 Karen Gloyer is on a mission to educate children and families about Lyme disease. She's written a children's book called, Nick, the No Good, Icky Tick. To spread her message across the country, Karen needs our help. She launched and Indiegogo campaign that runs through August 20th, 2017. This book is very personal for Karen, because she has Lyme disease, and hopes to get her book to as many children as possible. With the funds from the Indiegogo campaign, Karen will donate books to hospitals, doctor's offices, and schools. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
My doctors think that I contracted Lyme disease in 1999 while living in Fairfield, Connecticut and working for the Audubon Society. I used to hike a lot and remember getting bitten and then falling ill in the fall of 1999. I was not diagnosed with Lyme, Babesia, and Bartonella until spring of 2013. I was unable to read or write by that time because the Lyme disease had crossed the blood/brain barrier. You wrote a children's book called Nick, the No Good, Icky Tick. What is the book about? Abby and her four-footed friend Chowser discover the wild, wild woods and all of its inhabitants. Along their journey, they encounter a no good, icky tick named Nick. This children's book was developed as an educational tool to teach children and parents about Lyme disease, from how the disease is transmitted by no good, icky ticks like Nick, to identifying and treating the disease. Follow along with Abby and Chowser as they explore the wild, wild woods in this playful and colorfully illustrated tale, and make sure you always do a tick check once you have been outside. You don’t want a visit from Nick, the No Good, Icky Tick! What made you want to write the book? When I lost my ability to read and write, I decided that I wanted to help others to not have to go through the same experience I went through. I had a dream about writing a children’s book, and that dream evolved into Nick, the No Good, Icky Tick. You've launched an Indigogo campaign for the book. Tell us about it: I decided to launch a social media fundraising campaign in an effort to bring Nick, the No Good, Icky Tick to more of a national level. This campaign allows people to donate to the campaign and help me donate books to hospitals, schools, and doctors’ offices. What do you wish people knew about Lyme disease? I wish that people knew that Lyme disease can be a very lonely and isolating disease. There is no cure for chronic Lyme disease, and one never knows when the disease will rear its ugly head again once you are in remission. Lyme also can affect most any part of the body, including the brain. Do you have any advice for the newly diagnosed? I would recommend that no matter what, they continue to have hope. It is not easy with this disease, but doctors are beginning to get better at helping patients, and the Lyme community is pushing harder for more insurance coverage and better treatment. I would also recommend joining a Lyme support group either online or in person. It helps normalize what you are going through and helps you feel like you are not alone. Is there a person who inspires you in the Lyme community? My Lyme doctor, Dr. Kenneth Singleton, inspires me. He was a physician who also had Lyme disease, and now his practice is dedicated to helping others with Lyme disease. He believed in me and my book so much that he wrote the Afterword in my book. He always helps me feel better physically and spiritually, Please share a mantra or quote that inspires you: Mine is actually a song, "I Will Survive" from the 1970s. "The secret to happiness is: Find something more important than you are and dedicate your life to it." - Dan Dennett
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 Ellen Hobgood turns her suffering into art. She's the owner of Ellen Hobgood Gallery in Herber Springs, Arkansas, where she paints and teaches others to paint. You can learn more about Ellen and her gallery by following her on Instagram, and Twitter. Ellen is known for her paintings of Santa Claus, which you will see later in the interview. Her business endeavors are all the more impressive once you hear her Lyme story. This is a picture of Ellen and her fellow artist and Lyme fighter, Angela Turney. Ellen hopes that sharing her struggle will help others. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis?
