials or the pathogens are in an environment where they are allowed to thrive, ultimately worsening the patient’s condition.
Chronic inflammatory demyelinating polyneuropathy (CIDP) is a neurological disorder characterized by progressive weakness and impaired sensory function in the legs and arms. The disorder, which is sometimes called chronic relapsing polyneuropathy, is caused by damage to the myelin sheath (the fatty covering that wraps around and protects nerve fibers) of the peripheral nerves….It often presents with symptoms that include tingling or numbness (beginning in the toes and fingers), weakness of the arms and legs, loss of deep tendon reflexes (areflexia), fatigue, and abnormal sensations. CIDP is closely related to Guillain-Barre syndrome and it is considered the chronic counterpart of that acute disease.
The NIH link states the treatment is corticosteroids, but again, you’ve been warned that IF you have Lyme/MSIDS, that mono-therapy will make you worse.
Tingling, numbness, and stabbing pain are quite common in Lyme/MSIDS and many people with Epstein Barr (EBV) have misdiagnosed Lyme: https://madisonarealymesupportgroup.com/2017/04/11/diagnosed-with-ebv-had-lyme/
https://madisonarealymesupportgroup.com/2017/11/04/24514/ EBV – A Key Player in Chronic Illness.
Neuropathy is also common with Lyme/MSIDS: https://madisonarealymesupportgroup.com/2019/03/12/small-fiber-neuropathy-ptlds/
By Mira Carroll
Image Credit: Elaine Mays
Lyme pounced when I was vulnerable, in 2011, a year when I did a little too much. My immune system surely faltered under the weight of my normal workload, plus that of publishing my first book, and three significant trips — one to each coast and a third across the pond.
The overt assault started with a bad case of “the flu” on the tail-end of a week at a California retreat where deer (and likely, ticks) were ever present. The significance of this timing flew under my radar. In the aftermath, the microbes surreptitiously installed a fortress inside me, using weakness and prior injury for cover.
Around the same time, I had landed in menopause, the life stage I was calling my “less extreme youth,” and my whole body was starting to deteriorate. The diet and exercise habits I’d honed to stay slim stopped working, and I gained weight for no reason. Not a lot of weight, but noticeable on my small frame. It disturbed me, so I mentioned it at my annual physical.
The doctor opined that the only thing that works for women in my age bracket is extreme dieting and exercise. But I couldn’t fathom such a plan — I’d noticed I was experiencing more fatigue lately, and the mere mention of extreme exercise set off sirens in my joints. Besides, “extreme dieting” sounded unhealthy. My suspicions chimed in: Maybe I was just aging badly?
Still, aware of many sparkling, energetic oldsters, I knew the “just getting old” hypothesis had to be wrong. Until recently, I had enjoyed vibrant good health that I credit to several good habits. I kept my weight down, gave up smoking and drinking many years before, and exercised regularly. I had been a vegetarian for more than 35 years, and had stopped consuming most processed foods. I made sure to consume food and drink that also gave me pleasure — no cardboard food substitutes and nothing solely because “it’s good for you.” You could call it a dynamic, sustainable diet.
My work was fulfilling, too. As a massage therapist and spiritual counselor, I had the privilege of helping others find their way to feeling better. I was spiritual and had cultivated positive mental habits. I had close, supportive friends and beloved animal companions.
“I knew the ‘just getting old’ hypothesis had to be wrong.”
And yet my body no longer responded to this nurturing. Instead, I slowly got worse, with stiffening muscles, roving painful joints, creeping brain fog, and a shrinking capacity for stress of any kind. Things I’d been able to take in stride became more irritating, and my fuse felt perilously short.
Soon other symptoms mushroomed: seasonal allergies, and an allergy to some preservative in multiple eye products. Persistent floaters. Difficulty fully emptying my bladder. My cognitive abilities also took a hit, as I had more trouble recalling words (especially when speaking), limited short-term memory, and less ability to learn and remember new things. Then came neuropathy in one arm, then one leg, and finally, a crashing fatigue with muscle weakness that materialized with customary (to me) exertions.
Eventually my entire body felt inflamed. I woke up tired every morning, mentally and muscularly. My eyelids looked like I’d just emerged from a 12-hour, face-down sleep. It got so bad that holding my body upright felt like work. Whatever I did wiped me out sooner or later.
