I wish I could give a magic answer to this question. Unfortunately, every case of tick- borne illness is different. It depends whether you have co-infections, whether the illnesses have crossed the blood-brain barrier, how long you went undiagnosed, and how well you respond to treatment. I went undiagnosed for eight years, and Lyme had crossed into my central nervous system. I also had Babesia, Bartonella, and Ehrlichia. For me, it took a year of intravenous antibiotics, as well as oral anti-malarial medication. I suffered a serious relapse a few months after stopping medication, and it took another couple years of oral treatment to battle back into remission. I have been steadily improving since then. In 2007 I was bedridden and hopeless. By 2008 I was living independently and freelance writing; by 2011 I moved to Boston and attended graduate school full-time; by 2014 I finished school and published my first book. Now I am writing, teaching, skiing, paddle boarding, recumbent biking, canoeing, socializing and living a great life with moderate limitations. I am still on a low-dose antibiotic as well as many homeopathic remedies and supplements. My health is continually improving. I don’t know how long it will take for you to get better, but I can tell you that there is hope.
What medicine and/or supplements did you take?
Because every case of tick-borne illness is different and individualized responses to treatment vary, it won’t help for me to tell you about my specific protocol. I can tell you that for me, a blend of Western and Eastern modalities did the trick. I combined antibiotics and antimalarial medications with supplements that replenished the nutrients depleted by Lyme. Sticking to a gluten-free, sugar-free diet has also been helpful, as have complementary therapies such as integrative manual therapy, neurofeedback, cognitive behavioral therapy and talk therapy. I recommend taking a holistic, full-body-and-mind approach to your illness.
How do you deal with people who don’t “get it”? My spouse/parent/friend thinks I’m just depressed and lazy.
This is a tough one, and one I really understand. It’s so frustrating to not only feel sick, but then to have people question the validity of your symptoms! I wish people could look inside our bodies and brains and see the damage spirochetes cause. It’s much easier for someone with a broken arm to receive sympathy, because the injury is visible. It’s also easier for patients of better-known illnesses like cancer to get the support they need, because everyone has a sense of how devastating and life-threatening cancer can be.
My first line of advice is to ignore the naysayers. No one knows your body better than you. You know what it feels like to be healthy and you know when you are sick. Seek out people who understand, or who can at least offer compassion and validation. Some patients find this in local or online support groups. Some find it by emailing me or other people on the winning end of this battle. I have found it in my friends who have supported and believed in me no matter what.
I recommend a few ways to try to bridge gaps in understanding. One way is to show your spouse/friend/parent/caregiver some of the blogs on this site, so they can read about the personal experience of Lyme disease. You might have them read some of the books that help to explain the disease. See if there is a Lyme conference near you, and ask someone you love to go with you or attend if you are unable to do so. All of these methods helped in my case, and I’m grateful for the support and understanding I now have.
Do you have any communication strategies?
One way might be to watch a documentary (such as “Under Our Skin”) together with the person who doesn’t seem to get it, so you can discuss it together. Another suggestion is to write a letter telling your loved one how you feel. Sometimes it’s hard to express ourselves orally, especially since we can be interrupted in conversation. Writing will allow you to organize your thoughts and get them all out on paper which, as Henry Miller said, is like “getting the poison out.” Use “I” statements, such as “I feel,” and try to really describe exactly what is going on inside your body. I like to think of the children’s serial “The Magic School Bus” in which a class of students embarks on field trips to places like the solar system, the ocean floor and the human body. If a Magic School Bus was driving through your body or brain, what would it see? Touch? Feel?
As Maya Angelou said, “through writing, the ‘I’ becomes ‘we’.” Writing has certainly helped me not only to heal myself but to promote understanding among others, and I hope it can be a useful tool for you, too.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick borne illness. Contact her at email@example.com
Lyme carditis: When it comes to maladies of the heart, don’t overlook Lyme disease and its co-infections.