I keep up with it by the date of the Oklahoma City bombing. I was bitten the day before. I woke up with a low grade fever and headache. I thought had the flu. I was bitten on side road in Herber Springs, Arkansas. The road was industrial park road. I was taking a short walk on my lunch break. So the tick was on me less then a hour. I found on my left leg. It was like no other bite I have ever experienced. It felt like a set of pliers had cut into my skin. I have lived in Arkansas all my life. I hadn't ever been bitten like this before. I went to the doctor that was local. He looked at it said tick borne illness. No tests were run. I assumed all these years it was due to me not having health insurance. I had a preexisting condition of a pituitary tumor. My husband was in between jobs and I lost my healthcare. After all these years I learned that even if I had healthcare I would still have been denied. I took 1500mg of Doxycycline twice a day for 13 days. I was assured that was enough. A year to the date I was bitten every joint in my body went stiff. I was reassured that it wasn't connected to the tick bite. Dial it forward to 2010. UAMS did Elisa test on me came back negative. ANA titres were elevated. But I didn't have Lupus or MS. My nurse practitioner denied me additional test for 7 years. I didn't find this out until I pulled my medical results from the hospital in 2016. I was so frustrated to learn that I had been denied for 6 years. I had a stressful time between 2008 and 2010. I'm a gallery owner. It was rough running a business and keeping my health in check. Doctors had linked it to stress not Lyme Disease. I'd seen so many doctors by this point, 11 to be exact. Doctors making me feel like it was in my head. By now Fibromyalgia, stress fractures in both feet, scohlis in my right hip, joint replacement in my right hip, needing 3 more joint replacements, neuropathy in both feet now in my hands, sight declining along with my grip, shortness in breath, constant yeast issues, and being tired all the time. At one time I was on 9 pharmaceutical medications. I know that other folks have been on more than that. It completely affected my ability to function. I gradually over a years time weaned myself off the all the meds and switched over to holistic supplements. My weight had become a huge issue too. I got up to a whopping 295.5 pounds in 2013. I joined our local TOPS chapter in my attempt to lose weight. What was your lowest point? Exactly a year ago June 2016. I was having shortness of breath and couldn't lift my arm to paint. I convinced my nurse practitioner to send me to a neurologist at Baptist Medical. He did a full tick panel on me. After I begged him to test me. He tested me it came back Rocky Mountain Spotted Fever, R.Corrni, R.Arkri, Echrolis Chafniss, Rickistial. Two of these infections don't even exist in United States. Is there a person who inspires you in the Lyme community? Me and fellow artist Angela Turney were diagnosed same week. We had both searched for answers all these years. I found a doctor here in Arkansas he just moved here one visit was all it took. I have been going ever since last October 2016. I have eliminated now 66 pounds to date. I'm starting to feel hope again. Angela and I go every two weeks to see the doctor go over supplements and our diets. It is amazing to find someone that can help and that we have a support system in the two of us. What is the one thing that you have found most helpful in treatment? I think there are no coincidences in life. God has guided every step of the way. I'm not in remission yet, I'm just beginning my journey to get healthy and understand myself. Maybe I can help others by sharing my journey. And my art sharing is an amazing therapy. Maybe Angela and I can help others through our art. This is what artists and friends do. Thank you for letting me share my journey. "What you get by achieving your goals is not as important as what you become by achieving your goals." - Zig Ziglar During the summer I like to take things a little slower, which means curling up with a good book. The number of books I want to read is ever expanding and growing, and I've added these books to my reading list. This list is a snapshot of some of the books I can't wait to read this summer. There are so many great books related to chronic illness, or better yet, wellness, that it was hard to narrow it down to ten.  Chronic Illness Summer Reading List 2017: 1. You Are the Universe: Discovering Your Cosmic Self and Why it Matters by Deepak Chopra, MD and Menas Kafatos, PhD In the most recent offering from the alternative medicine guru, Deepak Chopra teams up with a physicist to explore our role in creating the universe. Understanding the science behind co-creation can be powerful to chronic illness patients who often feel powerless. Plus, the dark blue and gold cover is simply beautiful. 