Tag Archives: co-infections

Not All Lyme Rashes Are Created Equal

by Jennifer Crystal

Lyme disease: that’s the illness you get when you find a bulls-eye rash, right?

It very well could be, but here’s the catch. The bulls-eye rash isn’t the only sign of Lyme disease. Nor does every Lyme rash (Erythema Migrans or EM) present as a target with red rings around it. To assume that Lyme always comes with a bulls-eye rash is, in fact, to be way off target and—worse—poorly informed when it comes to diagnosing the disease.

In fact, less than 50% of Lyme patients ever find a bulls-eye rash, or any rash at all. But that doesn’t mean they don’t have Lyme. It means they, and their doctors, will need to look a little further.

I found a rash on my forearm in the summer of 1997 while working at a camp in Maine. It wasn’t a bulls-eye shape. It was a series of red dots, sort of stippled, that extended from my wrist almost to my elbow. It wasn’t raised and it didn’t itch.

“It’s probably from your sleeping bag or something,” the camp nurse said. In 1997 Lyme disease was not on the public health radar or mine, which is ironic since I grew up in Connecticut where the disease was first discovered.

That same summer I developed hypoglycemia, which I later learned is a common symptom of the tick-borne disease babesia, a co-infection of Lyme. That fall I was bedridden with flu-like symptoms. Had I presented these symptoms, and my rash, to medical professionals today, they might have seen a pattern and tested me for tick-borne illnesses. Lyme literacy is improving, but not all doctors look at individual symptoms in a big picture way—and that pesky myth of the bulls-eye rash, especially if you don’t have one, still persists, which is why I continue to share my story.

Sample Em-RashEM rashes present in many different ways. Some are small. Some are big and blotchy. Some are spotted. Some are pink and some are bright red. If these sentences are starting to sound like a Dr. Seuss book, it’s because the lesson they contain is simple. If you find any type of rash at all, especially during the summer months, and if you subsequently experience symptoms of tick-borne illness, do not assume your rash is nothing. Show it to a Lyme Literate Medical Doctor (LLMD), who you can find here.

If you, your children, or your pets spend time outdoors, it’s important to do nightly tick checks of everyone exposed. As you are looking for culprits, also keep your eye out for rashes of all kinds. They don’t always appear in obvious places. A rash could be on your back—have someone else look!—in your groin, between your toes, behind your ears, or on your scalp.

And a rash might not be there at all, but you can have Lyme disease without ever getting one. Therefore, in addition to checking yourself for ticks and rashes, it’s important that you keep an eye out for typical Lyme symptoms. If you experience flu-like symptoms such as fatigue, joint aches, headaches, neuropathy, Bell’s palsy, or any other unusual symptom, do not brush it off as a summer flu.

Maybe you’ll get lucky, and that’s all it will be, the summer flu. But it’s better to be safe than sorry; let an LLMD make that call. You will also want to keep an eye out for symptoms of co-infections, like the hypoglycemia which I experienced.

Of course, if you are lucky enough to find a bulls-eye rash, take it as an unequivocal sign: you have Lyme disease. Do not wait to see if you develop symptoms. That can take months. By which time the disease, and possibly co-infections, will have spread further into your system and may cross the blood-brain barrier. Then the disease(s) will be much harder to treat.

In a way, finding a bulls-eye rash is like winning the lottery. If you’re smart, you have a ticket to immediate diagnosis and treatment. Moreover, it’s unlikely that you won’t have to deal with chronic symptoms and long-term treatments. If you aren’t so lucky as to win a bulls-eye, keep looking for ticks, atypical rashes, and symptoms of tick-borne disease.

I wish you all a Lyme-free summer!


Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir, One Tick Stopped the Clock, for which she is seeking representation. Contact her at: lymewarriorjennifercrystal@gmail.com

Lyme Isn’t a Choice

by Jennifer Crystal

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions.

I once spoke with an acquaintance who had struggled with the standard Lyme disease symptomsfatigue, joint aches, neuropathy—for many years. She’d been to many infectious disease specialists, rheumatologists, endocrinologists and neurologists, and no one could figure out what was wrong. I asked if she’d ever been tested for Lyme disease. She shook her head and said, “Aren’t the tests unreliable anyway?”

