Christina Kovacs, Creator of LadyOfLyme.com, Interview

Written by Super User.

Christina-Kovacs

Christina Kovacs is a friend of the Tick-Borne Disease Alliance and the founder of www.ladyoflyme.com where she blogs about her personal life and her treatment as a Lyme patient

1. When were you first diagnosed with Lyme disease? Were you diagnosed with any other tick-borne diseases? If so, which ones?
I was first diagnosed in September of 2011. I also found out I have Bartonella and Protomyxzoa (FL 1953), two other tick-borne diseases.

2. How long was that after you first developed symptoms or found a tick?
 That was 5 years after I began having symptoms. In the summer of 2006 I came down with what I thought was just a Summer flu, but I later learned was the first signs of Lyme disease. Things were never the same after that point, but no doctor thought to test me for Lyme until I got my diagnoses in 2011.   

3. What steps have you taken to help cope with your symptoms, both physically and online?
 The first thing I did when I finally got a diagnosis was research online about Lyme disease and other tick-borne illnesses. It gave me a sense of relief to learn that all these symptoms I am having are indeed linked to something and I would get better. Up until that point I was just very sick with no tangible answer. The best part of searching online was meeting other people who have been through the same thing and could offer advice and support. Tick-borne illnesses come with a wide array of symptoms, so being able to talk to others who get it and share tips for relief was a major blessing. An extra bonus was I met some inspirational people who had crossed the finish line & reached remission. It gave me the courage I needed to begin treatment & also something I could reflect on when I had a tough day. Just knowing that there is a light at the end of the tunnel is hands down the best way to cope.

4. How does encouraging and connecting with others in the Lyme community help you deal with the disease in yourself and/or your loved ones?
 I believe that knowledge is power, and the more you know about this illness the better arsenal you have against it. When you get diagnosed with Lyme disease you are thrown into a world with so many questions and not many answers. This is where connecting with those in the Lyme community was a true blessing. I was able to learn so much about Lyme and tick-borne illnesses from talking with others and vice versa. Once I felt like I had control of this disease, versus it having control of me, it changed how I could deal with challenges put forth.


5. What do you think is the most important thing about Lyme and other tick-borne diseases that the average person who hasn’t been affected by them doesn’t know and should?
 That ticks carry more than just Lyme disease. Although it’s the most talked about tick-borne infection I have never met a person with Lyme who has that alone. They will always have one or more tick-borne illnesses as well. Most ticks are infected with a multitude of diseases, and it’s really important to know that. Bartonella, Babesia, Ehrlichiosis, and many others can wreak havoc on your body, and are not to be taken lightly. Protecting yourself with a tick-repellant & doing full body checks when you come indoors is important no matter where you live. I want to emphasize that disease-carrying ticks are EVERYWHERE. They are not just secluded to the northeast.

6. What has been the most difficult challenge for you in coping with this disease?
 Personally, I had a hard time with putting my life on hold. I got into my dream school in Los Angeles, so I moved out there and began to study and intern in a field that I loved. However, this was the same time that my body began to fail me, and I didn’t understand why. I went to some of the top doctors across Los Angeles, but none of them could help me. I reached the point where I had to move back to Kentucky and leave behind everything I loved. I was still stubborn enough to keep up with online school while my parents and I drove all over the East Coast searching for an answer. By the time we got a diagnosis I had burnt my rope at all ends so to speak. Suddenly here I was at 23 years old with no career, living with my parents, and spending most my time locked in a dark room. It was a scary and hard place to find myself because it came so quickly. I knew this would be a long battle, and I wasn’t sure how to handle my life doing a 180-degree turn. It was a huge challenge to adjust to life with a chronic illness. No one can prepare you for the kind of emotional toll it takes.

7. How did you rise above it?
 I’m a very faith driven individual. I found peace with the situation by realizing this is part much bigger plan for my life. I also joined Lyme support groups and connected with people my age who were going through the same things I was. Finding people who understood me was incredibly therapeutic and helped me not feel so alone in this battle. Along the line I made two friendships where if you took the illness out of the equation we still would be great friends because we got each other on every level. I could talk about struggles openly which they faced too, and still share laughs about every day things. It was a turning point where I truly rose above my challenges because it reminded me that Lyme did not define me, and it wasn’t who I was. Although my life had been altered from the norm I actually still had a lot of parts of me very much in tact. Before, I compared myself to my friends who were living normal lives, and when I did that it just reminded me how “abnormal” I was in comparison. I finally stopped comparing my life now to my life before Lyme, and found peace...I fully credit those friendships for that. I strongly recommend connecting with others if you are suffering from any tick-borne illnesses.