2. Life is Your Best Medicine: A Woman's Guide to Health, Healing, and Wholenss at Any Age by Tieraona Low Dog, MD This book was recommended to me by a healer, and I can't wait to dive into it. Tieraona Low Dog has a positive message about health and healing that will benefit anyone with a chronic illness. 3. No Mud, No Lotus: The Art of Transforming Suffering by Thich Nhat Hahn No mud, no lotus has been my battle cry since the beginning of my chronic illness journey. I even got a lotus tattoo to signify it, but admittedly I haven't yet read this book. The book is about how we run away from suffering, when instead we should be facing it and allowing it to transform out lives. 4. Medical Medium: Secrets Behind Chronic and Mystery Illness and How to Finally Heal by Anthony William A friend of mine, April Moor, who writes the blog Happy Healin' Vegan, talked about how this book changed her life and it has been on my "to read" list ever since. 5. Nourish, Heal, Thrive: A Comprehensive and Holistic Approach to Living with Lyme Disease by Rika Keck This book was sent to me by the author and I have been enjoying both her writing style and the incredible detail of her healing strategies. Her words are encouraging and loving, which we all need. 6. The Highly Sensitive Person: How to Thrive When the World Overwhelms You by Elaine N. Aron Many people with chronic illnesses are also highly sensitive people. This book provides some insight on how to cope when life is a little more intense for you than most. 7. Carry On, Warrior: The Power of Embracing Your Messy, Beautiful Life by Glennon Doyle Melton I just finished Love Warrior by Glennon Doyle Melton about her marriage struggles. In it she briefly opens up about her struggle with Lyme disease. All people with chronic illness are warriors and this collection of essays touches on how to keep going when life gets you down. 8. How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers by Sylvia Boorstein Buddhist principles of mindfulness have guided my healing journey, so when I saw this book I knew I had to read it. The challenge of how to live well when sick is a difficult one, and I hope this book provides some thoughtful insights on the topic. 9. The Autoimmune Wellness Handbook: A DIY Guide to Living Well with Chronic Illness by Mickey Tresscott, NFP and Angie Alt, NTC, CHC I first became acquainted with Mickey Tresscot and Angie Alt form their website about the autoimmune protocol diet. This is their most recent offering and I can't wait to dive in. 10. Anything is Possible by Elizabeth Strout I read Elizabeth Strout's Pulitzer Prize winning novel, Olive Kitteridge, and loved how it transformed me to a place and life completely different from my own. There are so many books about healing we sometimes forget to take a break from it all and get lost in a good novel. Have you read any of these books? What did you think? What's on your summer reading list? "We read to know we're not alone." - William Nicholson  Moven-May is a writer from Scotland. She was a teenager when she was diagnosed with Chronic Fatigue Syndrome, only to find out later it was actually Lyme disease. Morven-May has written a novel about Lyme based on her experience. She hopes to raise awareness of Lyme in a part of the world where it is rarely recognized and difficult to find treatment. Read on to learn all about Morven-May's fascinating story and where you can buy her book Finding Joy. Tell us a little about who you are and what you do:
I'm from the Highlands of Scotland and I am the author of the novel Finding Joy. I've been ill a long time, so I'm still learning what I can do now my health is improving. There's a lot of trial and error but the discoveries make it worthwhile. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I was a teenager when I contracted Lyme disease and had to drop out of school. I don't remember any one bite in particular, but I remember being bitten as a child. It took around four years before I was diagnosed with Lyme disease. The Doctors were adamant that I could not have Lyme disease because my blood results were negative. When the Doctors couldn't find any cause for my symptoms they decided that I must have ME/CFS. Once this diagnosis was made I was left to fend for myself—I was 18 and by this point, I was housebound and increasingly bed bound. We began hearing about people in our area who had been diagnosed with ME/CFS, and then later diagnosed with Lyme disease. My mum did a huge amount of research and found a frightening amount of correlation between my symptoms and those for Lyme disease. I was very lucky because at the time I could not have done the research needed to discover what was wrong with me. My mum managed to find a private hospital where I was diagnosed with Lyme disease and co-infections. It was quite extraordinary getting the private blood results back, which proves I have Lyme, after being told so