Gregg Kirk is the founder of the Ticked Off Music Fest, and The Zen Engines, his band. Gregg has had an illustrious music career and currently lives in Connecticut.

1. When were you first diagnosed with Lyme disease? Were you diagnosed with any other tick-borne diseases? If so, which ones?

It took doctors two years of testing to finally diagnose me, and my initial diagnosis was for Lyme (borrelia) only. After being treated for only Lyme disease for a year and a half and not responding well to antibiotics, another doctor tested for co-infections and found traces of bartonella. A year and a half later I was also diagnosed with babesia.

2. How long was that after you first developed symptoms or found a tick?

I never found a tick – never had a rash. And because I was in such good physical condition at the time, it took a long time for symptoms to emerge. From the time I first noticed symptoms, it took two years of testing for me to get diagnosed.

3. What steps have you taken to help cope with your symptoms?

Initially, I attacked the illness with antibiotics, which gave me crushing Herxheimer reactions. It took years for me to find out I could take detox measures to reduce those symptoms, using herbs, changing my diet, exercising, etc. Daily meditation also works really well.

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?

At first I joined some online support groups, but I couldn't relate to the conversations that really focused on everyone's symptoms and misery. I was always more interested in breaking through the depression and bad feelings that can arise from the illness. It was only after I started feeling better that I felt compelled to reach out to others to let them know there is a light at the end of the tunnel... and that wallowing in despair is not the way out. I found the more I reached out and connected with others to make them feel better, I too felt 100 times better!

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?

Because tick-borne illnesses can be a collection of bacteria and parasites, the disease affects people differently, depending on their physical make-up and the bugs they've been exposed to. Not everyone gets a bulls-eye rash. I didn't. Not everyone gets a fever. I didn't. So if you ever find a tick on your body, start paying attention to the little physical changes that might happen in your daily life. As soon as you start to feel something weird or unusual, go see a Lyme literate doctor immediately. Waiting is not a good idea!

6. What has been the most difficult challenge for you in coping with this disease?

The symptoms can change your personality and make you more reclusive and withdrawn as a person, while on the outside you still look like the same individual. That's difficult for people not dealing with the disease to cope with, and it can really damage personal relationships. I used to brew my own beer, and I became sensitive to alcohol since I developed Lyme. I can't drink more than one beer without getting a bad reaction. That really sucks for a homebrewer!

7. How did you rise above it?

So, I've taken up other hobbies... like raising a 9 year old daughter! I've also done a lot more songwriting because I'm a musician, and I've released one CD "Obrigado" that was written mostly about overcoming the illness. The music can be found at www.thezenengines.com.

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

I think the most obvious changes that need to be made are with developing better diagnostic tools and treatment programs. Anyone who has gone through more than a year with the illness will tell you that it can be a struggle just to be diagnosed. And diagnosis is when the real journey begins. It would be great if tick-borne illnesses could be approached with the research, funding and vigor we saw for HIV/AIDS more than a decade ago.

9. Do you have any favorite holistic methods that you use to alleviate and reduce your symptoms that you’d like to share?

I do a combination of some Gerson therapies (www.gerson.org), some herbal remedies, meditation, exercise and a healthy diet. I also feel strongly that NOT focusing on your symptoms and illness and instead concentrating on more positive things in your life is a great way to break through your healing plateaus. I think it's important to always have something to look forward to everyday... and that's something I lost when I was really struggling with the illness. Now I'm happy to wake up in the morning and look forward to particular things that I'd like to do in my day.

Almost every Lyme patient I’ve ever met was confronted, at some point in their quest for diagnosis, with the “all-in-your-head” write-off. The first doctors and nurses I encountered when I got sick back in 1997 quickly moved to this condescending, all-encompassing “diagnosis” when routine lab work showed nothing awry. Instead of looking deeper, doing more specialized tests, or asking me more specific questions, these practitioners whispered, “Maybe you should see someone in counseling about these problems.”