8. What would you like to see change in the future in relation to Lyme and other tick-borne diseases?
 Hands down I would say I want to see a change in how patients of tick-borne illnesses are treated. Across the board from Doctors, Senators, family/friends, I want to see all tick-borne illnesses get the recognition they deserve for being deadly life altering diseases. Right now patients have to fight to get proper care or to be taken seriously when they are in insurmountable amounts of pain. I want to see the day when people get respect and help for the hurt they are going through. That’s why Bite Back for a Cure was such a perfect fit to get involved with. I believe in this mission 100%, the first step to getting adequate care is to take the message to Washington where real change is made.

 

9. Do you have any favorite holistic methods that you use to alleviate and reduce your symptoms that you’d like to share?
 My go-to item is a supplement called Burbur. It’s an herbal tincture used for detoxification that has saved me from the grips of an awful herx many times. It comes from the Burbur leaf and drains the kidneys, liver and lymphatic system. It works as a quick and powerful detox that I use when I start to feel myself slipping under and feeling terrible. If I could only keep 1 single supplement out of everything I had, I would hands down choose Burbur, because it’s quick, its gentle, and it works every time.

10. Is there anything I didn’t ask, but you would like others to know about Lyme and other tick-borne diseases?
 This isn’t specifically about Lyme, but I want to touch on the topic of how crucial support is for those suffering, because the symptoms aren’t always visible. To everyone out there who has a loved one with Lyme disease & co-infections, I want to say that the most important thing you can do is believe them. Having an invisible illness means you look perfect on the outside while being broken on the inside. It comes with a lot of judgment from others, and feeling like you have to constantly prove yourself to feel understood. Having someone say, “I believe you” is most powerful thing you can hear.

 

Christina Kovacs is a friend of the Tick-Borne Disease Alliance and the founder of www.ladyoflyme.com where she blogs about her personal life and her treatment as a Lyme patient.

 

A few words about John Donnally

Written by Matt Smink.

bikes-sunsetPlease think of me as a messenger, a carrier of peoples’ stories, so to speak. I’m biking across the country to listen to and share the stories of those affected by Lyme disease and all tick-borne diseases (TBDs), illnesses that can be complicated, overlooked, and just plain uncomfortable to talk about. In my view, we—the Lyme and TBD community—haven’t told and shared our stories effectively. We definitely have not been fully heard and truly seen. My mission on this trip is to learn why that is, maybe even to change that; and to empower some people along the way.

Some initial questions I have in mind for this journey: Why does this epidemic (Lyme and all TBDs), which affects at least 300,000 people a year, seem hidden? Why are many patients reluctant to talk about their illnesses? Why aren’t Lyme and TBDs cool diseases to have? Who owns these diseases? Why should anyone even care about Lyme? And what does all of this mean to us—the people who live and suffer with these diseases?

I’m not sure what I’ll find yet, exactly. Maybe listening to and sharing the stories of patients from a whole range of diverse backgrounds will elicit some new insights into our understandings of these diseases. At the very least, being visible and verbal about what we’re going through seems like a good place to start. I, too, had a bad case of Lyme disease and still deal with various symptoms that stem from that infection, so I’ve got some skin in the game. This is not my bike ride, though; it’s ours. 

But, to make sure people are comfortable with all of this, specifically with me being the narrator of this journey, I think it’s important that I’m open about some of my anxieties about this trip. Future posts won’t be of this autobiographical sort, I promise, because it’s not about me, but right now, it’s just me here—

And I’m sitting in a totally packed Gate C86 at Newark International airport, killing the hour before my flight out to San Francisco by trying to summon up and write down my feelings about this cross-country ride. What’s the analogy for what I’m feeling? The anxiety of going away to college is close but too weak. I was a diligent student joining a class of 700 presumably like-minded kids, attending a school just a few hours drive from my home, and even rooming with Brent McDonough, my best friend since I was three-years-old. That was actually a pretty comfy transition, now that I think about it. This journey’s different—it’s become something that’s at once very personal, totally public, and intimately shared. It’s also daunting. 

Lately it feels like I’m regressing, not health-wise but behaviorally. I’m doing things I haven’t done in several years: chewing on my lower lip, wringing my hands under dinner tables, even twirling my damn hair, all unconsciously. This is the stuff of pubescent boys. 

I’m nervous, excited, distracted, possibly unqualified, and wildly curious. It’s more than those things, though. It sounds paradoxical, but it’s like my reverting back to these juvenile habits is a sign that I’m ready for growth. It’s like going through puberty but the changes aren’t physiological; they’re influenced by other people—people I don’t even know yet. I’m focused on these people, blocking out things that aren’t essential to them, and preparing to be expanded by their stories.