forcefully that I couldn't have it by the hospitals. For the past six years, I have been undergoing intensive treatment and in the past year, there has been significant improvement in my health. I hope it continues but in case it doesn't, I intend to live as much as I can. You're about to publish your debut novel about Lyme disease this summer. Tell us about the writing process and about the book: I have to admit that my writing process is a bit chaotic. I seem to get my ideas at the most inconvenient times, so I tend to grab the closest thing to me and quickly write it down before I forget. I have lots of bits of paper, receipts and opened envelopes full of scribbles. Then I sit down with a big cup of tea and just write—my bits of paper often scattered around me in an unorganized mess. Since having Lyme, my concentration has been very poor but when I write the world slips away and time just disappears—I'm completely absorbed by it. What is the one thing that you have found most helpful in treatment? I think the thing I find most useful in the treatment and recovery stage has actually been protein shakes. When I was really unwell, I used to take one after having a shower because the exertion was so huge and I found it really helped with the physical exhaustion. Now I'm doing better, I take them after I've been for a walk. I've found that they really make a difference. What do you want people to know about Lyme disease? I really want people to know the truth about what living with Lyme is like. My book is, I hope, an honest account of a life with Lyme. The story is told from three different points of view because I felt, given the huge effect this illness has had on my family and friends, that their story needed to be told too. Although the book is about what it's like to live with Lyme, I hope to use it to raise awareness about Lyme disease. If you could take away one symptom, which symptom would you take away and why? That’s a really difficult one...there's sadly so many to choose from. What are you most grateful for in your healing journey? That one's easy...my family and my friends are what I am most grateful for. Writing my book has only reaffirmed to me how lucky I am to have them by my side and how truly extraordinary they are. What changes do you still feel you need to make in order to heal? I should probably drink less tea. Is there a person who inspires you in the Lyme community? Bada UK was a great charity who helped a lot of people, sadly they're no longer running. Please share a mantra or quote that inspires you: "The secret to happiness is freedom...And the secret to freedom is courage." - Thucydides You can find Morven here: Website – www.morven-may.co.uk Twitter – @Morven-May Facebook – @morvenmay "The whole of life is about another chance, and while we are alive, till the very end, there is always another chance." - Jeanette Winterson  Susan Pogorzelski is one of the most articulate writers about chronic illness I've come across. It's clear why writing is her chosen career. In this interview she elegantly puts into words the way many Lyme patients feel, but don't know how to express. Like many of us, Susan was infected with Lyme in her youth and then searched for answers for many years. Despite her long, difficult battle she remains positive and hopeful. Tell us a little about who you are and what you do:
Thanks for having me here, Kerry. To tell you a little about myself, I'm an author, editor, and creative coach for my small business, Brown Beagle Books. My latest novel, The Last Letter, was released in September and is based on my own experiences with Lyme disease. I'm also a passionate Lyme advocate and contribute regularly to The Mighty and Global Lyme Alliance blogs. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? We can trace the beginning of my health problems back to a middle school camping trip, after which I came down with what we believed was mono. After that, I was never really the same, as year after year I seemed to have a new symptom crop up and then resolve itself. One year, I had trouble breathing, which we now attribute to air hunger. Another year, I had OCD tendencies. Finally, in high school, I had severe panic attacks. Eventually, my doctors diagnosed me with Chronic Fatigue Syndrome, as fatigue was the one symptom that remained with me after all this time. Then, when I was in my late twenties, I began having severe abdominal pain. After dozens of doctor visits and tests, they removed an infected gallbladder. I thought that was the end of my health issues. For about a month, I felt great. But then I started to experience strange new symptoms, and my health declined rapidly. I developed Neurally Mediated Hypotension, migraines, neuropathy, severe neurological and psychological issues such as trouble reading and writing, balance issues, and derealization. I was in so much pain, it was difficult to walk. I