Because these doctors and nurses couldn’t solve the problem themselves, they turned it back on me, insinuating ugly labels like “hypochondriac” and “hysterical.” I was told to learn to better manage anxiety and stress.

The problem with this type of write-off is two-fold: it invalidates the patient narrative of physical disease—which can, at times, mirror or accompany psychological illness; and it invalidates legitimate depression and anxiety as contrived conditions that do not deserve recognition or care from doctors treating physical ailments.

Depression is not a diagnosis of elimination. It is not something that doctors should land on as the solution when no other answer can be immediately found. Depression is a chemical imbalance in the brain, and proper medication can ameliorate, if not cure, symptoms for people legitimately suffering from it.

Tick-borne disease is also a legitimate illness. It is caused by the bite of an infected tick, not by a person’s presumed inability to handle stress or a propensity for moodiness. Tick-borne bacterial and parasitic infections cannot be treated with anti-depressants. Depression and anxiety are often effects of tick-borne illness, but they are not the cause.

That bears repeating. Depression and anxiety are often effects of tick-borne illness, but they are not the cause.

Anyone who is sick for a long period of time, sometimes with worsening symptoms and no end in sight, is bound to get depressed about the situation. He/she is bound to get anxious. Being sidelined from a happy, productive, active life to a debilitating existence isn’t just enough to make someone mad—it should make someone mad. People who accept this lifeless life as their fate should see someone in counseling. But never, ever should they be convinced that their situational depression and wit’s end anxiety is the root of their demise. It is merely an ugly, snarled off-shoot that, when guided appropriately, can actually fuel a patient’s will to get better.

Moreover, these patients should not be convinced that they have a major depressive disorder, a true chemical imbalance, that is causing their Lyme symptoms. Some symptoms of Lyme and depression do overlap: a certain level of fatigue, moodiness, sleep disturbances. Other symptoms of Lyme have no correlation to depression. I was never convinced that my fevers, hives, burning extremities, joint pain and muscle spasms were a result of depression, whether that depression was categorized as chemical, situational or contrived. And as it turned out, I was right. As soon as I was properly diagnosed and treated for tick-borne diseases—as soon as I started to break free of the restraints of convalescence, I started to become my old, happy self again—not because chemical depression had been cured, but because the factors causing situational depression had slipped away.

Diagnosis of both depression and tick-borne illness can be tricky. Neither have perfect tests. But doctors do have the ability to ask questions that can differentiate physical and psychological illness; they have the clinical capacity to work with patients to find out root causes of illness; and they have the training and expertise to recognize the difference between cause and effect. If this relationship is explored more carefully by both doctors and patients, people suffering from illness of any kind of can hope for easier and more accurate diagnoses, and doctors will become more accountable to validating all types of illnesses, the exterior or interior factors that may cause them, and the treatments that can help eradicate them.

Jennifer 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.

After receiving my Western Blot test results in the mail recently, I had an odd sense of relief. It was a peculiar feeling of comfort wrapped together with fear. I was relieved to have an “official” document that clearly shows that a tick-borne disease is the cause of my 50+ symptoms - some that become so debilitating there are days I cannot get out of bed or do simple tasks like going to the store. After years of being made to feel like a depressed hypochondriac by doctors, specialists and healthcare professionals, it was validating to finally see a positive result.

Several years ago I would have never thought I would be hoping and praying for a medical test to come back positive, but when you have gone years without any answers and yet you know your symptoms are real, you would give anything in the world to have a test that reveals the culprit for your pain and significantly poorer quality of life. Tests in the past had “inconclusive” results and each time I was deemed “totally fine” and prescribed anti-depressants, told to get more sleep, or--even worse--given an inaccurate diagnosis.