But my flight’s just been called, and now I’m grinning like an idiot, laughing to myself, thinking about all the people I’m going to meet.john-in-california

Q&A With John Donnally, Pt. 3

Written by Super User.

In this three-part series meet John Donnally, the 24-year-old cyclist biking across the country to raise awareness for Lyme and other tick-borne diseases.

Something comes out of nothing:
 

As many TBD sufferers know all too well, big things can come from humble beginnings. I’d like to apply this knowledge to create something positive and far-reaching. Paralleling the process by which a tiny tick the size of a poppy seed infects its host, a quiet process that’s localized and oftentimes doesn’t leave a visible trace, this campaign, which starts with one organization and one guy biking across the country, can become infectious; it can spread to every state, bring together the TBD community under a common cause, and put these illnesses and those who suffer from them on a national stage. I see these northeast training rides as the points of transmission for this infectious campaign, the first bites back, so to speak.

This project has been growing inside of me for more than a year now and it’s born out of my own personal struggle with Lyme disease, the desire to help fellow TBD sufferers, and a deep love of people and their stories, so it’s with serious gratitude and awe that I’m living this dream. The success and reach of this project depends almost entirely on the support I receive from the people who get involved (and the number of people who get involved), so as I prepare to bike across the country, my heart is full of love and gratitude for those who have made this all possible. TBD sufferers are the purpose and fuel of this bike ride—I feed off of their stories and positivity. I encourage you to reach out to me during the trip and send me your thoughts. I hope this bike ride can bring people together under a common cause, and maybe even create a national TBD support system, something that many of us missed during our loneliest days with these diseases. Support should come digitally through Facebook, Twitter, and email, but I’m also looking for people to meet, speak, and stay with as I make my way across the country, so if you’ve got a story you’d like to share and/or a couch I can crash on, please let me know!   

Lacrosse, Coaching? Where? What age group? 

I find myself using a lot of the things I’ve learned as a lacrosse player and coach as I prepare for this journey. I played lacrosse at Colgate University, and while I had to fight off some Lyme-related setbacks throughout, it was an amazing experience and one that will prove crucial to the success of this trip. The ride is all about determination, mental toughness, and doing something hard for the people and cause you believe in. While I was at Colgate, Coach Murphy challenged his players to “dare to be different”, and it is in the spirit of this challenge that I’m taking action for something very close to me.

This past spring I coached high school lacrosse at Morristown-Beard, a school in Morristown, N.J. I really enjoyed my experience as a coach and made many meaningful relationships with my players. Making the people around me better and seeing improvements in kids because of something I’ve said or done is incredibly rewarding. Lacrosse has had such a positive influence on my life, so it’s really cool to be able to give back and see kids genuinely enjoying themselves and fully immersing themselves in the sport. There’s nothing better than seeing young people happy.

An Irony:

There’s an irony that attends this cross-country bike trip: I was sort of a spaz on the bike growing up, was always falling off and hurting myself, and I experienced some of my most embarrassing wipeouts on Nantucket, where I spent every summer. I used to think I was very lucky because the thick Nantucket brush usually cushioned my falls. Looking back, I recognize this brush was probably alive with ticks, so my bike riding as a kid may have actually led to my getting Lyme disease. So I’m kind of coming full circle now and coming to grips with my past and facing my fears on a couple of different levels.

I’m a much better cyclist now and will be wearing DEET throughout the trip.

Q&A With John Donnally, Pt. 2

Written by TBDA.

In this three-part series meet John Donnally, the 24-year-old cyclist biking across the country to raise awareness for Lyme and other tick-borne diseases.

How has Lyme affected your life? 

Lyme disease has doubtlessly and significantly changed the course of my life, and I can’t really say if it’s for better or worse- it’s just different. My relationship with Lyme is a complicated one. It has been, at times, a seriously lonely and alienating journey, but it’s also connected me with many beautiful, wonderful people. While it has paralyzed my mind and numbed various parts of my body, it has also opened me up to amazing opportunities and has become the inspirational fuel for my journey across America. It’s a disease that, at times, has muddled my mind and deadened my senses, but it has  also made me more certain about the things I care about and love in my life.

 My case is an extremely fortunate one. Many patients never get better. Frankly, I’m terrified of ticks and consider myself lucky. 

Some patients say they wouldn’t change a thing about getting a TBD, and I think this is an amazingly positive outlook. I think I would change some things, but I’m determined to use my experience to rectify the many problems surrounding these diseases, so that others don’t have to go through what thousands before them have endured already.