Being self-employed, I couldn’t afford extended exhaustion, so I contracted my world. I curtailed all optional activities and stuck close to home. I drank more coffee. I quit my most strenuous and stressful work, expecting to recover in the resulting ease. I limited my schedule to only one client per day. I added or increased supplements for joints and overall health. I tackled my diet. Over a couple of years, I cut out carrageenan (a common food additive), wheat/gluten, corn, and peanuts, hoping I’d finally find the answer in food sensitivities.
These measures brought some improvement, but I still felt bad with a lot of pain. A pound or two came off, but nothing fixed my ailing mind and body. I skirted stressors like a water-phobic child evades a bath. It felt like there was three feet of clear, rubbery gel between the world and me. There was a hitch of pain and difficulty to little things: crouching down to pick up a cat, pouring from a full pitcher, going up and down stairs. Somewhere along the way, life had become hard.
But I wasn’t paying for my partying past; I was settling some bug’s bar tab. Undiagnosed chronic Lyme disease had conga-lined me into the clink with no notice or formal charges. It had been happening for six years. The cell door was swinging shut, yet I didn’t know what country I was in, much less the path to release.
Lyme disease, one of several common stealth microbe infections, is enemy territory. Symptoms can flare and recede as the bacteria dart around the body using guerrilla tactics. If, like me, you tend to minimize what’s not happening right now as well as tune out routine impediments, it can sneak up on you. I found myself infiltrated and surrounded.
Borrelia burgdorferi, Lyme’s stealth microbe, punished capriciously. It poisoned my food, starved my body of energy, and hooded me in brain fog. It sabotaged my sleep. It sprinkled pain dust on my insides. It let me out on a short tether only to work, leaving me spent and wondering how long I’d be able to keep it up.
By the time I was sure something was wrong, a single explanation for my many diverse symptoms was hard to come by. No one looked at all of them as possibly related, including myself. I thought I was full of arthritis, but imaging showed it was “mild” and “age appropriate.” I worried about my numb arm and leg, but EMG testing asserted my nerves were fine. Aside from my usual high cholesterol, I had normal blood values on standard tests.
If you judge me by my symptoms, I’m infected with Borrelia and Mycoplasma. Considering my history of cat scratches, I should also have Bartonella, but physical manifestations have not specifically suggested it. I haven’t had a positive Western Blot assay for Borrelia or any coinfection. By the time I was tested, my body may have lacked the ability to produce enough antibodies to trigger a response.
“Like a shrewd abuser, Lyme disease punches where it doesn’t show.”
My gamma globulin — immune proteins that generate antibodies — was low. Borrelia and coinfections hack the immune system and turn it to their purposes; disrupted antibody production is one havoc these masterful bacteria can cause. I did have some laboratory results associated with Lyme disease — low CD57 and high TGF-Beta 1 — but these are not diagnostic in themselves. And how can a body be full of inflammation, yet C-reactive protein values are normal?
It is in this sense that my good health almost cost me everything, because standard lab tests didn’t yield results that prompted my doctors to consider infectious disease. Instead, these tests also functioned as a cover for Lyme. Like a shrewd abuser, Lyme disease punches where it doesn’t show. I was sick, but from the outside my life looked normal.
The stories you read about Lyme don’t typically portray an undramatic decline like mine. Most medical information streams seem preoccupied with the bulls-eye rash, doxycycline, and new ways to “eradicate” Borrelia with antibiotics. The popular press loves dramatic, life-and-death Lyme stories. Rightly so — they’re compelling because of the terrible consequences, and it’s important for us to understand that Lyme et. al. (coinfections) can be both highly debilitating and fatal.
But there is a vast sea of lesser suffering. Due to poor diagnostics and unsuited treatment of stealth microbe infections, many of us are more quietly sick. Countless lives are severely limited, and millions of healthcare dollars are wasted on treatments aimed in the wrong direction. And then there are the sick people offered nothing but dismissal, often with a psychiatric referral.
Enter my liberators, the gifts of nature and Dr. Bill Rawls.