Along with the overwhelming relief of having an accurate diagnosis was the foreboding knowledge of how difficult this mysterious disease is to treat. Treatment is long and costly and there are no guarantees for a complete cure. A year before the Western Blot test, I had a “Dark Field Microscopy” blood analysis done that showed spirochetes (the tick-borne bacteria) in my blood and I was told I probably had Late Stage/Chronic Lyme Disease. I have done natural antibiotics, vitamin IV’s, high dose/long term antibiotics and several different protocols, but this beast is much harder to kill than I ever realized. I’ve only been learning about Chronic Lyme Disease and Tick-Borne illness for a little over a year, but it has ignited a deep sense of urgency to spread awareness and advocacy for this misunderstood and unknown epidemic.

When I discovered the political controversy surrounding the disease, my passion was further fueled. I will do whatever I can to shed light on the Tick-Borne controversy and fight against the injustice that is haunting the Lyme community. It is clear that it is only a matter of time before this disease is recognized as the deadly epidemic that it truly is. The sad part of it all is that ignorance will not make people immune to it’s devastation. That is why education is vital.

My daughter’s interpretation of spirochetes in my blood.

She told her teacher that I take
antibiotics for treatment for the disease.

These pictures came home in my daughter’s school folder and when I look at them I see a new generation of advocacy. Seeing her passionate about educating others about this disease is a great encouragement to me. I know she caught the brunt of this illness because she was at home with me during my worst days, but instead of it becoming a burden, she has--at six years old, no less--turned her experience into an opportunity to teach others about Lyme Disease. When I asked her about the pictures she said, “I was worried about you that day and wanted to tell my teacher about Lyme Disease.”

I am sorry that you are sick.

It may not be typical for a child to talk about Tick-Borne illness in kindergarten class, but I love that it shows her overwhelming empathy and love. She watched as I have been passionate about spreading awareness and education for Lyme. She has been with me to see doctors who didn't believe me, and in turn, witnessed the days when I was forced to be my own advocate. She has heard me teaching others about this disease and here she is at school being an advocate for me. If only we could all learn to be this way for our family and friends.

I learn so much from my girls. They inspire me to be a better mother, a more thoughtful friend and a more caring person. I am challenged to be more. I am challenged to continue fighting against injustice because if a child can do it, we definitely can. Spread Lyme Disease awareness and prevention in your community, educate and be an advocate for a Lyme sufferer. You may never know the ripple effect your actions might have for future generations, but I can tell you with absolute certainty that it will be worth it in the end and your efforts will not go unnoticed.

If my young child, who can’t even spell “antibiotics” can spread awareness of this devastating disease, surely our society can come together and do the same. Think of what we can do together if we have the passion of a 6 year-old...

Get Informed. Get Protected. Get Involved.

Norma Russo was born and raised in Paraguay, where she was a prominent track athlete and competed internationally throughout South America. She moved to New York 18 years ago to marry her husband Clifton, and now have two children, Maurice and Melanie.

Norma became ill 14 years ago just after the birth of her daughter, but it took doctors 12 years to diagnose her with Lyme Disease.  Her symptoms started with chronic migraine headaches that led to extreme fatigue, brain fog, memory loss, vertigo, arthritis, and unbearable pain. Through her ordeal of misdiagnoses, she had to undergo many different and unsuccessful procedures, treatments, and surgeries.

She has raised two children throughout this long process of searching for a correct diagnosis and subsequently receiving treatment.

Norma Russo is the ultimate Lyme advocate, better known as a “Lyme Warrior.” She is both a patient herself and an advocate for scores of other Lyme patients. Her ability to support and motivate patients during their toughest moments is inspiring. She has been a major voice in the New York Lyme Community. 

Norma’s major goal is to continue to unify all groups that represent patients, families and Lyme practitioners.

The Annual Tick-Borne Disease Alliance Courage Awards are a longstanding tradition that honors members of the tick-borne disease community who have demonstrated extraordinary perseverance and bravery in efforts that advance the goals of TBDA to raise awareness, support initiatives and promote advocacy to find a cure for Lyme and other tick-borne diseases worldwide. Courage Award recipients are all ages and come from near and far to accept their awards each year at the TBDA Annual Benefit. All of the TBDA Courage Award recipients are selected because they represent the best of all of us struggling with tick-borne diseases, yet determined to not let these illnesses get the best of us. They give us hope, encouragement and help us heal and gain strength.