Why are you doing this bike ride? What have you been doing in recent years?

I graduated from Colgate University in Mayof  2012 with a degree in English Literature.I wanted to embark on a journey across America that would both bring attention to Lyme and other tick-borne diseases (TBDs) on a national scale and allow me to connect with fellow sufferers on a deeply personal level. Lyme disease is an illness that I am strongly emotionally and personally tied to: Aside from my own experience with the disease, both of my parents, my younger sister, and most recently, my aunt, have all suffered from this pernicious and seriously overlooked national health endemic. When I finished school, I wanted to give my whole person and presence to this important national issue, to seize the freedom of my youth by doing something immersive and hopeful for it, but I’ve got to admit, in the spirit of full disclosure, that I didn’t pursue it, not for six months, opting instead to do something more practical and realistic, less close to me. But I couldn’t shake the idea, and this disease, which had ravaged my body for years, followed me wherever I went and made itself known in the people I love. I had to take action. As I was working as a sales consultant in NYC, I began drafting an outline for my project and finally, in December, I mustered the courage to commit myself to it and make it happen.

 I decided that, starting in August, I would bike across the country to raise awareness about all TBDs and to generate funding for new research. An important part of the journey would be meeting, interviewing, and staying with TBD patients as I made my way across America. I really wanted to focus on listening to and connecting with Lyme and other TBD patients. TBDs are illnesses of great controversies and divisions; listening to and sharing stories of patients across the country, I think, is a way to find resonance and create a sense of community. I am hoping that in listening to patients from a whole range of geographic, economic, and cultural backgrounds, I’d learn more about what these diseases are and what they mean to the people who suffer from them. These stories, in my view, are some of the most powerful instruments of change. I wanted to translate these ideas into a national campaign that would put TBDs and their sufferers on a national stage. 

To make this project a meaningful success, I recognized the obvious value in combining my personal passion and youthful energy with the results-driven approach of a national TBD organization. In February, I partnered with the Tick-Borne Disease Alliance (TBDA), an amazing national advocacy organization committed to raising awareness about and developing a cure for TBDs and, importantly, uniting the nation in this fight. My cross-country bike ride has since become the focus of their Bite Back for a Cure campaign, a national grassroots initiative focused on generating support for the fight against TBDs. My journey begins this summer when I’ll be doing fundraising training rides in Martha’s Vineyard, Mass.; Southampton, NY; Central NY; andAnnapolis, MD. . My cross-country ride begins in California on September 28th and ends in Washington D.C. in early December.

  

Q&A With John Donnally, Pt. 1

Written by TBDA.

In this three-part series meet John Donnally, the 24-year-old cyclist biking across the country to raise awareness for Lyme and other tick-borne diseases. 

When and where were you first infected with Lyme? 
 

 I had a lot of exposure to ticks growing up. Right across the street from the house I grew up in, in Madison, N.J. was a small forest—what some might now call a Lyme disease reservoir—and pretty much every day I’d see deer traipsing across our front lawn. Being a young Davy Crockett growing up, I was always outside exploring the nature that surrounded my house; playing manhunt with my neighbors, hiding in bushes and in the forest across the street, playing sports in my yard, paintball in the woods, chasing the neighbor’s dog, etc. I spent my summers in Nantucket, which most people regard as a real hotspot for ticks. Overall, I had a ton of exposure.I remember finding ticks on my body but never thought something so unimpressive, so tiny and seemingly harmless could ravage the human body and destroy peoples’ lives. 

My story, like the stories of many Lyme patients, is a long, complicated one.. I was 13-years-old when I first received a CDC positive test for Lyme disease, but I had been suffering with a wide-variety of troubling health issues since I was nine. Doctors couldn’t identify what was wrong with me and they knew very little about Lyme and other tick-borne diseases, though we lived in an endemic area. Over four years, I was sent to several  specialists, misdiagnosed with other sicknesses, and finally told to simply “get over” my symptoms. I hope this doesn’t sound familiar.
 
My family had heard about Lyme disease, even knew people who had suffered from it, but really didn’t know much about it. It wasn’t until half of my face went paralyzed that I even was thought to be tested for Lyme.  I consider this classic, visible expression of Lyme disease and my positive blood test to be blessings that many patients don’t experience.. Like most people, my family assumed when I was diagnosed with  Lyme disease that I’d simply  take antibiotics for a couple weeks and rid myself of Lyme, forever. We found out, as many others do, treating a tick-borne disease is rarely that straightforward.