was so fatigued, I couldn't lift my head from the pillow for more than minutes at a time. Unfortunately, the rest of my story is all-too familiar to Lyme patients. I saw specialist after specialist, had test after test, but there weren't any answers. Finally, in May of 2012--six months after my gallbladder surgery and fifteen years after that camping trip--I found my LLMD who would diagnose and treat me and in every way save my life. I've been in treatment for five years now, after a brief period of remission in 2014. I'm hopeful that since I reached remission once, I'll be able to reach it again. At least, that's what I'm fighting for now. In honor of Lyme Disease Awareness Month, what do you want people to know about Lyme disease? Lyme is such a lonely and isolating experience, particularly when we're first diagnosed. Not only do patients have to contend with the pain from their physical symptoms, but they're trying to survive a very real, very devastating illness that the medical community continuously denies. What makes it worse is that this disease is still so wildly misunderstood because of this denial. What I want people to be aware of is that the effects of Lyme disease go beyond the physical symptoms. It can completely change a life, which makes recovery that much more of a challenge. For those who do have Lyme, I hope they know they're not alone in these struggles, that there are people fighting for them and with them. For those who don't have Lyme, I hope they're able to understand what the Lyme experience is really like so that they can grow their compassion. What are your passions? Writing has always been my first and forever passion. What's made this illness particularly frustrating is that there have been so many times when I've wanted to write, but I've been unable to do so because of severe neurological dysfunction. However, I'm grateful that I'm able to use my writing now to raise awareness, share our stories, and help others. What was your lowest point and how did you find your way out of it? Oh, boy. My low point. I've had many, as this disease has been a near-constant roller coaster of few highs and a lot of lows. One low in particular was right around the time of my relapse. It had taken me two and a half years to reach remission, and I was so eager to be well again and have my life back, I ignored the warning signs and familiar symptoms. My psychological symptoms caused by the co-infections were in full-swing at this point. I didn't think I was going to survive treatment again, and there was a part of me that wasn't sure if I wanted to. But I sought help--first from my family, then from my friends, and then from the Lyme community, who offered me their strength when I felt like I didn't have any left. It's been two years now, and while some days are harder than others, I'm slowly getting better again. Now I cling to hope with everything I've got. What is the one thing that you have found most helpful in treatment? It took a couple of months when I was first diagnosed to find an antibiotic cocktail that would work for me, and though it took a long time, it led me into remission. With this relapse, we tried a number of different combinations, but knowing how the first worked so well for me in the beginning, I was pretty insistent with my doctors that we try it again. Luckily, they were willing to work with me, and I've been seeing steady improvements since. So I would say be willing to speak up with regard to your care--you know yourself and how your body responds better than anyone, so don't be afraid to take control of your own health. Also, Epsom salt baths for the muscle pain are lifesavers. Light exercise in the pool is also tremendously helpful because of the buoyancy. Once I figured out I could move in the pool with little pain, it was like I came alive again--just don’t overdo it. If you could take away one symptom, which symptom would you take away and why? The fatigue is and always will be my worst symptom. The pain has been excruciating, the psychological symptoms frightening, and the neurological issues frustrating, but the fatigue makes me feel like I'm living a half-life, and there are times when that becomes almost unbearable for how much I'm missing out. I've learned to accept and even live with this fatigue after two decades, but it's still the one I most often wish away. What are you most grateful for in your healing journey? The Lyme community. This community is made up of some of the kindest, bravest, and strongest souls I've ever had the privilege of meeting. While I hate that we've had to meet due to such a miserable, shared experience, I'm grateful for the friendships that have formed because they truly enrich my life. There really is nothing like finding someone who understands you, especially when it comes to this disease. Do you have any advice for the newly diagnosed? Don't give up. I know it sounds