Rather than fling my shrinking resources at the sieve of a positive laboratory test, I chose to invest in my health. By then I’d had undiagnosed Lyme for at least six years; to wait longer for proof that might never come while getting sicker made no sense. I began Dr. Rawls’ herbal protocol, tailored for symptoms like mine. It has been my core protocol for almost a year and a half; I’ve also added other herbs as appropriate.
The first chains to loosen were the dastardly brain fog. I’d been taking Dr. Rawls’ protocol for three months when I added chlorella for detox. Around the same time, I also added chia seeds to my diet, one tablespoon per day. Three weeks into this expanded protocol I had a moment of mental clarity. Standing in my kitchen that morning I thought: This is how I used to feel. Clear-headed. Brain power rumbling and ready to roar.
It didn’t last, but it lifted me. This tiny event could have been strung with lights and announced by fanfare, it was so foreign to my experience the past many years. In the next several months I had more and longer clear-headed periods until, at about nine months on continuous herbal therapy, the cloud around my mind was gone.
My health on herbs has leapt from caged to free. It’s the difference between store brand instant decaf coffee with lukewarm non-fat milk and a fresh, coffee-bar, full-fat, turbo-charged latte. I wake up with energy for life. I no longer hold the walls to protect my knees while descending stairs. The stiffness caused by being still is all but gone, and so is the bent-over crone who used to hobble up from sofas, chairs and bed.
I’ve lost 10 pounds without dieting. I can do gentle yoga without triggering pain. Overall, pain is greatly decreased and manageable — most days I forget about it most of the time. Viral nerve pain still comes and goes, but may be settling down. What a contrast to the achy, roving pain of active Lyme disease.
Dr. Rawls’ herbal protocol works best with his supportive diet — the notion that diet is irrelevant to healing is naïve at best. The raw materials (and detritus) from what we eat can’t be separated from health, so diet is the other key part of my protocol. I choose foods that support my healing, and avoid those that are problematic, especially highly-processed fake foods and engineered components the human body doesn’t recognize as nutrients.
It bears mentioning that even though I’m gluten- and corn-free, I still get to eat pizza, thanks to the tasty cauliflower crusts available in the freezer section. All this said, my diet isn’t perfect and probably never will be. I choose to be at peace with that. The perfect part of humanity isn’t in how well we do what we do, it’s in what God created. That perfection is an intrinsic gift we each can choose to cover up or let shine.
I’ve been able to use an obsessive-compulsive energy, a common facet of chronic Lyme, to my benefit. Like many others, I obsessively read about Lyme disease. (In our defense, people with Lyme are in critical need of information most doctors don’t have — yet. I was confused until I found Dr. Rawls’ comprehensive and readable book, Unlocking Lyme, which became my core resource.)
“Due to poor diagnostics and unsuited treatment of stealth microbe infections, many of us are more quietly sick.”
Unlike some other methods, Dr. Rawls’ protocol doesn’t require me to devote all my waking hours to the healing protocol. I’m in control of my treatment, which gives me more control in life. I’m able to stay at home, see clients, handle important responsibilities, and care for my two cats. (Had I known the future, I’d have named them “Bart” and “Ella.”)
Although some days were very challenging, I’ve been able to work throughout my illness. Herbs haven’t caused such bad side effects that I had to give up and just be sick for weeks, months, or years. I can safely stop any of them at any time. Being in charge of my own schedule is important to my life working while taking treatment, but the gentler nature of herbal therapy is key.
Herbs are one of God’s gifts to humankind, for our healing, comfort, and pleasure. We can choose to embrace this gift, or insist that our own creations are better. With pure, high-quality supplements, we can benefit from modern technologies that make herbs even more effective, easy to use, and accessible to inhabitants of the concrete jungles and far away corners.
I’m grateful for the steady, reassuring voice of Dr. Rawls in Lyme’s swamp of complexity and contradiction. All the information and resources his team puts together for our use is a priceless gift.
The improvement in my health over 18 months is amazing! My digestion is fully recovered from the ill effects of five weeks of antibiotic treatment. My biggest sleeping problems are bedtime (my bad) and when I wake up (my indoor kitty’s one fault). Before, my body woke me up because all comfortable positions had expired after six hours horizontal.