“Yes,” I said, “the standard tests are only 50 percent reliable. But a Lyme Literate Medical Doctor (LLMD) can do more specialized tests and make a clinical diagnosis; that is, one not based solely on standard tests alone. It would be worth a visit just to see if your symptoms might come from from tick-borne disease.”The woman shook her head.

“Nah, I don’t want to have Lyme,” she said. “I don’t want to go through everything you did and have such extensive treatment.” This denial was because she knew I’d been bedridden for several years, and that it had taken a year of intravenous antibiotics to get me into remission. She also knew that while I had regained much of my health, I still had some limitations, because my three tick-borne co-infections (Lyme, babesia and ehrlichia) were chronic.

Aghast, I gaped at her. This woman was acting as if she could pick and choose which disease she’d prefer to be diagnosed with, the same way you might walk into a grocery store and say, “I don’t really feel like making asparagus—too much preparation. I’ll have carrots instead.” Alas, patients with the misfortune to have contracted  tick-borne disease don’t have that type of freedom.

In the same way a patient with cancer can’t decide they’d rather have shingles. Such irrational thinking really isn’t thinking at all. No one wants to go through intense treatment, but we do it with the hope of getting better. We do it because the alternative is denial, which will make us sicker. If this woman had Lyme and didn’t get a proper diagnosis and treatment, her symptoms were only going to get much, much worse. Pushing a problem under a rug doesn’t make it go away. It just creates a larger problem that still must eventually be addressed.

Now, one could argue that a Lyme diagnosis is less definitive than a cancer diagnosis, because of the faulty testing. But testing is getting more and more specialized, and a good LLMD can make an expert assessment as to whether or not someone is suffering from tick-borne disease. In my case, my clinical diagnosis was corroborated by CDC-positive testing for all three of my illnesses. I was unequivocally infected with Lyme, babesia, and ehrlichia.

Much to my disbelief, I had heard other patients with equally unequivocal diagnoses denounce their diagnosis because they didn’t want to deal with having such a serious disease. I know one fellow who tested positive for Lyme and said, “I don’t want to take such strong medication or make all the lifestyle changes you’ve had to make.” So that person continued to see a Lyme-illiterate doctor who gave him the answer he wanted to hear—the wrong ones. Yes, this doctor said the man’s symptoms could be from something other than Lyme. But the doctor has yet to figure out what that “something else” is. In the meantime my friend is twisting in the wind, uninformed and suffering. His symptoms of joint pain and headaches have only gotten worse, because his tick-borne infections continue to go untreated.

Alas, getting Lyme disease is not a choice. I did not choose for a tick to bite me. I did not choose to lose my capacity to work or care for myself. I did not choose to be bedridden.

I did choose to confront my health issues head-on. I did choose to push beyond my original diagnosis of chronic Epstein Barr virus, because I knew something else was also going on. The key word here is “also”. I did have Epstein-Barr. But I also had three tick-borne diseases, and if I hadn’t found a doctor to accurately diagnose and treat them, I’d still be suffering terribly.

Please don’t give in to denial and fear. If you think you might have a tick-borne disease and have been avoiding going to an LLMD, or if you have been diagnosed with one or more tick-borne illnesses and have yet to seek treatment— please rethink these decisions. The only way you will ever get better is to acknowledge the truth of what’s going on in your body, and do something about it. I’m sure glad I did!


jennifer crystal

Opinions expressed by contributors are their own.

Jennifer Crystal is a writer and educator in Boston. She has written a memoir about her journey with chronic tick borne illness, for which she is seeking representation. Contact her at: 

lymewarriorjennifercrystal@gmail.com

The Spectrum of Lyme

by Jennifer Crystal

Just this week, I heard from yet another friend who had found an engorged tick on her child. With tick populations soaring, it’s not surprising that so many people are being bitten during the summer months. When it’s you or your loved one who gets bitten, the prospect of Lyme and its co-infections becomes highly personal and all too real.