so cliché, but this journey is a long one, and so having the resolve to reach remission--which is more than possible--is prudent. I know there are times when we feel weak, wondering when that change might come, but please remember that you're so much stronger than you feel right now. Stay strong. Be brave. And when you don't feel strong or brave, reach out to this community. We'll be strong for you. What would your perfect day look like? My perfect day looks a little different now that I have Lyme. Once upon a time, I would have said my perfect day consisted of strolling along the Seine in Paris, reading books and eating French pastries. Actually, that's a pretty great dream, so I think I'll keep that one tucked in my pocket. But now my perfect day is the one I had yesterday--the sun was shining, and everything felt so fresh and new and alive because it's spring now. I had more energy than I’ve had in months, so I took my dogs for a short walk, then sat on the porch swing and listened to some music. It was perfect because for a little while, I wasn't tired or in pain, but rather at peace. Peaceful days are my new perfect day. Please share a mantra or quote that inspires you: From Sarah Williams' poem, "The Old Astronomer To His Pupil" from the book Twilight Hours, a Legacy of Verse: "Though my soul may set in darkness, it will rise in perfect light; I have loved the stars too fondly to be fearful of the night." Find Susan at the following links: Websites: www.lymebravefoundation.org / www.susanpogorzelski.com Twitter: @LymeBrave Instagram: @LymeBrave Facebook: Lyme Brave Foundation Amazon: The Last Letter: A Novel "Your purpose in life is to find your purpose and give your whole heart and soul to it." - Gautama Buddha  You know Christina as the Lady of Lyme. She writes a well-known blog in the Lyme community and is a tireless advocate for Lyme patients everywhere. That's why I asked Christina to participate in "The Lyme Interview" during Lyme Disease Awareness Month. Her story is similar to many in that she was misdiagnosed for many years before an eventual Lyme diagnosis. In spite of everything she has gone through on her Lyme journey, her positive voice shines through on her blog and in this interview. Make sure you visit Lady of Lyme and follow Christina on Twitter where she likes to hang out and interact. Tell us a little about your blog and who you are:
Hi everyone. My name is Christina Kovacs and I am the creator of the blog Lady of Lyme. I'm from Kentucky and I blog about the ups and downs of my journey healing from Lyme disease, as well as, sharing research and resources with others. I like to think of my blog and my twitter as a little community, because it's very much a give and take. I learn so much from others, and vice versa. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I live in Kentucky and prior to getting diagnosed I had absolutely no idea what Lyme disease was, nor was I aware of the danger of ticks and the need to be protected when spending time outdoors. It was 2006 and I was playing flashlight tag in a wooded area the summer before I went to college. The next day I woke up and came down with what Doctors called a "summer flu." I was sick for an entire month completely bed bound, and I remember thinking this can't be normal. I was eventually given some antibiotics that helped (not the right kind or enough for Lyme), and that seemed to get me well enough to go off to college, but I never felt the same. The fatigue lingered and body pain lingered, and more and more new symptoms began to pile on. Looking back I can definitely say that summer night in 2006 is when I contracted Lyme Disease. As with most Lyme stories I got more ill as the months and years passed while searching for answers, and for me it took 5 years to receive a diagnosis. What are your passions? Oh goodness, I feel like I have so many. I was in school at FIDM (Fashion Institute of Design and Merchandising) working on my second degree when Lyme disease finally caught up with me to a point where I could no longer function. I had to quit school just 2 credits shy of graduating and move home for treatment. Design and the world of fashion have always been a passion of mine because of the ability to create. From a very young age I would seek out local seamstresses to custom make clothing for me that I had dreamt up in my mind. I really enjoy crafting, reading mystery novels, and watching crime solving shows (I am a murder mystery fanatic) and a huge animal lover. I've volunteered at rescues in the past, and hope to do that again when I am well enough. I would love to rescue, adopt, and save every homeless dog if I could. And lastly and most importantly my greatest passion lies in God. My faith has been everything to me, and it's what has carried me though my highest and lowest moments. What was your lowest point and how did you find your way out of it? Hands