After a fairly successful initial treatment with three weeks of antibiotics, I experienced only a few lingering health problems in high school, until previous  symptoms returned, gradually at first, when I was 21-years-old. After about a year of trying to dismiss and push through some  alarming and increasing health issues, I felt that I might be having another bout with Lyme disease. My infectious disease specialist didn’t agree, and with both the history of my illness and my positive blood test in his hands, he told me there was nothing to the Lyme disease hysteria and left me with a warning of the chronic Lyme disease crowd, a rabble-rousing crowd that complained about medically unexplainable symptoms and ridiculed perfectly knowledgable  and virtuous doctors. And so, I sought answers from a neurologist, chiropractors, and an ophthalmologist, all to no avail, as my symptoms grew  worse.  Finally, two years ago, with a constellation of symptoms, I was connected with a doctor who diagnosed me with late-stage Lyme disease. After several months of treatment, I felt much better, and while today I still deal with persisting symptoms that stem from Lyme disease, I feel quite healthy. I have been incredibly fortunate.

My experience points to the many shortcomings in the medical community’s understanding of these illnesses and public consciousness about tick-borne diseases. Even with a CDC positive blood test, classic tick-borne disease symptoms  symptoms, and exposure to recognized endemic areas, doctors still misdiagnosed my case and left me without treatment for far too long. I was a total layup, a slam dunk for Lyme; So what happens to someone without the positive blood test, or someone who got sick in a state where tick-borne diseases  aren’t even part of the differential diagnosis? I’ve learned that there’s no such thing as a layup in diagnosing a TBD- they’re too complicated, and there is too much we don’t know about them. The unreliable diagnostic tests, the lack of awareness and knowledge, rigid guidelines that are so lacking in nuance, and the stigma that’s been attached to TBD sufferers have created an environment where a meaningful number of patients fall through the cracks and are forced to live their lives silently suffering. The current situation is unacceptable and must be rectified. 

Don't Let Ticks Ruin Outdoor Fun

Written by TBDA.

 Early fall boasts some of the best weather of the year with temperatures that aren’t too hot or too cool. This makes it a perfect time to head outdoors with friends and family for hikes, bike rides and picnics.  

For U.S. residents living in the northeast, mid-Atlantic, and upper north-central regions, ticks, and the diseases they carry, may put a damper on outdoor fun.  This doesn’t have to be the case! With proper knowledge and a few prevention tips, everyone can embrace and enjoy nature. 

Ticks are ectoparasites, or parasites that live on the outside of their host. They are not insects, but are closely related to mites, spiders and scorpions. Ticks can be very small, varying in length from 1/8 to 5/8 of an inch long. They are usually a shade of brown, so they may be difficult to spot on the skin or even misidentified as a mole. Common problem tick species include the American dog tick, deer or black legged tick and lone star tick.  

There are four stages in a tick’s lifecycle – egg, larva, nymph and adult. Ticks have only six legs during their larval stage and eight legs during their nymphal and adult stages. They consume blood meals during all stages. Pathogens, or organisms that cause diseases in the animals they infect, can be passed through each stage of a tick’s lifecycle. Females and males of most species feed on blood of mammals, birds and reptiles. 

The Centers for Disease Control and Prevention (CDC) recommends avoiding areas with a lot of plants and leaf litter, but that’s hard to do when you’re hiking through woods. Instead, try sticking to the center of the trail and use a repellent containing 20 to 30 percent DEET on your exposed skin. The CDC also recommends treating clothing and gear with products that contain permethrin, or wearing clothing that’s already pre-treated.  It is always best to wear long-sleeved shirts and long pants when working outdoors near woodlands, fields and areas with shrubbery and tall grass.  Choose light-colored clothing so ticks are easier for you to see, and tuck pants into socks or boots to prevent ticks from crawling under pant legs. Always check your body and your pet’s body right after spending time outdoors in wooded or grassy areas. You should also bathe or shower as soon as possible after coming indoors to wash off and more easily find crawling ticks, before they bite you.  

Correctly identifying the various tick species is a critical step in managing the populations in your yard, which is why it’s important to contact a pest control professional like Orkin.  You can make your yard less attractive to ticks by clearing shrubbery and grasses and mowing your lawn often so the grass is short. Then, consider contacting a pest-management professional to complete the treatment. 

If you do find a tick on you or your pet, remove the tick with tweezers only (bent, “needle-nose” tweezers are best).  Using alcohol, nail polish, hot matches, petroleum jelly or other methods to remove ticks may actually traumatize ticks, causing them to regurgitate and infect you with disease or bacterium.  Also, do not squeeze ticks.  Gently, but firmly, lift them at the head with the tweezers.   