For people who know me, my story may seem terribly frightening.

This is because my friends know that as a result of Lyme, and two tick-borne co-infections—babesia, and ehrlichia—I was on intravenous antibiotics and bedridden with  flu-like symptoms for years. They know I suffered insomnia, and hallucinogenic nightmares, and that I was unable even to read or write for awhile. So when they themselves find a tick, they are scared they are going to end up like me.

That is not necessarily the case.

I wound up as sick as I did because my tick-borne illnesses went undiagnosed for eight years. The three separate infections spread all through my body and central nervous system before I knew it. Then I got mono, which turned in to chronic Epstein-Barr virus. So by the time I was finally correctly diagnosed and started treatment for tick-borne illnesses, my immune system was seriously compromised. Mine was one of the worst cases that my Lyme-literate medical doctor (LLMD) said he had ever seen. It took years to battle myself back into remission, and later I had to endure a complete relapse.

A case like mine is extreme among Lyme sufferers. There are cases that are even worse, though; some patients become paralyzed or schizophrenic, and some people have died from complications. But getting Lyme does not mean you are going to immediately fall into that extreme. In fact, if you find a tick or rash and are diagnosed quickly, chances are very good your case can be cleared up entirely with three weeks of initial antibiotic treatment.

What I want people to understand is that suffering from tick-borne illness lies on a spectrum, and that there is a lot of ground in between the two extremes. There are actually three defined stages of Lyme. The first is early localized disease, when a case is caught early and the Lyme bacteria have not yet spread throughout the body or crossed the blood-brain barrier. The second is called early disseminated Lyme, which occurs several weeks or months after a tick bite. Bacteria by this time have begun to spread but may not have yet reached the point where the illness is chronic. The third stage, late disseminated Lyme, includes cases like mine, where symptoms are severe and most   difficult to treat. For me, this means I manage my tick-borne illnesses by taking medications and supplements, sticking to a strict sleep and dietary regimen, resting in the afternoons, and pacing myself both physically and mentally.

Tick-borne illness will always be a part of my life. However, that does not mean it will always be a part of yours, if you happen to get infected. Most people don’t realize that Stage 2 even exists, and yet many cases fall into that category.

It’s also important to remember that no two cases of Lyme are alike. Your version of Stage 2 might include fever and headaches, while someone else might experience Bell’s Palsy or numbness in the extremities (neuropathy). Still a third person might have all of these symptoms. Lyme disease that is not complicated by co-infection(s), like my own, is easier to treat, but keep in mind  that everyone responds to treatment differently. The antibiotics that work for one person may not work for another. An LLMD can treat a thousand patients with a thousand different protocols. Therefore, you can’t assume that what happened to one person will happen to you.

If you’ve contacted me about a tick bite, you’re already farther ahead of the game than I was when I first got sick. Thanks to increased Lyme literacy, people are more cognizant of tick-borne illnesses, and take better preventative measures. The more we can spread Lyme awareness, the more cases will fall into Stage 1 rather than Stage 2 or 3. Let’s work together to tip that scale!

 


jennifer crystalOpinions 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 jennifercrystalwriter@gmail.com

Chronic Lyme Disease Series: Chelsea’s Story

Reprinted with the permission of itslyme.com
#MyLymeLife

My Lyme disease story starts two years ago.

At 27 I was fully devoted to my career and would blow off steam from a long day’s work at a kickboxing class 2-3 times a week. It felt good to release negative energy after a stressful day. But in April 2015, I started missing regular workouts because I just couldn’t shake the flu. I had a scratchy throat, mild fever, swollen lymph nodes, muscle aches as well as sudden bouts of vertigo. This would come and go for a few days at a time but I would never actually get sick.