My hands don’t hurt when I play the piano anymore. My memory may be sub-par, but an ease has returned to my writing process. If I’ve lost a word, Google is easy to find. I start each client session full of energy, and no longer fear that I’ll crash before it’s complete. My “oomph” is great!
“Without the wise and kind healing of herbs, life as I’ve known it would have been over.”
My stamina is still precarious, though. Too much of any kind of stress can cause a major crash. At least now I recognize some warning signs. If I feel sleepy during the day and a little movement doesn’t erase it, I’m wise to take a nap. Another early sign I’m close to the edge of exhaustion is weakness in my thigh muscles.
I use this information to not push myself, and soon my strength will return. The stealth microbe takeover didn’t happen overnight, and I don’t expect such a formidable foe to let go overnight.
Without the wise and kind healing of herbs, life as I’ve known it would have been over. I was on track to be ruined financially while my mind and body painfully crumbled. I know now that the devastation of loss is surmountable. Loss always comes with gifts we can choose to claim. Nonetheless, I am grateful beyond words that I didn’t have to experience the sweeping losses of unchecked Lyme disease.
Welcome to the #MeAgain Story Series. Our aim is to share stories from people who have recovered, or are recovering, from chronic disease in order to give you hope that healing is within your reach. This series will highlight their struggles and triumphs to inspire you to take action and reclaim your life. Enjoy!
For desperate patients: please know that what works for one, may not work for another. Just because one person is improving on one particular treatment, doesn’t mean you will. If you want to try different things, chat with your doctor and get his/her perspective.
FYI: I did Dr. Rawl’s treatment (as well as my husband) and we both relapsed. I don’t tell you this to dissuade you but to present another side for your consideration.
We ALL desperately want to be well and would stick a needle in our eye if we thought it would work. Stick with what works for you. Stay the course. Nothing about treatment is easy or simple:
Each tick submitted for testing contributes to the research being conducted at TickCheck. By keeping records of all the results generated, we have been able to gain valuable insights into disease prevalence and co-infection rates. The comprehensive testing panel has been especially helpful in contributing to this research by ensuring all diseases and coinfections are accounted for when examining a tick.
The information below shows the positive/negative prevalence ratio of selected pathogens we test for. These pathogens were observed in ticks from the United States and Canada. Data set includes tests performed since TickCheck’s founding in 2014 and is updated in real time. (
Go to link at beginning to filter by state. I’ve added the 3 listed for Wisconsin next to the entire sample size. Please note the small sample sizes of WI ticks.
For more about Tickcheck: https://www.tickcheck.com/about
You can request free tick identification by sending in a quality picture of your tick. Using real-time PCR (Polymerase Chain Reaction), Tickcheck can determine the presence of certain pathogens with an accuracy level of over 99.9%. All information about how to send in your tick, costs of various tests, time for results, etc. is found here: https://www.tickcheck.com/info/faq
Jonathan Weber is the founder and CEO of TickCheck and became acutely aware of the dangers of tick-borne diseases after his father caught Lyme during a family trip on the Appalachian Trail.
This information supports current research showing many patients are infected with numerous pathogens causing more severe illness & requiring far more than the CDC’s mono therapy of doxycycline: https://madisonarealymesupportgroup.com/2018/10/30/study-shows-lyme-msids-patients-infected-with-many-pathogens-and-explains-why-we-are-so-sick/
It also supports previous work showing coinfections within ticks: https://madisonarealymesupportgroup.com/2017/05/01/co-infection-of-ticks-the-rule-rather-than-the-exception/
But, Patients are STILL being turned away: https://madisonarealymesupportgroup.com/2019/04/22/its-just-crazy-why-is-lyme-disease-treatment-so-difficult-to-find-in-mississippi/
https://madisonarealymesupportgroup.com/2016/09/24/arkansas-kids-denied-lyme-treatment/ “They had the classic symptoms, they had the bulls eye rash, they had the joint pain, they had fevers and had flu like symptoms, yet we were denied treatment for at least two of them and I don’t understand how this is legal,” said Bowerman.
According to Dr. Naveen Patil, Director of the Infectious Disease Program, ADH,
“We don’t have Lyme Disease in Arkansas, we have the ticks that transmit Lyme Disease but we don’t have any recorded cases of Lyme Disease.”