With the proper knowledge and some prevention tips, ticks don’t have to ruin your outdoor fun. Get outside! Enjoy hiking, biking and all your favorite outdoor activities before cold winter temperatures drive you inside your home! 


Kim Kelley-Tunis is the Diector of Technical Services for Rollins, Inc., parent company for Orkin.

 

 

Fighting For My Life, Awareness & Understanding

Written by Super User.

Tick-borne disease takes active human beings with healthy, full lives and replaces them with debilitating physical problems, cognitive/neurological issues and an overall significantly poorer quality of life. For the last several months while I’ve been on treatment, I have been angry at how horribly inconvenient this disease is. It ruins my plans, my family responsibilities, my daily routine and my social life. I am frustrated that I can't trust my mind to work the way 
I'm accustomed to it working. There are days when I can’t recall a recent memory that my family or friends are talking about and sometimes I can't even remember how to spell simple words. I can barely think in complete sentences when the pain strikes and if it's accompanied by nausea, my day is completely wrecked. This illness is terribly unpredictable and I absolutely HATE that. I hate that I have had to cancel and drop out of things I committed to do, all because of my physical limitations. It is a horrible feeling to know that just about everything, including my passions and the loves of my life, are affected by my disease. 

That being said, even with all of the horrible problems that come with tick-borne disease, I believe one of the worst problems I have encountered so far is the disbelief of others: the questioning looks, the "But you don’t look sick" comments that are so often heard by chronic Lyme sufferers, not to mention the continual inquiries as to when I’m going to get better.

Last year, I was having a terrible time finding a treatment that produced any results. I had tried everything with very little to no improvement. It was during this time that my disease was totally minimized in a way I had never experienced. I have had doctors tell me they weren't going to help me anymore or run tests for my "symptom of the week." They have asked my husband privately if I was making everything up and I have been told to my face that I am just depressed and need to see a psychiatrist. I have been made to feel like I was crazy and not really sick, even as my entire body was painfully aching and my bones felt like they might explode any minute from the intense burning pain. This feeling of abandonment by the medical community--and even society--is an isolated and lonely place. But for some reason, even though it was unbelievable, I chalked it up to doctors that were uneducated on tick-borne disease or who, instead of admitting that they had no idea what was causing my symptoms, wanted me to believe I was crazy/depressed and be ok with non-diagnoses like “Fibromyalgia” or “Chronic Fatigue Syndrome.” I could rationalize their reactions, especially when I finally got a diagnosis and blood test results that definitively and scientifically revealed that my body was
 definitely fighting tick-borne diseases -
and not just one, but three. My
 validation celebration was short-lived,
however because doctors continue to
question me. My primary care doctor
 still gives me cockeyed glances when I
 tell him about the treatment my LLMD 
is giving me - all because tick-borne 
diseases are ignored and myths are still 
perpetuated in the medical community. Doctors are not being educated on the scientific, factual evidence that supports that chronic Lyme disease not only exists, but is drastically under-reported.

One morning last fall, as I struggled to get out of bed with joint pain and muscle stiffness. It felt like gravity was against me and weights were on my back as I slowly got ready for the day. I was scheduled to volunteer at my girls’ school and I was determined to be there, despite my fatigue. This may not seem like a big deal, but most days I have to mentally and physically prepare myself the day before I leave the house for a two-hour "trip" to my girls’ school that is just down the road. When I get home from simple activities like going to the store or volunteering, I feel like I've run a marathon and it is vital that I don't schedule anything the next day, so I can rest up from my "day out." It feels like my body is a prison, from which escape is impossible. 

I arrived on time and sat next to another volunteer mother, as I cut out shapes and letters from colored construction paper. My mind was very foggy as I attempted to be friendly and talkative. I felt terrible and was very uncomfortable, but I pushed through the pain. As we chatted, something in the conversation led to the upcoming fall field trip and she asked if I was going. I told her I really wanted to, but my husband would probably go. Then she asked if I was the room mother for my daughter’s class. I told her briefly that I had been planning on it, but was unable because I had chronic Lyme disease and I couldn't trust my physical abilities from day-to-day. I didn’t even have time to regret saying the words "chronic" and "disease" before she said with a laugh, "Oh! Well, maybe that's what I have, too because I'm not feeling great today either." This was after telling me about how even though she is a stay at home mother, she has a part- time job, because she can't stand to be at home all day due to boredom and has too much energy, so she likes to keep as busy as possible. I used to be the same way and I cringed inwardly at the memory of “my life before Lyme.” The reality of just how much Lyme is not taken seriously hit me like a ton of bricks. I realized in that moment, that my mission was to educate everyone I knew about tick-borne diseases. 