As the months dragged on my health did not improve and my energy was dropping. I couldn’t stay late at work when my job demanded it and would limit social engagements. I felt like my body was telling me, “You’re not getting enough XYZ!!”. If only I could figure out what XYZ was – surely I’d feel better. My new family doctor, a female, thought I was being dramatic and ordered some routine blood tests and a physical exam to quell my fears. It turned out I was deficient in Vitamin D, a common ailment in our cold Canadian climate. I started taking a supplement and carried protein bars since I was also borderline hypoglycemic. Years later I would find out that reactive hypoglycemia is common in Lyme-MSIDS (Multiple Systemic Infectious Disease Syndrome) patients (Horowitz, 2017).

My bloodwork had come back with a positive Mono-spot test.

Despite my Vitamin D levels increasing and eating smaller, more frequent meals I still didn’t feel like myself, so I kept at it. After a few more rounds of blood work and months later, my family doctor called to say she had some results. My blood work had come back with a positive Mono-spot test. Little did I know, my positive Mono test and host of seemingly unrelated symptoms was a hint at something larger and much more dangerous. Many of us carry viral infections without knowing it and being infected with Lyme disease (and other co-infections) can cause a reactivation. Epstein-Barr is one of the most commonly reactivated viruses. (Horowitz, 2017)

I took about a month off work to recover from Mono. This would help subdue my dizziness but my health would continue to decline over the next nine months. When my symptoms were at their worst, my exhaustion would result in difficulty walking or standing for more than a few minutes. This would later be diagnosed as POTS (Postural Orthostatic Tachycardia Syndrome) which is a form of autonomic nervous system dysfunction. It explained my uncontrolled blood pressure, dizziness especially after standing, brain fog and some of my digestive issues.

My family doctor was tired of listening to my complaints and ran out of specialists to send me to (six in total). Blood tests, MRIs on both my brain and stomach, neurological exams, echocardiograms, Holter monitors and plenty of EKGs – all came back fine. I also investigated other options including the Mayo Clinic, which turned me down. Best Doctors, a second-opinion medical service available through my insurance, diagnosed me with Somatization disorder (it’s all in your head disorder). The only hints in my bloodwork were a consistently raised ANA (anti-nuclear antibodies), elevated liver enzymes and deficiencies in B12, Zinc and Vitamin D, suggesting my body was over-worked and fighting an unknown intruder.

It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me

In the fall of 2016, I decided to see a Naturopath and she wanted us to take Lyme Disease seriously, despite the fact I had tested negative multiple times through the provincial testing protocol in Canada (which is famously unreliable). I sent my blood away to California (IGeneX labs). My result was positive for Lyme Disease and Ehrlichiosis (caused by various types of Ehrlichia formerly called HME, human monocytic ehrlichiosis; the severity of the disease can range from mild to life-threatening. It had taken nearly two years to receive a proper diagnosis for the many symptoms that ailed me, but it made so much sense when I began to educate myself. My body had been under attack and was crumbling under the pressure. Due to the prolonged emotional and physical stress of those two years, my adrenal system was extremely fatigued, further worsening my sleep, hypoglycemia, and energy. After starting treatment with a Lyme-literate doctor I was also clinically diagnosed with Babesia and Mast-Cell Activation Disorder.

If it wasn’t for my Naturopath I don’t know where I’d be today. I hope that by telling my story someone else will be saved the pain I was caused by Doctors and Specialists who brushed me off and misinformed me about Lyme Disease. Always listen to your body and trust your instincts. Keep searching until you find the answers you deserve.

Chelsea’s Symptom Breakdown:

First onset symptoms: Dizziness, vertigo, lightheadedness, fatigue, feeling ‘rundown’, sore throats, migraine aura, swollen lymph-nodes, hypoglycemia

Recall tick bite/bullseye rash? No; possible rash

Chronic Lyme disease symptoms: Extreme fatigue, insomnia, POTS, low-grade fever, poor circulation, brain fog, stumbled walk, muscle aches, sore throats, inflamed gums, migraine aura, heart palpitations, heart block, heart murmur, low BP/high BP, difficulty breathing/shortness of breath, stiff joints, heightened anxiety, phantom sounds (between sleep and awake), difficulty remembering common words

Diagnosis before Lyme  disease: Mononucleosis, B12 deficiency, Somatization disorder, anxiety

Lyme Disease and co-infections diagnosed by:  Blood test through multiple labs in the USA (IGeneX and MDL) as well as clinically with a Naturopath, also receiving treatment for adrenal fatigue, mast cell infection, and Babesia.