My name is Lori Brownell and I was born on January 13, 1995. I grew up in a small town in Upstate NY. As a kid, I have always enjoyed the great outdoors, as I still do. I loved camping, biking, going to the farm or rodeos and even playing in mud puddles. My favorite music is and always will be country. I have always loved the deep meaning and morals the songs have and the style of playing and instruments used to compose each piece. I was and I still am more into music then I was with television, so I don’t really have any movie or show favorites.

Since the fourth grade, I have played the flute and have progressed to learning many instruments such as saxophone, oboe, chanter (for bagpipes), and my personal favorites, the guitar and harmonica which I am self teaching.

My whole life, I have had a deep passion for horses. They are amazing animals, each with their own unique personality that I connect so well with. It brings me joy to be around them and ride them. I’m just a country girl at heart.

During my school years, I have made many great friends and had so much fun and many great memories. My friends and family are the most important aspects of my life, and I am very thankful they were all there for me when my illness started.

August 19^th, 2011, I was at a concert and passed out. I never knew my life was about to change drastically. After that day, I never felt right again. In school, I kept passing out and soon became a liability to the school and was not able to attend anymore. In December 2011, I woke up from a nap one day, completely out of it (mostly a blur to me) and I started convulsing wildly and a strange electric feeling went up and down my spine. I was scared because I had no clue to what was going on couldn’t stop it.

About two weeks later, I had a “seizure”. I didn’t know what happened because I only remember waking up in a hospital all scuffed up. I tried to go watch my friends in a wrestling match at school, but my new illness took control. The very next day on December 15, 2011 I started to have body tics, then I had a second seizure and my tics became worse and have not stopped since then. It felt so strange to not be able to control my body, although I have now become used to that. People would try not to laugh sometimes but I said, that’s ok because I am a pretty easy going person but also VERY stubborn.

Since the beginning, it has been a challenging experience as many people were in disbelief and doctors kept saying it was conversion disorder, induced by stress. I was not stressed! I was an honor student, youth advisor of my church, youth leader against bullying at school, a star athlete and musician. I played on a travel softball team year round and one of my dreams was to play for USA Softball.

It wasn’t until January 2012 that Holly Ahern, a Microbiologist at ACC sent a letter to me and said she thought it might be lyme disease. My mom felt like I had Lyme before so she did her research and I tested positive for Lyme disease on October 16 2009 through the ELISA test, but had a negative on the Western blot (only one band showed up) out of the three when I needed to have two in order for this particular test to be positive.

Interestingly, the doctor only tested me because I had a knee injury in softball and he said the lump in my knee and fluid build up looked like I might have Lyme Disease. It wasn’t a rash, bulls eye, or a tick, just a bad injury to my knee sliding into home for the winning run. Since he said that it was negative, I went on to have my knee surgery and years to follow, I started having more joint issues and pain now as I think back. My shoulders even started to dislocate while pitching and playing Field Hockey. It was dismissed as multi shoulder instability disorder.

After we remembered I was tested a couple years earlier we went to see Dr. Rosario Trifiletti and once he saw that I have had just about every workup possible known to man and the only thing left was to do some more extensive blood work, there it was in black and white. I tested positive on the Western Blot this time according to the CDC guidelines. I also tested positive for Lyme Co-infections of Ehrlichia. Finally, we could start treatment but it hasn’t been easy.

One thing about me though, I am not a quitter, and I don’t back down. Whether I am on the field playing a National softball game or in a music competition, I will keep going and keep fighting. I have always been one to stay focused and if someone tries to bring me down, I step aside and let them pass on by. This even goes for Lyme Disease and we will win this fight, because having to fight for your life with Lyme the way we do, should never have to happen in the first place.

So for now, I continue to tutor at home, cannot drive, or even go out alone. I may have a long road ahead of me, but I am up for it and just like I did in softball, I am ready to make this another no hitter.