Bowerman also received a letter from the clinic stating doctors would no longer treat her children because she consistently questioned their medical advice and recommendations.
by Jenny Lelwica Buttaccio
Ryan Stewart, a speech-language pathologist (SLP) in Virginia, developed a strange set of symptoms in 2009 that baffled one doctor after another. Included among those symptoms were a racing heartbeat following minimal physical exertion, heart palpitations, shortness of breath, and chest pain.
“It felt like an elephant was sitting on my chest,” she explains.
Over the next 10 years, Stewart’s symptoms waxed and waned. Some days, they would let up; other days, a sudden episode of rapid heartbeats or dizziness would frighten her — sending her to the emergency room or an urgent care clinic.
Unfortunately, she always left those healthcare facilities without answers. Though Stewart believed her symptoms stemmed from her heart, repeated electrocardiograms (EKG), a cardiac MRI, and a couple week-long stints of wearing heart monitors all came back as normal.
“They could never catch a cardiac episode,” she says.
Determined to live a normal life, Stewart continued her work as an SLP and began planning a family with her husband. After a series of fertility treatments, she became pregnant only to suffer a miscarriage in the early weeks — a devastating loss, she says.
Shortly after the miscarriage, a new group of debilitating symptoms emerged, which included crushing fatigue, heaviness and weakness throughout her whole body, postural orthostatic tachycardia syndrome (POTS), numbness, and tingling. By now, it was 2013, and at the recommendation of a family friend, Stewart rallied the strength to see another doctor — a Lyme-literate one, though she didn’t realize it at the time.
This appointment, however, was different than the previous ones, and she received some surprising, but much-needed news: Stewart had Lyme disease, along with Babesia, Bartonella, and a high Epstein-Barr viral load.
“Lyme wasn’t even on my radar!” she recalls.
“I have a heart arrhythmia, which was finally diagnosed in 2016,” she says. “And now I had a feeling in my heart and chest that I had never had before. My heartbeat had no rhythm, and it was fluttering.”
Stewart likens the feeling she experienced in her chest to a switchboard in which electrical lights pop up in many different directions, one right after the other.
“I knew this was a new symptom, and I had to go to the ER,” says Stewart. “They discovered I had ventricular tachycardia, and gave me a diagnosis of idiopathic ventricular tachycardia. ‘Idiopathic’ meaning they didn’t know what the cause was.”
Since then, Stewart has tried numerous ways to address her symptoms. Her current treatment involves using beta blockers; she tried antiarrhythmic drugs, but the side effects were intolerable. She’s currently pursuing treatment for Lyme disease, too, and she’s investigating herbal therapies, stress reduction, and other lifestyle modifications in the hopes of improving her overall health.
Stewart’s story highlights some of the signs and symptoms associated with Lyme disease and the cardiovascular manifestations of the illness. To date, there’s no absolute consensus on the prevalence of cardiac involvement in people with Lyme disease. But new research suggests heart symptoms may be present in 0.4% to 10% of Lyme disease cases, according to a 2019 study in the Journal of the American College of Cardiology.
To understand what happens to a heart impacted by Lyme, it helps to first know how a healthy heart functions.
In a healthy person, the heart pumps blood like a well-oiled machine, which delivers critical nutrients and oxygen to every cell, tissue, and organ in the body, and it removes carbon dioxide and other waste products from those tissues. Blood flows in the same direction throughout the body — arteries carry oxygenated blood away from your heart, and veins return oxygen-poor blood back to the heart.
The average heart is larger than the size of an adult fist, and it’s the hardest working muscle in the body, pumping approximately 115,000 times a day. Here are some important points to remember about the heart:
Your heart and your circulatory system, which contain a vast network of blood vessels that circulate blood through your body and return it to the heart, function as one unit known as the cardiovascular system. The cardiovascular system has such an expansive network of blood vessels that if they were laid out from end to end, they would cover roughly 60,000 miles — that’s enough to go around the globe more than two times.
Like many other Lyme experts and patients, Dr. Bill Rawls, Medical Director of Vital Plan, believes many more than one in 10 people with Lyme disease may have some degree of heart issues. The symptomatology can vary from person to person, and exist on a spectrum of mild to severe.