In the summer of 1999, after studying abroad in Paris, I backpacked with a friend through Europe. We slept on trains, stayed in youth hostels, and met hundreds of fellow college students wearing small packs on their fronts and campers’ packs on their backs. We were sun-kissed, culture-saturated, and happy. The world was different then, and we were lucky to have had such a carefree experience.
Well, it was carefree for my friend and fellow travelers. But for me, something wasn’t quite right.
As I moved from country to country, I started noticing a pulling sensation in my chest. I would be walking down a street, or waiting for a train, and suddenly feel something akin to a tight rubber band being stretched from one side of my breastbone to the other. It would come on without warning, but then dissipate, until I’d feel it again a day or two later. I brushed the sensation off as strain from my backpack, which easily weighed fifty pounds.
But I felt the pulling when I wasn’t wearing the pack, too. Back in the U.S., I decided to make an appointment with my primary care doctor.
The previous semester, a student at my college had dropped dead due to an undiagnosed heart condition. Her story was in the back of my mind as I traveled, and I relayed it through fearful tears to my doctor. I remember the soft touch of his hand as he laid a reassuring palm on my forehead. “Ohhh, how awful,” he said. “Of course you were worried. But no, that’s not what’s going on here.”
What was going on, he said, was costochondritis: inflammation of the cartilage that connects the ribs to the breastbone. The doctor was able to diagnose it by pressing gently on the area, which felt bruised. He explained that while painful, the condition was nothing to worry about, and might have been brought on by the strain of carrying my pack or by stress.
That latter reason was a catch-all rationale I’d heard repeatedly in the two years leading up to my European tour. During that time I’d wrestled with an on-and-off flu, frequent bouts of bronchitis, idiopathic fevers, and hypoglycemia. No doctor had ever drawn a connection between those symptoms, and when standard lab tests came back normal, I was told I was run down or stressed—or that maybe it was all in my head.
In fact, my body was harboring undiagnosed tick-borne illnesses: Lyme, Ehrlichia, Babesia and Bartonella. It would be another six years before a specialist drew the right connection between the symptoms and made an accurate diagnosis. The costochondritis was yet another clue that was overlooked, as was the tachycardia (racing heartbeat) I sometimes experienced. Lyme bacteria can squirrel into all organs, tissues, and cells, and if it invades heart tissue, it can cause Lyme carditis, which can manifest in a number of ways: costochondritis, tachycardia, bradycardia (slow heart rate), heart block (an electrical disconnect between the upper and lower chambers of the heart, causing them to beat at different rhythms), and myopericarditis (swelling of the heart).
Comparatively speaking, my symptoms were mild, and once I was accurately diagnosed and treated, I never experienced them again. Renowned oncologist Dr. Neil Spector was not as lucky. As he details in his memoir Gone In a Heartbeat, Dr. Spector experienced 16 years of episodic alternating tachy- and bradycardia, even once having the symptoms of a full heart attack. His heart rate would always return to normal, though, and his symptoms, like mine, were often blamed on stress. By the time Dr. Spector was accurately diagnosed with Lyme, he had dealt with brain fog, stiffening of the veins, visions of bright lights during sleep (later associated with lack of oxygen to the brain due to a slow heart rate), heart block, weight loss, and arthritis. He had a permanent pacemaker, a defibrillator, and ultimately underwent full blown heart failure and a heart transplant.
Had Dr. Spector’s heart problems been accurately diagnosed from the start as Lyme-related, he could have avoided this near-fatal trajectory. If your symptoms have been written off as “stress” and you know—in your heart—that something deeper is going on, please persist in finding the right doctor and right diagnosis.
If you have already been diagnosed with Lyme but have not had your heart checked, please ask your doctor to do so. Though the CDC only reports carditis in 1% of Lyme cases, its severity can be a matter of life and death.
Opinions expressed by contributors are their own.
Jennifer Crystal is a writer and educator in Boston. She is working on a memoir about her journey with chronic tick-borne illness. Contact her at firstname.lastname@example.org
The most common tick-borne infection is Lyme disease. However, infected ticks also carry and spread numerous co-infections.