down my lowest point was when I relapsed. After fighting through treatment for about 3 years and seeing glimpses of my health coming back, it all came crashing down around me. It felt like it happened in slow motion. I was desperately trying to stop it, but I couldn't. The relapse brought new symptoms, some of which were impossible to control. It also brought along depression (which prior to that I had never dealt with). It hit me hard, and that was definitely my low point. It was a long road, but I got out of it with the support of my family, with my pastor coming to my home for bible studies by my bedside, and with Doctors helping to stabilize me and give me a sense of hope that the downward spiral was slowly coming to a halt. It took baby steps, but I began to see the light at the end of the tunnel. I would say the key and saving grace was that the people around me carried my hope for me when I was out of steam. I absolutely did not know how I would recover, but I was surrounded by my family and my faith which sustained me. In honor of Lyme Disease Awareness Month, what do you want people to know about Lyme disease? That it's not named after the fruit. Haha, just kidding. I do get that question a lot and I always chuckle. But in all seriousness I would want people to know that Lyme Disease is completely preventable if you just take precautions and learn to recognize the symptoms. I wish I knew in 2006 what I knew now, and that I had even 1 person educate me about prevention and early intervention. This disease is something that can be caught early before it causes mass body wide damage, and having the facts can change the course of someone's life. What are you most grateful for in your healing journey? The people I have met. I have met some of the most incredible and kind human beings on this journey who I feel so lucky to call my friends. Their strength astounds me and their authentic friendships remind me what it's like to have people in my corner who I can always count on. What changes do you still feel you need to make in order to heal? If I had to pick one thing, I would simplify it and just say physical therapy. PT in every different format; from visual PT needed to repair brain damage, to physical PT for my body which has been primarily in bed for years on end. There is a lot of healing and re-learning to do for parts of my body which were damaged and affected by Lyme disease. Do you have a role model in the Lyme community? Who and why? Katina Makris. When I was first diagnosed in 2011 I was absolutely terrified and overwhelmed. I had made the mistake of Googling Lyme Disease and was under the impression that I may never be well again. I tried searching for others online who recovered and kept coming up empty. That's when the mother of my boyfriend gave me the book, Out of the Woods by Katina Makris. That book completely changed my life. It was the most honest, hopeful, raw journey, which took me into the depths of the hell Katina fought through. It showed the struggle, but it also showed how she came out of it on the other side stronger than ever. She recovered and wrote the book many years after she was well, so I also got to read about how much richer and fuller her life was after she survived the fight of Lyme disease. That book is what gave me hope to begin treatment, and it gave me the fuel to say, "I can do this and I refuse to back down." If Katina could survive all that she went through, then so could I. She was my first role model, and still continues to be as I see her living her best health life 10+ years post Lyme. She is a huge inspiration through and through. Please share a mantra or quote that inspires you: "But God knows the path that I will take; when he has tried me I shall come out as pure as gold." - Job 23:10 "The purpose of life, after all, is to love it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience." - Eleanor Roosevelt Most of the links on this post are informational, but a few are affiliate links to help maintain this website.  This interview is with Lauren Lovejoy, the President and Founder of the non-profit Lyme Warrior. You may have heard about one of their wonderful campaigns, such as, Kids Smile Boxes, or most recently, Ink to End Lyme. According to the Lyme Warrior website, this is their mission: Lyme Warrior is a 501(c)(3) nonprofit organization fighting to bring awareness and support to the sufferers of the silent, debilitating epidemic of Lyme Disease. Proceeds fund research, awareness campaigns, and impoverished Lyme Warriors. You can donate directly to Lyme Warrior or buy items from their online store. Lauren works tirelessly to empower other Lyme patients to raise awareness and make change. She truly lives up to the title of her organization. What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I have no idea where I got Lyme. One day I was driving on a long trip by myself and had