For some reason, the flippancy of the words pierced me differently than other responses to my illness in the past. I know she was probably just uncomfortable talking about sickness and disease - most people are. She may have just meant to change the subject and I'm sure she didn't mean for her words to be hurtful. But because she was ignorant about chronic Lyme and tick-borne disease, the words hurt and invalidated me. I felt really small in that moment. I think it was made worse because it was coming from a woman, a mother - someone who is in the same stage of life as me so it really stung. It hurt to hear how others may view my illness. In a heartbeat, everything I go through was minimized. I felt like I was minimized... and simply because of the lack of awareness of chronic Lyme disease in our society. I'm certain if I had said I was in treatment for cancer, those words would not have been spoken. Our world needs to wake up to the fact that tick-borne disease is a deadly, fast-growing epidemic. We must not only educate for our own sake, but for the healthy who are not yet affected. 

The pain, frustration, and heartache that I have become accustomed to with this disease was laughed under one’s breath as if I had apologized for having a runny nose. She just didn’t know it was serious. One cannot relate to something that one knows nothing about. I would love to be on the other side of the conversation. I would give anything to not be the one who understands what it’s like to live in constant pain, but because I do and because I have experienced the loss of a healthy body, I want others to learn from my experience. 

Those of us who are struck down by this awful disease, we must raise our voices to educate our family, our friends and the world, so that ignorance of Lyme disease will be obliterated and awareness, education and advocacy will take it’s place. We must replace the outdated myths with facts and the lies with truth. We fight for our lives every single day and because of the ignorance in the medical community, we even have to be responsible for our healthcare, so we are the only ones who can tell others exactly what these diseases can do and how devastating it can be to have our lives ruined by a tick bite. We cannot afford to be silent about our struggle. No one will ever be able to fully “get it” unless they “get it,” but in the very least, they can learn a few facts about Lyme, so that when a stranger or an acquaintance mentions chronic Lyme disease, they will respond with love and understanding. My hope is that in the very near future, the truth about tick-borne diseases will become so known and acknowledged that this post will be obsolete and no one will be negatively affected by a lack of awareness of the disease. We must make the changes now so our children’s future and their children’s future is not affected by an ignorance and denial of a very real disease. 

One patient’s perspective

Written by Jennifer Crystal.

Originally published on boston.com.

Recently, I interviewed a local Boston doctor to see if he might be a good primary care physician for me. My requirements were fairly straightforward, ones that anyone would seek: a compassionate bedside manner, solid commitment to the patient’s long-term health, and admitting privileges at a top hospital.

The doctor met all of these criteria, but in the end, we were not a match. Why?

Because I was also looking for someone who could get behind my long-term treatment for chronic tick-borne diseases, someone who would be willing to work together with my Lyme disease specialist. This doctor told me he treats Lyme only by the book, and could therefore only meet me so far in his support. He follows the guidelines set by the Infectious Diseases Society of America and the Centers for Disease Control and Prevention, which state that most cases of Lyme disease can be treated with just a few weeks’ of antibiotics.

That, for me, was a deal-breaker.

As I outlined in an article I wrote for Boston.com last year,I was bitten by a tick in 1997 but was not diagnosed with Lyme and two of its co-infections until 2005.

By that time, the bacteria had spread to every system of my body and crossed the blood-brain barrier, damaging my central nervous system. Because the infection was so severe, long-term antibiotics were the only course of treatment that would work. Adjunct remedies like physical therapy, bioneurofeedback, nutritional supplements and dietary restrictions helped me on my path to wellness, but without long-term antibiotics, I never would have gotten better.

Three weeks of antibiotics would have only made a small dent against the infection that was waging war against my whole body. Cutting Lyme treatment short is like radiating a small portion of a tumor and leaving the rest to metastasize. No doctor would allow that for a cancer patient; why should it be acceptable for another illness that has been proven to self-replicate and spread?

One concern some doctors have is that long-term antibiotic treatment might do more harm than good. Letting an infection continue to spread untreated is arguably more damaging than any medication. Cancer patients are willing to lose their hair or suffer other adverse effects of chemotherapy because the alternative is far worse. The mentality is no different for patients with chronic Lyme, but luckily, antibiotics tend not to have such severe contra-indications. I personally did suffer from one of the more rare side effects, gallstones. Doctors are becoming more and more aware of that problem and are either using antibiotics that are not known to cause gallstones or are checking regularly for gallbladder trouble. A good Lyme literate physician will routinely run labs to make sure that vital organs are not being affected by antibiotic use. During my most intense periods of treatment, I had blood work done once a week.

