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marisol thomas

Marisol Thomas: Existing with Late-State Neurological Lyme Disease

Below is Marisol Thomas’ Honoree speech given at the 2017 Global Lyme Alliance New York Gala on October 11, 2017, printed in full with her permission.

When the Global Lyme Alliance reached out to me to say they wanted to honor me, my first instinct was to say no.  Actually, my first instinct was to run and hide.

I’m not the usual success story that you hear about in these speeches.  I’m not at the end of my long journey.  I’m deeply in the midst of it. To be completely honest, I’m in pain right now, and I was actually so worried that I wouldn’t physically be able to make it here tonight.

I don’t like to lie. And when I was approached to be honored, I feared that by accepting it and standing up here in front of you all, it would be just that. A lie.

Even after I agreed to be a part of this amazing evening, I had second thoughts every day. I kept thinking that if everyone could see me on the days and days that I spend in debilitating pain unable to get out of bed, they would realize that I shouldn’t be here.

Marisol Thomas
Marisol speaking to the more than 700 people in attendance at the 2017 GLA New York Gala

Then, just after my husband and family had convinced me to do some interviews to talk about what I’ve gone through, things shifted. I started to hear from other voices.

Voices that sounded like me. Some who have been in this same struggle, fighting to hold on just one more day. Some that have lived in pain for so long, having no idea what’s happening to them, that they start to believe maybe they’re going crazy. People who have spent decades going to the best specialists around the world and still have no answers.

These people started to reach out to me, thanking me for sharing my ugly story because it either helped them finally start to look in the right direction or just to simply say that it felt good to know that they weren’t crazy and they weren’t alone.

I have late stage Neurological Lyme Borreliosis, Babesiosis, Bartonella, and a host of other coinfections. To make things even more challenging, I also have Hashimotos Thyroiditis, an autoimmune disease that was triggered by the Lyme infection, when it unbalanced my immune system sufficiently to trigger the autoimmune mechanism.

Living with these multiple diseases has quite literally stolen my life. I went from being a happy and fulfilled person to just existing. There isn’t a day or even a moment where I’m not in pain. Many days so excruciating that I lose track of the hours that have passed.

On the days where people see me out and about with a smile, they don’t realize that I’ve just learned to function at a level of pain that most people couldn’t imagine. Each day is about surviving somehow.

My Mom’s daily mantra and mine has become JSS. Just Survive Somehow. This disease has affected my family and all my relationships in such a huge way that it pains me to even talk about it.

As someone with late-stage neurological tick-borne disease, I have joined a club of people with a stigmatized illness.  One that many don’t understand or want to believe. And that many doctors don’t even want to treat.

Having this disease feels like Groundhog Day in constant pain. It feels like you’re standing still just existing, unable to participate, as the world continues without you.

With fellow Gala Honoree Joseph Abboud

It is extremely isolating and you feel completely alone, as no one, not even the people who love you most, can understand the pain you live in every minute of your life.

So sadly many times, along with struggling to survive, you also feel the need to defend yourself daily. Desperately hoping to be believed.

The heartbreaking truth is that you will lose people on this journey. Some who can’t believe that anyone can be that sick with so many different symptoms for so long. Some who just get tired of you canceling plans at the last minute. And some that just can’t understand why you don’t get dressed, go out and get over it.

The sad reality is that when people don’t understand something, most of the time they don’t believe it. Nobody can really understand unless they have gone through it.

Those who stay, who really love you, who really want to help and try hard to understand your situation, still can’t grasp what you’re feeling, and many days you’re left feeling isolated and lonely in spite of all their efforts.

This leaves us feeling a tremendous amount of guilt. I feel guilty for being sick. For letting the people I love so much down time after time.

I have no control over it, and it’s not my fault, and yet it crushes me. Because I know my illness affects everyone around me.

As grim as my current situation is, I am one of the lucky ones. I have doctors who are willing to provide open-ended treatment and stand by me, no matter how long or how many twists and turns this journey takes me on.

And I’m also blessed to have a great support system.

I have a core group of wonderful people that have literally saved my life. Even though they probably don’t really know it.

My closest friends, don’t realize that just by sending me a text letting me know they are thinking of me, and are there for me, can brighten my day even when I’m unable to respond.

Getting weekly pictures and videos of my beautiful nephew Gavin, who I don’t get to see as often I want, helps me still feel a part of his life.

My Mom and Dad who have sacrificed so much in their lives to make sure I got all the opportunities they never had. And now continue to sacrifice trips and dinners, just to make sure they are always here for me.

My dogs…my boys…which, if you know me, are my world. Whose unconditional love, give me a reason to get out of bed some mornings.

Marisol’s husband Rob Thomas performing with Chris Daughtry

And last but certainly not least, my husband, who is not only my best friend, but also literally my other half. No one will ever understand how much he has sacrificed in order to be with me all these years.

They have no idea that moments before he goes on stage in front of 15,000 people, that he was just on our bus, administering some medical therapy on me, that he learned and perfected better than most nurses I’ve ever met. Only to go and finish his show, jump off the stage, and come right back to help take care of me and our boys, who as luck would have it, are special needs as well.

His fans think he’s a wonderful person and they’re right. They just don’t know how right they are.

But I know that many people out there are not as blessed as I am to have this kind of love and support.

They are suffering in silence with nowhere and no one to turn to. I have cried learning how many suicides occur due to how unbearable life becomes for some and having no one believe them. They just want relief from their pain, and for someone to believe their story.  This is all any of us want.

