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Believe Me: My Battle With The Invisible
Disability of Lyme Disease
By Yolanda Hadid (Foster)
Disability of Lyme Disease
By Yolanda Hadid (Foster)
Tired of Lyme Interviews Gregg Kirk, The Founder Of The Ticked Off Foundation and Ticked Off Music Fest
"healed" from chronic Lyme disease, Gregg raises money through donations, music, and recycling to provide grants and counseling to tick-borne patients in crisis
May 4, 2017
Chris: Gregg, thank you for taking the time do this interview with me! Now, you are the founder of the Ticked Off Foundation, a non-profit organization in the United States founded in 2015. Can you give me a little background information about the Ticked Off Foundation, what its mission is, and how you go about accomplishing that mission?
Gregg: Our mission is to fill a very large gap for adult Lyme patient support across the country. Currently, there are some great organizations like the LymeLight Foundation that raises millions of dollars to help kids and young adults under the age of 25, but there is much less funding and only a few groups dedicated to helping adults. Because these adults tend to run out of money for treatment or for paying bills, they quickly lose hope. When the bottom falls out of a patient's work and they feel there is nowhere to turn, they can resort to suicide. We are attempting to make an impact on the fact that suicide is still the number one cause of death in Lyme patients in the U.S.
We formed our non-profit to help patients with free counseling, funding to pay for doctor visits and treatment, and we help patients with various treatment options if they are stuck there as well. We have also formed an alliance with a few Lyme support groups to share funds and resources to help others. In particular, we've worked with the Hand in Hand group in Massachusetts, the San Diego & Los Angeles Lyme support groups in California, and the Midcoast Lyme Disease Support & Education group in Maine.
Chris: Within the Ticked Off Foundation, there exists a program called “Recycle for Lyme”. If I’m understanding the program correctly, people’s trash eventually becomes grants used to help those with chronic Lyme disease who are in financial crisis?
Gregg: That's a good description of our program. A Lyme patient from Pennsylvania named Stephanie approached me a few years ago with an idea that came at the right time. Currently, we're noticing a lot of donor fatigue on social media. The IndieGogo and GoFundMe campaigns that used to raise thousands of dollars for patients are not doing as well because the general public is growing tired of seeing them. Stephanie had been doing a recycle-to-donations program for herself and we collaborated to take it nationwide.
In a nutshell, the Recycle for Lyme program is all about collecting non-traditional recyclables (stuff that is sent to the landfill or incinerator even if you put it in your curbside recycle bin... i.e. toothbrushes, deodorant containers, lipstick cases, etc.). Once you collect enough of it (between 5-11 lbs.), you get a free shipping label and ship it to our partner TerraCycle. They in turn send donations to us based on the amount of recyclables that we send their way. There is no outlay of cash from the participants and we're doing two great things at once... 1. Saving the planet and 2. Helping Lyme patients. Interested participants can find out more about our program here... tickedofffoundation.org/recycle-for-lyme
Chris: Aside from charitable donations and recycling as a means to generate grant money for those with chronic Lyme, in 2013 -- before the Ticked Off Foundation was even founded -- you launched the Ticked Off Music Fest, a U.S. based concert series that tours endemic Lyme areas within the U.S. Tell me more of what the Ticked Off Music Fest is all about!
Gregg: I started the music fest in 2013, shortly after getting better from a decade-long battle with the illness myself. I have a background as a musician, an event & concert organizer, and a digital marketer so I put all those things together to kick off our first event that year. Our original goal was to raise awareness and to educate the public on prevention, symptoms and treatments. We also raised some funds for local Lyme support groups and some research doctors.
But after traveling all around the country, from Florida to Hawaii, the need for patient support -- especially those in crisis -- became impossible to ignore. So I started the Ticked Off Foundation in 2015 and now the music fest raises funds for patients for our foundation. The cool thing about the fests is the musical talent is always a blend of famous musicians along with Lyme patients who are accomplished musicians as well. The stories the patient musicians tell from the stage during their performances are one of the most moving aspects of these events. And surprisingly, the audience turnout tends to be about 75% Lyme patients, many who tell me they've spent the entire 5-hour concert enjoying the music so much they forgot they were sick!
Chris: This Saturday, May 6, 2017, the Ticked Off Music Fest will be live in Woolwich, Maine. What special events will this music fest have, who will be playing, and where can people purchase tickets to attend?
Gregg: Our event on May 6 in Maine is a collaboration with Midcoast Lyme Disease Support & Education (MLDSE), Ridin’ Steel and Taste of Maine and Ticked Off Music Fest. The event is called Midcoast Lyme Aide and it is a combination motorcycle ride and benefit concert. The night will also be a tribute to the memory of Bill Chinnock, one of the original members of Bruce Springsteen's E Street Band, who succumbed to Lyme disease in 2007. The best place to purchase tickets is at mldse.org. Doors open at 4:30 p.m. and tickets are $25 in advance and $30 at door. VIP packages are available for $50 per person.