Chelsea is the creator of itslyme.com. Chelsea’s treatment is ongoing and she looks forward to returning to work in the coming months. She is hopeful for a 90-100% recovery and thankful to the Lyme community for the support she’s received.

 

References

Horowitz, R. I. (2017). How Can I Get Better? New York: St. Martin’s Press.

Fear of Lyme Reinfection

by Jennifer Crystal

Hoping you don’t get another tick bite and Lyme reinfection this spring.

 

This time of year always makes me happy: the tulips come out, everything blooms, and the world feels hopeful again. It also makes me nervous, because I know spring brings an influx of my worst enemy: ticks. Articles and newscasts from The Boston Globe to CBS warn that a warmer winter will make tick season especially bad this year.

“But isn’t the horse already out of the barn,?” a friend asked me when I voiced my concern. She meant that since I already have Lyme and babesia, what would be the harm in getting a new tick bite? A lot, it turns out.

Getting a new tick bite ranks up there with relapse in terms of my worst fears. My Lyme and babesia are currently in remission, well-controlled and well-maintained by specific medication, supplements, dietary restrictions, and lifestyle limitations. A new infection could spur a relapse, and engender new symptoms that I did not experience with my initial infection.  It could also re-infect me with ehrlichia, a co-infection I previously beat, or give me several new co-infections. One bite could send me back to square one.

I know the danger of this because I watched a friend go through it last summer. Like me, she had been in remission, and was out living her life: raising her children, taking spin classes, working and socializing. Then one day she sat on a blanket under a tree at her child’s lacrosse game, and a few days later, woke up sicker than ever. A tick had bitten her while she sat watching that game, reinfecting her not only with Lyme but with co-infections she’d never had before. She ended up in the hospital.

Besides the physical toll these new infections took on her body—she went from attending spin classes to grimacing in pain when a physical therapist tried to stretch her legs in her hospital bed—the illnesses also took an emotional toll. The isolation and pain of tick- borne illness can cause depression and anxiety, but those feelings are much worse when you’ve survived the illness before, tasted freedom and suddenly had it stripped from you again. My friend felt hopeless.

Who can blame her? Remembering the devastation of my relapse, I can only imagine how distraught I’d feel if I were to get a new bite, especially since there are so many new tick-borne illnesses on the rise. A recent story on CNN warns of a rise in tick-borne Powassan virus, a potentially deadly encephalitis. Symptoms can include fever, headache, difficulty maintaining consciousness, cognitive impairments and seizures. A recent NPR report speaks to a rise in newer tick-borne illnesses, such as anaplasmosis and Heartland virus. Other prevalent tick-borne illnesses include Bartonella, Borrelia miyamotoi, Bourbon virus, Colorado tick fever, mycoplasma, relapsing fever, Rocky Mountain spotted fever, Southern Tick-Associated Rash Illness (STARI), tick paralysis, and tularemia.

Fear of a new bite can make a Lymie want to hide. Short of that, here are some tips for preventing Lyme disease while enjoying the great outdoors. These are important for everyone to follow, whether you’ve already had a tick-borne illness or not:

  • Use insect repellent that contains DEET, or the more natural components of picaridin and oil of lemon eucalyptus, and treat clothing and outdoor gear with permethrin.
  • Carry repellent with you at all times. You never know when you’re going to be at a friend’s house and they’ll suggest going for a walk or taking their kids out to play.
  • Wear light-colored, long-sleeved clothing. Tuck pants into socks, no matter how geeky that sounds. Wear close-toed shoes.
  • Stay away from grassy areas, wooded areas, brush and leaves. Stick to the center of gravel and dirt paths. One patient said she’s so afraid of leaf piles on the sidewalk that she walks in the street. I do this, too! (Just make sure it’s safe!)
  • Do a tick check immediately after spending time outdoors, remember to look in tick hiding spots such as the groin, the belly button, behind the ears, and on top of the head. Do a check every night before bed.
  • Remember to check your pets, too! One man in West Hartford, CT recently pulled 30 ticks off his dog after a walk around the reservoir. Dogs tend to run into the woods and roll in the grass, and then they bring whatever they pick up into your home.
  • Shower immediately after spending time outdoors. If you have small children, be sure to bathe them and check them for ticks every single night. Kids are at greater risk of getting tick bites and associated illnesses because they are closer to the ground and spend more time playing outside than adults.
  • Put clothes in the dryer as soon as you come inside for 10-15 minutes. High heat kills ticks.
  • Carry a mini lint brush with you, and periodically swipe it over your body and clothes. Remember that ticks are sometimes hard to see so they may get picked up and be noticeable on sticky lint paper.