The newest Global Lyme Alliance podcast, with GLA’s Dr. Harriet Kotsoris and Dr. Mayla Hsu, discusses Lyme disease and the co-infections that are often transmitted along with the initial tick bite. Below is an excerpt. CLICK HERE to listen to the entire podcast.
Host: In this podcast we’re going to expand our discussion to include co-infecting tick-borne diseases that are often transmitted along with Lyme. I’m in our studio with Dr. Harriet Kotsoris and Dr. Mayla Hsu who are science and research officers at the Global Lyme Alliance. I’ll start off by asking, what is a tick-borne infection?
Dr. Harriet Kotsoris: A tick-borne infection is an infectious disease spread by the bite of an infected tick. The most common is Lyme disease but many others are present in the same tick bite. Depending on the location and the season, up to half of all ticks may have had more than one kind of microbe or disease producing organism that can make humans very sick. The list of microbes is expanding up to 11 or 12 at last count, but we’ll focus today on the major ones. These are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease producing organisms.
There is an increasing number of ticks that are multiply infected as we just said. In a recent west European study of Ixodes ricinus ticks, very similar to the American black legged deer tick, up to 45% of those ticks were co-infected with up to five pathogens or disease producing organisms. We have a similar experience here in the United States.
Host: How many people get tick-borne infections?
Dr. Kotsoris: The Centers for Disease Control calculates about 330,000 Lyme disease cases per year but it may be even over 400,000. It’s not really understood how many of these are also infected with other microbes, which in some cases cause different illnesses that require different diagnostic tests and different treatments.
Host: What can you tell us about the ticks that spread these diseases?
Dr. Mayla Hsu: Well in the United States there are different families of ticks that may be co-infected with various pathogens. As Harriet just mentioned, the Ixodes ticks or the black-legged ticks are now in half of all United States counties. There’s another tick that is further south, known as the Lone Star and there is also an American dog tick called Dermacentor that also harbors infectious microbes.
Host: How about internationally?
Dr. Hsu: Well it seems that ticks are generally found in all temperate climate zones, so there are the Ixodes species in North America, these are also found in Europe and Asia, there are other ticks found in Africa, parts of temperate Africa, that infect humans as well as animals there, and they’re responsible for causing relapsing fevers. There are soft ticks, Ornithodoros, the Ornithodoros family of ticks, that are found in South America and Western Africa, and these too are associated with causing diseases in humans. The jury is still out in Australia. There are ticks there but it’s not known whether or not they’re correlating with human disease.
Host: What do we know about changing tick geography?
Dr. Kotsoris: It seems that in the United States, the geographic range where ticks are found is expanding and we know that with climate change the range is also changing, so for instance, it is expanding northwards into Canada where Lyme disease was never a concern, it now is starting to emerge. We can expect and see more tick-borne diseases elsewhere, also spreading in through the United States. These are now classified as emerging infections and so public health authorities are very concerned about this and tracking the emergence of more tick-borne illnesses.
Host: What are some of the emerging tick-borne diseases and again we’re going to focus only on the major ones about which the most is known.
Dr. Hsu: One of the more interesting tick-borne illnesses that has been emerging in recent years is called babesiosis. This is an illness caused by a parasite that’s very similar to malaria. It’s called Babesia, Babesia microti. This is characterized by recurrent fevers, so people get fevers that spike and then go away and then come back over and over again, chills, muscle and joint aches and pains and it can be actually fatal in rare cases. The diagnostic test for this is not a blood test looking for antibodies, rather the blood is examined under a microscope and here you can see the organism actually growing in red blood cells, so just like malaria it grows in red blood cells and you can see it in a blood smear and the treatment required for this is also very similar to anti-malaria therapies, so that’s drugs that are similar to quinine but also anti-protozoan drugs like Atovaquone, also known as Mepron, and antibiotics, azithromycin and clindamycin.
About 1,800 people were reported to have gotten babesiosis in the year 2013, and the numbers are rising so where we see Lyme disease we are also starting to see more and more Babesia, and it’s important to point out that the treatment and diagnostic for Babesia is different from that of Lyme disease, so if Lyme disease is suspected and is looked for, and treated, a person who also has Babesia will not get adequately diagnosed or treated and can continue to be ill.