"The point is, there is always something better for you
on the other side of despair." - Gregg Kirk
Chris: Suicide has unfortunately become a grim reality -- but never should have -- for many who have struggled with chronic Lyme and the families of those who are no longer here. Why is suicide such a big problem in the Lyme community and what does the Ticked Off Foundation do to help fight suicide in the Lyme community?
Gregg: As I mentioned earlier, it's all too common for Lyme patients to run out of funding for treatment... or to even keep a roof over their heads all while also fighting the illness. Insurance companies don't cover alternative treatments and they are covering less and less of pharmaceutical treatments. This can be overwhelming, coupled with the fact that many patients with neuroborreliosis (or Lyme infection of the brain) can develop depression and anxiety on top of this. It's a lot to deal with, and unfortunately patients can feel that their only way out is suicide when their quality of life gets so bad. We've stepped into the breach to offer free counseling, funding to help with bills and treatment, and we talk to patients who feel stuck in their current protocols. We let these people know that they are not alone and they do have support.
Chris: If someone who has chronic Lyme disease is feeling suicidal, what should they do to get help and what would you personally say to that person if you had the chance to be in their presence for a moment?
Gregg: If a person is really going from contemplation to acting on suicidal thoughts, I recommend they contact their local suicide hotline. For those who feel hopeless and want to get rid of these thoughts, we can help talk them through it and let them understand that we've been in their shoes and have experienced the same things. We've been fortunate to make it to the other side and can offer tips based on our own experiences. We're not offering medical advice... just relating information of what we've experienced that they might find helpful.
Chris: If you don’t mind, I’d like to get a little personal now and talk about your own struggle with chronic Lyme disease. Where did it all start for you and what are some of the challenges you’ve personally faced along the way with the condition?
Gregg: I moved from the Philly area to Connecticut in 1999 and within two years I started noticing strange symptoms after eating meals. Eating made me feel spacey and very sleepy to the point of having to take a short nap after meals. Even by Lyme standards, I wouldn't categorize those symptoms as "classic," so consequently I went two years undiagnosed. Keep in mind, I was living in the state that gave the illness its name, yet none of my doctors thought to test me for it.
In 2005, a holistic doctor finally diagnosed me based on my medical history and I began taking antibiotic treatment for the next eight years. This treatment ranged from PICC lines, intramuscular bicillin injections, to multiple oral antibiotics at a time. The antibiotics actually made me feel worse and almost killed me on three occasions. It wasn't until I went off of them and started herbal treatments that I noticed some improvement.
Chris: You’ve declared yourself “finally healed in March of 2011”. By “healed”, would you say that you’re completely symptom free? Would you care to elaborate by what particular means or combination of efforts you were able to accomplish this?
Gregg: What put me into total health was a trip I made to Abadiania, Brazil to see the healer John of God in 2011. During my visit I experienced a physical, emotional, and spiritual healing that actually affected my physical appearance and made me appear to have age-regressed 10 years. John of God never actually laid a hand on me and I experienced a form of high-energy healing while meditating with others in a group. The results of this visit literally changed the course of my life, and I now bring people to see John of God who have also been suffering from Lyme disease. It also inspired me to create the Ticked Off Music Fest and begin to help other Lyme patients.
Chris: The Ticked Off Foundation is already doing some incredible, altruistic, and humane work in an effort to lessen the burden of chronic Lyme disease on many individuals. Do you have any plans for the future to expand upon this highly commendable, philanthropic effort by your organization?
Gregg: We are always looking for new opportunities, and I think the best way we can expand is to get more donations to help us grow as a group with the intent of helping others.
Chris: As someone who has “healed” from chronic Lyme disease, are there any words of wisdom or advice you can offer to those who are still battling Lyme disease that feel all hope or chance of a recovery is gone?
Gregg: I can offer some words of hope. I was at a stage in the illness where my future looked so bleak, it actually seemed better for me to leave the Earth than to continue experiencing the debilitating pain and suffering I was going through. I've never been suicidal, but thoughts of my life's end didn't bring me any fear.
Not long after feeling that utter low point, I began to experience some relief, and I began to focus on the things in my life I enjoyed instead of being so consumed with the disease. Help came to me, and things began to get better until I ultimately experienced complete remission. The point is, there is always something better for you on the other side of despair. It is understandable to feel you've lost all hope. But there is always someone waiting to help you. There is always something better about to happen for you.
Chris: Gregg, I sincerely thank you for giving me the opportunity to ask you some questions about you and your organization. I think what your organization does is deserving praise beyond what words can convey. Keep doing what you do and I wish you a lot of fun at the Ticked Off Music Fest this Saturday.
Gregg: Thanks so much and I appreciate your kind words. Good luck to you and your readers and please feel free to visit us at tickedofffoundation.org, tickedoffmusicfest.com, or the Lyme information website we've created with other Lyme patients at lymeknowledge.com.