Another concern is that long-term antibiotic use creates resistance, such that antibiotics won’t adequately attack other infections in the body. A good Lyme literate doctor is aware of this possibility and works to prescribe against it; he/she might change up antibiotics, or stick to certain families not used for more common infections. If teenagers can take years’ worth of antibiotics to combat acne, why shouldn’t the same be true for patients with a serious illness?

In the time that I have been on long-term antibiotic treatment, I have had two sinus infections and one ear infection. These infections responded to and were cleared up by short courses of antibiotics that were different from the ones I ordinarily take.

The doctor I interviewed admitted that I am living proof that long-term antibiotics work in the treatment of chronic Lyme disease. However, until he sees cases like mine published in a study—until he sees guidelines changed to meet growing patient evidence—he is not willing to step outside the box in his own treatment.

In many ways, I don’t blame him. Lyme is a politically polarized disease, and I understand that a doctor with no vested interest in tick-borne illnesses might want to avoid this quagmire altogether.

With tick populations on the rise, however, the Lyme disease predicament won’t soon go away. And the more cases that go undiagnosed and untreated, as mine did, the more patients are going to be turning up in doctors’ offices—maybe in the office of the doctor with whom I spoke—looking for answers.

So what is the answer? My experience tells me that the best defenses against chronic tick-borne diseases are prevention and early detection. The more people become comfortable with identification and removal of ticks, and signs of infection, the less chance they will have for that infection to be missed. Many cases of Lyme are misdiagnosed or undiagnosed because tests are unreliable. Moreover, not enough doctors know of early signs and symptoms to watch for.

Most Lyme disease cases that are caught right away can be treated with a few weeks’ worth of antibiotics. Patients who remain sick are not often ones who were treated immediately; they are patients who were never treated at all. They are patients like me, whose infections ran rampant for too long before accurate diagnosis and treatment. If more cases were detected early, the issue of chronic Lyme might not be an issue at all. Conversations like the one I had with the doctor in Boston would be moot. If I had been treated with a standard course of antibiotics back in 1997, I wouldn’t have chronic Lyme. I wouldn’t be fighting this fight. But I’m here, telling my story, in the hopes that it will become the exception and not the rule. And that’s something I think people on any side of the Lyme debate can get behind. 


jencrystalJennifer Crystal is a graduate student in Boston, where she is working on a memoir about living with chronic tick-borne disease. Last year, her team the Spirochete Smashers was honored by Senator Blumenthal for their dedication and commitment to the eradication of Lyme disease in the state of CT.

John Donnally, Bite Back for a Cure Cyclist, Part 2

Written by Super User.

John DonnallyJohn Donnally suffers from Lyme Disease. Despite his illness, John is an active cyclist and will be cycling across the country on the Bite Back for a Cure National Tour.

What would you like to see change in the future in relation to Lyme and other tick-borne diseases?

I think new scientific research that leads to 100% accurate diagnostic tests and better treatment options is crucial. Insurance that covers testing and treatment also has a real urgency; right now, patients either pay obscene fees or suffer. Both are unacceptable. Generally, I’d like to see increased physician and public consciousness about TBDs. Getting more accurate reporting, collaboration among national and local TBD organizations, facilitating conversation between opposite camps of thought in the medical community, and just creating more open dialogue about these illnesses, are all ways to raise public consciousness. 

While we crave coherence, the TBD conversation is a hurricane of controversies and these controversies must be unpacked and worked out by patients and physicians. We need to acknowledge that ambiguity is the rule when it comes to TBDs, and though we may not have complete control over the research and can’t wait on it, we can be open about our experiences. 

What inspired you to lead the charge on Bite Back for a Cure? 

Lyme disease is something I’ve had a long-standing history with, and for about a year I’d wanted to do something substantial to increase awareness about it. The reality I care about most is that people, right now, are unknowingly suffering with this silent killer, and I hope that my efforts can save them from going through what too many TBD sufferers have endured already. It’s an issue that so desperately needs attention and by partnering with TBDA, I think we can make a real difference. I want to use my whole influence—my athleticism, my mind, my youth, and my generally good health—while I still have it to put TBDs on a national stage. I’d like to really broaden the discussion of what these diseases mean by sharing the stories of TBD patients. 

Recently it’s been real interesting because almost every time I tell people about my bike ride, either they or someone they know suffered with a TBD and usually with a late-stage, multi-systemic infection. At first, I thought these encounters were just chance occurrences, but I now realize they are indicative of just how prevalent and threatening these diseases have become. I hope my involvement can help raise awareness about TBDs and generate funding for new research to eradicate this public health crisis.

This is the second part of a two part interview with John, be sure to read the first part if you haven't already.