Host:There are several bacterial diseases that are spread by ticks that have been getting more attention in recent years, Anaplasma and Ehrlichia.
Dr. Kotsoris:Yes, historically these started out as veterinary diseases. They were identified in the late 80s and early 1990s, after having been studied as long-standing veterinary problems. These organisms belong to a group known as the Rickettsiae, Anaplasma, Ehrlichia, and Rickettsia itself. These are what we call obligate intracellular parasites. They’re bacteria that only live inside the cells of another organism, and that’s how they affect humans. Human granulocytic anaplasmosis is what we call a gram-negative bacterium of the rickettsia family. It invades white blood cells after a tick bite by an infected tick and it travels and lodges within granulocytes or the neutophils, the white blood cells of the human being.
About one to two weeks after the bite, the patient will develop spiking fevers, headache, drop in white blood count, drop in platelet count…the platelets are responsible for clotting blood, and a rise of liver function tests indicative of an inflammation of the liver. These organisms are very smart and release a chemical substance known as a chemokine, or a cytokine, interleukin-8 that actually is an attracting chemical for white blood cells to help propagate the infection throughout the body. The diagnosis has to be made by blood smear because the comparison of acute and convalescent sera that is the development of convalescent antibodies may be too late in the game, that the patient will have been compromised medically and treatment will have been delayed. The diagnosis can also be made by something known as polymerase chain reaction and the treatment is doxycycline, 100 milligrams twice a day, similar to what’s used in acute Lyme disease and the treatment is until three days after the disappearance of the fever.
Related is something known as human monocytic ehrlichiosis. Ehrlichia and Anaplasma were used interchangeably in the past, but now they’ve been divided into separate categories because of the bacterial composition. Human granulocytic anaplasmosis is carried by the black legged deer tick, Ixodes scapularis, Ixodes pacificus on the west coast, but this vector for human monocytic ehrlichiosis is the Lone star tick, or Amblyomma americanum and Dermacentor variabilis, the American dog tick. The classic infection in the Midwest in particular is by Ehrlichia chaffeensis and Ehrlichia ewingii, more so chaffeensis. Usually peaking in July, usually affecting males older than 50 years old, and again, within a few weeks of the tick bite, the patient develops headaches, muscle aches, otherwise known as myalgias, fatigue, a drop in white blood count, a drop in platelet count, fever, gastrointestinal systems, which may lead to also respiratory insufficiency and kidney failure.
The three states most affected by Ehrlichia chaffeensis and ewingii are Oklahoma, Missouri, and Arkansas. They account for 30% of the reported cases of these bacterial species. The numbers have been reported in the low thousands over the last few years. In 2009, a third cause of human ehrlichiosis was identified in the upper Midwest. This has been known as Ehrlichia muris-like agent. Interestingly, it also exists in Eastern Europe and Asia. The detection of this pathogen or disease producing organism is by looking for the DNA, that is the genetic material, of this organism in the blood of patients. About 2.5% of Ixodes scapularis ticks are infected by this E. muris type agent. Note that this one is spread by Ixodes scapularis, the black legged deer tick, not the Lone Star tick as in human monocytic ehrlichiosis.
One of the better known bacterial infections that people read about, hear about, especially with people traveling into the Rocky Mountain area, into the Midwest, into the Southeast, is something known as Rocky Mountain Spotted Fever. This is Rickettsia rickettsia…it is spread by the American dog tick, by the Rocky Mountain wood tick, and by the brown dog tick. There are reported 14 cases per million population, peaking in April through September. Despite its name, as I said before, it’s not confined to the Rocky Mountains, it’s also found in the southeastern United States. These bacteria, after the tick bite, travel within the blood stream and lodge within endothelial cells, that’s the lining cells of small blood vessels, and elicit inflammatory changes and make the blood vessels leaky, affecting all organs infected, especially the skin and the adrenal glands. The platelets responsible for clotting are consumed and you may have kidney malfunctioning.