The Annual Tick-Borne Disease Alliance Courage Awards are a longstanding tradition that honors members of the tick-borne disease community who have demonstrated extraordinary perseverance and bravery in efforts that advance the goals of TBDA to raise awareness, support initiatives and promote advocacy to find a cure for Lyme and other tick-borne diseases worldwide. Courage Award recipients are all ages and come from near and far to accept their awards each year at the TBDA Annual Benefit. All of the TBDA Courage Award recipients are selected because they represent the best of all of us struggling with tick-borne diseases, yet determined to not let these illnesses get the best of us. They give us hope, encouragement and help us heal and gain strength.

Normalcy used to be a part of my life. Sure, I had my knees drained several times in 2003, wore a knee brace, had several MRIs, and saw a pediatric migraine specialist for my insufferable migraines which started a few months after a tick bite that was treated for a month. But this pain was so normal that I scarcely noticed it, and my doctors didn’t connect it with Lyme disease.

November 2008 changed my life forever. During swim season of my sophomore year, I started having constant nausea, making eating very difficult. I became so fatigued that it was a struggle to pull myself through the water. Over winter break, I decided to quit the varsity team so my body could recoup for rowing season in the spring, my main sport.

Then I lost my short-term memory overnight, a truly frightening experience. School tests were impossible since everything I learned disappeared after two hours. Friends constantly repeated conversations, and I endured six months of amnesia-erased memories—even of prom. I became a guinea pig to cardiologists, gastroenterologists, and neurologists as they ran countless tests. Finally, I was diagnosed with Lyme disease. After being a lab rat for so long, I had answers, but still no memory.

In July of 2009, my memory returned after IV antibiotics. I completed two year-long courses in August. Unfortunately, shortly after my drug treatment ended, I experienced encephalitis, blindness, a month-long migraine, fainting, and excruciating stabbing pains. Sleeping only 10-12 hours per week, I was a zombie for months. Acupuncture was the highlight of my week, relieving some pain. My journal read, “Sound is like a bomb exploding, and light is a sword slashing at my brain, searing me…painful, unbidden the migraine unfolds…blackness engulfs me, and no sound is tolerated . . .Nausea, like a black cloud, settles around me, and the pain takes over. Nothing to do but travel this wave, even if it pulls me under.”

In the abyss, I lost control of my life. Rowing, modeling, and robotics—my three favorite activities—were not possible. My peers talked about school, boys, and colleges. My expertise was in needles, nausea, and pain. For the longest time, I wanted to be normal again. Now I realize normalcy is overrated, but when you feel so out of place, you just want to be Clark Kent, not Superman.  

My path to stay positive became reviewing daily blessings and helping others, which brought amazing opportunities. The President of MontCoLyme asked me to run a Lyme Walk for youth to raise awareness. Since many Lyme youth couldn’t walk a mile, I envisioned a catwalk instead: the Lyme Light Fashion Show was born. I persuaded New York designers Norma Kamali and Alexandria Hilfiger to show their collections, and professional models and youth with Lyme strutted on the runway. For some of the youth, it was the first time meeting others who understood what they had been through and it was healing.

For a goal-oriented person like myself, it is quite a change to take one day at a time and put my future in God’s hands. The one thing I can still control is my attitude, so I stay positive and hopeful, and look for opportunities where my story can make a difference in someone else’s life. I am a work in progress, and though my interests are the same as before my illness, I am a completely new person. The silver linings of my life are when I hear that my story helped someone else who's been struggling. God's peace has allowed me to focus on the good. At this point, one of my symptoms has to disappear for me to go away to college in the fall―after reading or focusing my eyes for 20 minutes I get a headache, and if I press on, it turns into a migraine. The doctors think there is a good chance it will be gone before the fall, but if it is not, I will have to take a gap year. Through my Lyme journey, choosing to help others transformed my pain into purpose, and in the process, I’ve grown into a bolder person.