Most important, we can’t let ourselves be blocked by fear, because then the ticks have won. Spending time outdoors will always make me nervous, but I believe that using these preventive measures will keep me safe. I wish everyone an enjoyable and tick-free season!


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 jennifercrystalwriter@gmail.com

Podcast: Tick-Borne Co-Infections, Bartonella and Powassan Virus

Bartonella is a tick-borne co-infection. As with Lyme disease, its symptoms can be debilitating.

 

While the most common tick-borne infection is Lyme disease, infected ticks may carry more than one kind of microbe or disease producing organism that can make humans very sick. The microbes are called co-infections, the simultaneous infection of a host by multiple pathogenic or disease-producing organisms.

Dr. Mayla Hsu, GLA’s Director of Research and Science, and Dr. Harriet Kotsoris discuss Lyme and its co-infections in a recent podcast. Below is an excerpt of the podcast that focuses on Bartonella and the Powassan virus.

CLICK HERE to listen to the entire podcast.


Host: I’ve heard there’s a new tick-borne infection that’s somewhat controversial called Bartonella. Mayla would you like to tell us more about that?

Dr. Hsu: Sure. Bartonella is a bacterium that’s controversial in discussions of tick-borne illnesses because there is quite a lot of debate about whether it is actually spread by ticks and causes human disease. Now we know that it’s spread by fleas and body lice and sand flies, but ticks are a somewhat new idea that is gaining traction in some quarters. Bartonella is in domestic and wild animals and it causes various illnesses that we know about, such as cat scratch disease and trench fever, where people get bitten by fleas that are feeding on animals or by body lice. Now in recent years, Bartonella bacteria has been found in ticks in many countries around the world. The ticks do feed on host animals that carry Bartonella so it’s not surprising to find the bacterium in the ticks.

Humans with tick exposure, like hunters, have been found to have antibodies against Bartonella so that indicates they’ve been exposed, but whether Bartonella actually causes illness in healthy people is under debate. There’s no question that Bartonella is a big problem for people who are immuno-compromised and they can get sick, but even there we don’t know how much of it is acquired from tick bites versus flea bites. Now, if people do get Bartonella it’s diagnosed by looking for the DNA of the bacteria or by growing or culturing the bacteria, and then it is treated with antibiotics. Often the first symptom is striations or lines that look like stretch marks on the skin and it can progress into fever and lead to very serious illnesses including things like heart inflammation or endocarditis.

Host: A new class of microbe that is very different from the bacteria and parasites we’ve been hearing about are the viruses spread by ticks. Since they can’t be treated with antibiotics, should we be worried about them?

Dr. Hsu: The virus that is spoken about as transmitted by Ixodes or black-legged ticks, is the Powassan virus, which is also sometimes called deer tick virus. Powassan virus or deer tick virus are actually two different genetic lineages of very similar virus so let’s just call it Powassan virus. It was first described in the 1950s. Powassan virus can be very serious because in half of cases, 50% of cases, people have continued long-term neurological consequences and disability due to encephalitis, or inflammation of the central nervous system. The virus actually infects the brain. The fatality rate can be 10 to 20%, especially in the elderly, the immunocompromised or people with other health conditions.