The likely bacterial and viral culprits causing cardiovascular symptoms include Borrelia (the primary bacteria implicated in Lyme), Bartonella, Mycoplasma, cytomegalovirus (CMV), and probably many others. These stealth microbes enter the body and spread throughout the tissues by various mechanisms. They have one goal: Survival, notes Dr. Rawls. And they migrate or set up camp anywhere they can in the body, including the heart.
“There’s a growing body of evidence showing that we have microbes throughout our body and brain, including on heart valves,” says Dr. Rawls. “Often, I think these microbes are present without causing harm. They stay dormant in tissues until a disruption in the immune system occurs and depresses it, allowing the microbes to flourish.”
When stealth pathogens thrive, they can alter the electrical signaling to the heart, affecting the heartbeat or causing irritation to the heart itself.
“In a healthy heart, the SA node starts an electrical wave that spreads from cell to cell throughout the heart — the electrical impulses are such that the valves are opening and closing in proper order, or in other words, the heart is beating correctly,” explains Dr. Rawls. “But if another area of the heart gets irritated or inflamed by an infection or stealth pathogen, it may fire first and overwhelm the SA node, disrupting the heart’s regular impulses.”
The result: The heart beats irregularly, and the contraction becomes less efficient at pumping blood.
Additionally, an abnormal heart rate isn’t the only way microbes can affect the heart. As the pathogens disseminate throughout the organ and further irritate the heart muscle, the heart can become oxygen-deprived, leading to angina (chest pain), heart attack, shortness of breath, and more.
For most people with Lyme disease and other chronic illnesses like fibromyalgia and chronic fatigue syndrome, we become accustomed to symptoms that fluctuate from one day to the next. We’re so used to it, in fact, that we often adopt a wait-and-see approach to the newest symptom du jour.
But there are times when our bodies give us warning signs — red-flag symptoms that we should get checked out as soon as possible, even if going to the doctor seems uneventful or inconvenient. The primary symptoms to seek medical attention for include irregular heartbeats that aren’t going away, persistent chest pain, or shortness of breath associated with exertion, says Dr. Rawls.
However, cardiac issues may not always be so apparent, because the symptoms can range from mild to more severe, or they can be easily confused with other causes. Other signs to be aware of include:
Let’s look at three conditions that can be caused when Lyme, coinfections, or other stealth pathogens affect the heart, including the most well-known one called Lyme carditis.
Most people with Lyme are aware that Lyme carditis (LC), which causes inflammation in the heart, is the most serious cardiac manifestation of Lyme disease. Symptoms may develop and progress rapidly, even as quickly as one week after the bite of an infected tick.
No parts of the heart are off limits to these insidious microbes. They can affect the heart’s muscle tissues (myocardium), the membrane that encases the heart (pericardium), the tissues that line its chambers (endocardium), the valves, the aorta, and sometimes a combination of the different parts of the heart.
An inflamed heart impacts the way the SA node operates the heart’s electrical system. It tends to slow the heart down due to a condition known as a heart block, or atrioventricular block (AV block), which varies in severity from first-degree to third-degree.
When the heart is unable to pump blood efficiently, it can’t provide the body with adequate, oxygenated blood. If caught early, a heart block can often be resolved with antibiotics and occasionally, the use of a temporary pacemaker to maintain the electrical activity of the heart. If not swiftly and adequately treated, the result could be the placement of a permanent pacemaker or sudden cardiac death (SCD).
Generally, most cases of Lyme carditis occur during June through December, according to an article in the journal Circulation, and it seems to occur slightly more in males than in females. Additionally, LC is more likely to be found in individuals who fall into the age groups of 5 to 14 and 44 to 59 years of age.
At the present time, researchers are unsure of whether an underlying cardiac condition poses an increased risk of developing LC compared to those in the general population who contract Lyme disease.
A myocardial infarction (MI) is commonly known as a heart attack. It happens when a part of the heart is unable to receive oxygen due to a blockage in the coronary artery, which causes damage to the heart muscle. The journal, Infectious Disease Clinics of North America, lists it as another possible cardiac manifestation of Lyme disease. However, it’s difficult to know how common heart attacks are among Lyme patients, especially since many cases of the illness are misdiagnosed in both the acute and chronic stages of the disease.