Patient will present with severe headaches, high fevers, a few days after the bite and a few days after that, a spotted rash on the wrists, palms, and ankles. Patient may also have abdominal pain, nausea, vomiting, and other generalized symptoms. The mortality rate can be as high as 4% and this is caused by a delay in diagnosis and treatment. The treatment is doxycycline and patients do best, and have a much lower morbidity and mortality if they’re treated within five days of being infected.
Below is the full podcast with Dr. Kotsoris and Dr. Hsu. They continue their overview of Lyme and co-infections, specifically Bartonella and the Powassan virus.
Follow Global Lyme Alliance on SoundCloud to hear future podcasts.
As the majority of emerging infectious diseases stem from wildlife, the rise of tick-borne Infections in gray wolves is a good indicator of the future of Lyme and other tick-borne diseases.
Wild gray wolves evoke images of unfettered nature and animals loping freely through forests and meadows. But a new study of wolf populations in northwest Wisconsin shows that a high percentage of them are actually infected with tick-borne infections, which suggests that they are potentially suffering ill health.
Many of us know that rodents like squirrels and mice, as well as larger animals like white-tailed deer, are hosts for Ixodes scapularis, the tick that transmits Lyme disease. The bacteria that cause Lyme disease (Borrelia burgdorferi), anaplasmosis (Anaplasma) and ehrlichiosis (Ehrlichia), grow in these host animals and colonize the ticks who bite them to take blood meals. When infected ticks then bite humans, we too become infected by the bacteria, and get sick.
Scientists analyzed 373 blood samples drawn from wild gray wolves between 1985 and 2011. Using the Snap 4Dx test, which is used by veterinarians to test for tick-borne illnesses in dogs, they looked for antibodies that recognize these microbes. Their presence indicates past exposure to the pathogens. Overall, they found antibodies to B. burgdorferi in 65.6% of animals, Anaplasma antibodies in 47.7% and Ehrlichia antibodies in 5.7%. These findings show that tick-borne pathogens are common in gray wolves in Wisconsin, and as expected, the American dog tick Dermacentor, and I. scapularis tick vectors that transmit them were routinely found on the animals.
While the sex of the wolves was unrelated to the percentage infected, their age was important. A higher proportion of adult wolves had B. burgdorferi, Anaplasma, and Ehrlichia antibodies than pups. This is unsurprising, since greater age means increased probability of being bitten by ticks. Also, adult wolves move greater distances, with greater exposure to questing ticks, compared to pups, who generally stay near their den.
The research also showed a 50% increase in the prevalence of B. burgdorferi between 1985 and 2011 among gray wolves. The counties in which wolf exposure has increased the most are among the Wisconsin counties in which human Lyme disease has also expanded the most. By contrast, the prevalence of heartworm, a parasitic disease spread by mosquito bites, did not change during this time frame, suggesting that conditions favorable to ticks, but not mosquitoes, may be driving disease spread.
Why should we care about tick-borne diseases in wild wolves? They are free-ranging animals whose exposure to ticks is greater than that of pets or humans. They go places that we don’t go, and humans do not remove ticks from them as they do from domestic dogs. Thus, they can be regarded as sentinels of infectious diseases in wilderness spaces. Nationally, the Lyme disease epidemic in humans is expanding, particularly in the Northeast, Wisconsin and Minnesota. Several studies suggest that climate change may favor the growth of ticks and mosquitoes. So, information about vectors and microbes in wild animals everywhere will help us to plan and implement measures for safeguarding public health. In the last 75 years, 71.8% of emerging infectious diseases came from wildlife.
But aside from illnesses that we as humans may acquire, the health of gray wolves is important for another reason. They are predators and preserve ecosystem health, by preventing the overpopulation of prey species. Whether gray wolves become severely sick from tick-borne illness isn’t well known, with a few documented cases of captive wolves losing weight after Borrelia infection. So far, it appears that the wild wolf population, rebounding from near-extinction, has not been harmed by tick-borne microbes. However, we have a responsibility to remain vigilant to health threats to all species and in all habitats, not just our own.