So after struggling so much with accepting this honor, it is for all those people out there suffering and feeling alone and isolated, that I decided I must not only keep fighting, but also help bring awareness to this very real, very life threatening disease that is so stigmatized and misunderstood.

Connecting with fellow Lyme warrior Yolanda Hadid

It was my own feeling of isolation that led me to Yolanda’s book. I used to love to read so much. I was always buried in a book. But for the longest time it has physically hurt me to try to focus on the words on a page due to my visual disturbances, and sadly I just slowly stopped reading.

But I found a way to read her book from cover to cover. There was a sad irony in reading about someone else’s struggle while the simple act of reading itself put me in excruciating pain, but seeing someone else’s pain mirroring mine helped me to focus. And it was the first book I was able to read in over two years.

That’s when I realized what the word ALLIANCE in GLOBAL LYME ALLIANCE truly stood for.

For those of us who live with this disease that makes us feel so alone and isolated, to find a group of people who feel exactly the same way and still find a way to get up every day to continue to fight to get to other side, somehow gives you strength.

Sometimes having an alliance to support you is the difference between those of us that make it and the far too many who don’t.

So while I don’t feel much like someone who should be honored here tonight, I do feel that it’s an honor to be a part of this amazing alliance that is fighting tirelessly to give us a voice and help find a cure. So that others won’t ever have to suffer this way again.

So thank you for allowing me to be a part of something so much greater.


Watch Marisol’s Speech


Marisol’s speech moved the more than 700 people in attendance at GLA’s 2017 New York Gala–both patients and non-patients. For patients, they identified with Marisol’s moving and heartfelt words. For non-patients, they got a very real glimpse into living with Lyme disease, including dismissal by doctors, the daily struggle to exist, and the impact it takes on the patient’s circle of family and friends. Special thanks to Marisol Thomas for giving permission to Global Lyme Alliance to reprint her speech from GLA’s 2017 New York Gala. Mari, we honor and thank you.

Loving Yourself Through Lyme Disease

by Susan Pogorzelski
#MyLymeLife

Living with Lyme disease can damage both your body and your soul. How do you take care of yourself, emotionally?

 

This May it will be five years since I was diagnosed with chronic Lyme disease and 20 years since I first started getting sick. Sometimes, I look at those numbers, look back on all the years, and I’m speechless. I don’t know how I’m still here, but I am. And I intend to stay.

Today my dad and I drove down to Maryland to see my new Lyme doctor. His wife also has Lyme and—like my first doctor who saved my life—I liked them immediately. He sat and listened to my story, asking questions about my symptoms and then examined me.

“How long have you had these stretch marks on your abdomen?” he asked.

“For as long as I’ve been fat,” I joked. Then I explained how I put the weight on—a lot and quickly—since I’ve had Lyme, and again when I relapsed.

“They’re going the wrong way for stretch marks,” he noted.

I looked at him, somewhat surprised. “Bartonella rash?” I asked.

“Bartonella rash,” he confirmed.

My body is what I’ve been the most insecure about since dealing with Lyme. When I was sick with mononucleosis in middle school I “blew up,” so to speak, gaining weight rapidly, unable to lose it. Eventually, when I was in high school, I did lose it all and rather quickly. I only wish now I had been more confident in who I was back then. Now, all these years later, I wish I could match what I feel on the inside—strong and brave and beautiful—with the outside, when all I see when I look in the mirror is someone who’s tired and weighed down by this disease.

Ah, but isn’t that just the way it goes?

Now that we’re able to recognize that bout of “mono” as my first brush with Lyme—now that I’ve experienced my second rapid weight gain—I’m starting to understand how this illness ravages the body and the mind. Stubborn weight gain is not unusual in that the bacteria damage the metabolism, thyroid, adrenals, and gut. It’s disheartening, truly. It feels like no matter what you do, it won’t make a difference.

Except it all makes a difference. I’m not going to lose the weight until I start getting better from this disease, I know that. But that means I need to reaffirm my dedication to my recovery—eradicating the infections with a new cocktail of antibiotics, reducing the inflammation with nutrient-rich foods and supplements so my organs start doing their jobs, and building my immune system strength so my body can learn to fight on its own again. It also means more patience on this journey, continued self-care.

I’m not doing anything wildly different as far as a treatment plan. Tweaks to the antibiotics, changes to the supplements, re-focusing on healthy foods, and exercising only as much as my stamina and the illness will allow. But once again I’m armed with renewed hope and determination. Once again, I’m ready to do what it takes to be healthy again.

Or, you know… For the first time.

This disease has been hell in so many more ways than one. It’s broken me time and time again, over and over. But it’s also forced me to face what I didn’t want to face, making me into someone I hope is better and bolder and stronger.

These past five years, I’ve spent so much time healing emotionally and spiritually. I’ve spent so much time trying to build back everything I’ve lost. I’ve spent so much time rediscovering who I want to be and learning to believe in and love who I already am inside.

Now it’s time to accept and love who I am outside. It’s time to accept and love my body for all it’s been through, to forgive myself for what it is right now.

Love is love
reflected inside and out.


Opinions expressed by contributors are their own.

Susan Pogorzelski is the author of “The Last Letter,” a semi-autobiographic novel about her struggle to find a Lyme diagnosis and subsequent journey through recovery.


 

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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.

Dear Lyme Warrior…Help!

by Jennifer Crystal

Every couple of months, Lyme Warrior Jennifer Crystal will devote a column to answering your questions. Here are her answers to some frequently asked questions she has recently received.

 

Do you have a question for Jennifer? Email her at jennifercrystalwriter@gmail.com.

How long did it take for you to get better?

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.


jennifer-crystal

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

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.


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

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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