An abnormal heartbeat where the heart is beating too slowly, too rapidly, or irregularly is categorized as an arrhythmia. There are several types of arrhythmias. For instance, when the heart beats too slowly, it’s called bradycardia; when it beats too quickly, it’s referred to as tachycardia.
Some arrhythmias may be benign or harmless. But others, such as the type experienced by Stewart, can bring about a distressing set of symptoms. Because arrhythmias can have the potential to be life-threatening, you should be persistent about visiting your doctor and getting a proper diagnosis.
When diagnosing Lyme-related cardiac conditions, there are a battery tests your doctor might want you to undergo, such as those that Stewart was required to do. Common testing methods may include blood work, an EKG, an echocardiogram, a cardiac MRI, wearing various heart monitors, and more. And, like Stewart’s case, testing doesn’t always capture problems on the first go-around, so it might take multiple efforts to get the right diagnosis.
Could other conditions impact cardiac function as a result of Lyme disease, too? Probably: medical literature names coronary artery aneurysms, QT-interval prolongation, and congestive heart failure (CHF) among other reported heart manifestations.
However, very few statistics, if any, exist regarding the prevalence of these conditions among Lyme patients. The medical community still has a lot to learn about the way Lyme disease, co-infections, and other microbes impact the heart.
“Anytime you have something irregular with the heart, you should have someone check it out,” advises Dr. Rawls. “The threshold for being evaluated for heart symptoms should be pretty low.”
In other words, if your heart feels off — you’re experiencing chest pain, shortness of breath, an irregular heartbeat, or something else — get to a doctor as soon as possible.
While testing can help pinpoint what’s going on, it may not always be spot on the first time you’re evaluated, and you might need to be persistent in pursuing a diagnosis. From one patient to another, Stewart says,
“When it comes to something serious like your heart, don’t stop searching for answers. Trust your instincts, and don’t ignore it.”
Once you know what you’re dealing with, you and your doctor can establish a plan of care, which may include antibiotics, particularly in the acute stages of Lyme disease. Other drug therapies include beta blockers and antiarrhythmic drugs, which might be necessary to stabilize your heart rate and prevent abnormal rhythms. However, those drugs can come with a long list of side effects, and the length of time you could be required to take them will differ from physician to physician and the severity of your illness.
Some people may need to have a temporary pacemaker implanted into the heart to regulate heart rhythms. Additionally, another treatment you may hear mentioned is a catheter ablation for arrhythmias. This procedure destroys the abnormal cells in the heart that are misfiring. Fortunately, neither of these procedures are needed very often.
It’s important to note that lifestyle modifications and herbal interventions can also play a critical role in managing cardiac symptoms and helping the heart heal. 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 note that herbs are restorative to the body and support healing,” says Dr. Rawls.
But of course, making the decision to take any natural regimen should be in partnership with your healthcare provider. Here are some of the herbs Dr. Rawls recommends:
1. To improve the heart’s electrical rhythms and the strength of its contractions, and to enhance blood flow:
2. To increase oxygenation of the tissues in the body and bolster the immune system:
3. To help decrease your microbial load:
4. For additional support:
Why do some people have heart issues with Lyme disease and others don’t? Dr. Rawls postulates that some of us may have a genetic predisposition or a certain spectrum of microbes that, when combined with lifestyle factors like high stress levels, poor diet, a toxic environment, and inactivity, makes us more vulnerable to cardiovascular involvement.
Also, “It depends on immune system functions,” Dr. Rawls says. “Some combinations of these factors may be more concerning than others, and that’s a part of the puzzle that we don’t know yet.”
For those who do face the daily stress of dealing with Lyme disease and cardiac symptoms, it can be overwhelming and scary at times — it’s easy to feel like the illness has stolen precious parts of your life, and coping can be a struggle. For them, Stewart offers these hard-earned words of encouragement:
“Try as hard as you can not to lose yourself in your diagnosis,” she says amid her own personal struggles. “Surround yourself with the things that you love and try to do one thing daily. You can still do things, but you may have to adapt them. There’s always another way to pursue your dreams — I believe you can still achieve them.”
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.