The symptoms for Powassan virus are fever, vomiting, weakness, memory loss, and seizures. The diagnosis is made by doing a blood test or a spinal tap looking for antibodies against the virus. The treatment for Powassan virus is, as you said, it can’t be treated with antibiotics. They don’t work against the virus, so the treatment is mostly supportive. That is providing respiratory support, fluids, drugs to reduce brain swelling. Now, luckily Powassan virus is rare. There were 13 cases that were reported in 2013 to the CDC, so it’s actually not a really prevalent disease. It is found in actually a very low percentage of ticks, maybe three to 5% of ticks are co-infected with Lyme disease and Powassan virus, so it is there. It is present so we have to be concerned about it. Now overseas there are many more cases of a brain infection caused by ticks, there is tick-borne encephalitis, and that is also caused by a virus, a tick-borne encephalitis virus, that has been recorded and associated with serious illness.

Host: Obviously a lot of people haven’t heard of these co-infections spread by ticks, can you tell us about some of the major problems and how we cope with tick-borne diseases?

Dr. Hsu: One of the biggest issues is probably awareness. There are medical professionals who have heard of Lyme disease but may not have heard of these others.

Dr. Kotsoris:  Health authorities may not test for some of these if they’re unaware of them and then ordering the right diagnostic tests has to be done. The Lyme disease diagnostic by itself is highly inaccurate and so even getting that diagnosis is problematic. Without reliable molecular diagnostic techniques some tests are only available experimentally or at limited federal or state levels. Initial diagnosis is very difficult and you can’t sit around and wait for an antibody response, so physicians have to be better diagnosticians. They can not, as I said before, they can not sit around and wait for convalescent titers, antibody titers to indicate that the patient has had the infection. That’s four to six weeks after the initial infection. Until the FDA approves some of these experimentally available techniques, makes them more widely available to the frontline physician, we have to rely on clinical diagnosis.

Host: What about the treatment of tick-borne illnesses?

Dr. Kotsoris: It’s important to note the treatment for Lyme disease doesn’t cure the others necessarily, so proper diagnosis is critical to getting proper treatment that is specific for the co-infecting microbe. Also having two infections might make the symptoms tougher to treat. There are some research studies that indicate that co-infections actually make the illnesses more powerful individually. For example co-infections of Babesia and Lyme disease may make it harder to treat the patient than if he or she had only one of those.

Host: Are there other issues we should be thinking about with regard to tick-borne co-infections?

Dr. Hsu: I think there’s a lot we simply don’t know about the biology of co-infecting pathogens. For instance, we don’t understand a lot about how they grow in their host animals, more than one microbe. We don’t really understand how they get into a tick and how they survive in the tick, and very basic questions like infection of humans, from ticks to humans.

Host: Given all the lack of awareness, what kind of studies are needed to better understand and treat tick-borne diseases?

Dr. Hsu: There are some emerging illnesses now that are suspected of being caused by ticks but we don’t know for sure. We need more research. For instance, there’s a new illness that’s emerging called stari, S-T-A-R-I, and what that stands for is Southern Tick-Associated Rash Illness. We know that this is caused by a tick bite but we still don’t know what the pathogen or the microbe is that is responsible for the illness. Diagnosis, which we talked about is sometimes complicated. Some of the technology to diagnose some of these co-infections, like really sensitive molecular biology, looking for the DNA of the organism, is not readily available in some parts of the world.

Dr. Kotsoris: Travelers to other parts of the world may come home to the United States where the best of medical care is apparently available and doctors here may not know about those tick-borne illnesses, so education has to be a big part of it.

Host: Tick-borne diseases are a very big problem. Let’s hope that public health officials and the funding organizations take them seriously, especially since climate change is going to mean more sick people, more school and work absences, less productivity, and have a huge economic impact. Thank you for all the discussion today and thank you to all of you listeners.

CLICK HERE to listen to the entire podcast.

A Matter of the Heart

by Jennifer Crystal

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.

blog_jennifer crystal_matter of the heart_lyme carditis_quote

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.


jennifer-crystalOpinions 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 jennifercrystalwriter@gmail.com

Podcast: Lyme Disease and Tick-Borne Co-Infections

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.


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