my first anxiety attack. Within a month, I was so lightheaded I could not get out of bed and I started seeing doctor after doctor. It took me a year to get diagnosed when I ended up in an LLMD's office by accident. There I was diagnosed and started learning all about the disease that had changed my life. You are the President and Founder of Lyme Warrior. Tell us a little about the organization: Lyme Warrior was created out of my frustration at being home bound for years. After I finally got diagnosed and found that my story was common, I felt the extreme need to raise awareness so others wouldn't have to go through what I did. I reached out to others who wanted to change this disease and together we started creating products and projects we hoped would bring awareness while raising funding for Lyme research. We are now a small team of volunteers still in our first year. Our focus is to fund different types of research while raising awareness. We became an official nonprofit just a few weeks ago, but have big plans and ideas for how to make things change. Lyme Warrior created the Ink to End Lyme campaign. Can you tell us about it. What is it? Where did the idea come from? How did you become connected with tattoo artists across the country? Tattoos have been an interest of mine for a long time. I had work done by many amazing artists some of whom I became friends with over the years. I reached out to a few to see if they would be interested in donating a day of tattooing to help fund research for Lyme Disease and they of course said they would love to help. With their help, many other shops wanted to help as well. We asked each shop to do anything they wanted for a day to raise awareness. Some shops offered flash tattoos, some donated gift certificates, and some just donated to the cause. With such big names helping, it has been getting a lot of attention in the tattoo world. 
How is the campaign going so far? Do you plan to make it an annual event? Because of the success, we will definitely be having a second year. With big name artists like Kelly Doty, Timmy B, Jessie Smith, and Geary Morrill we have attracted a lot of attention in the tattoo world and hope to do even more next year. What do you want people to know about Lyme disease? I just want people to be educated about what Lyme really is--the extent to how disabling and deadly it can be, the issues with correct testing, and the adversity patients have to go through just to get a correct diagnosis. If people knew what Lyme disease was really like the funding and change would come naturally. Like so many things, it's ignorance that creates the challenge. Do you have any advice for the newly diagnosed? For those newly diagnosed, I highly recommend finding support. If that's friends that will stick around, support groups, or a more stable living situation. Find the stability that will give you strength through the journey. Do you have a role model in the Lyme community? Many. I admire anyone battling Lyme who continues to get up every day and keep trying. Please share a mantra or quote that inspires you: "Vulnerability is the birthplace of innovation, creativity and change" - Brene Brown Follow Lyme Warrior: Website: www.lymewarrior.us Twitter: @LymeWarriorUS Instagram: @lymewarriorus Facebook: lymewarriorus "When it comes to what really matters - what makes us laugh and cry, grieve and yearn, delight and rejoice - we share the same heart space. We just fill it with different things." - Oprah Winfrey Most of the links on this post are informational, but a few are affiliate links to help maintain this website.  Anastiscia Chantler-Lang is a fierce Lyme advocate. In reading her story you will see how she went to hell and back to be diagnosed and treated. She traveled the world and had many amazing experiences, until she contracted Lyme and everything changed. One of Anistiscia's biggest passions is her art, which is featured throughout the interview and can be see at Art Obsessions Gallery in Lake Tahoe, Nevada. Tell us a little about who you are and what you do: Who was I before I was diagnosed with Lyme? I was the creative, bubbly, physically fit girl—an amateur body builder, with the wide smile and big heart, who had a lot to contribute to society. I was a Mental Health Corporate Vocational Counselor with a Masters in Psychology—giving direction, training and hope to those who lost their jobs, a volunteer for youth groups with mental and physical disabilities and drug addictions—while working in government assisted day programs, a corporate English Teacher in Japan and Cambodia, with a fashion design business on the side, and a handbag designer in Rochester, New York. I dedicated time to charities like Habitat for Humanity and women's cancer programs. Now I am a Lyme disease survivor and warrior who currently teaches corporate English on the computer to South Korean students part-time, and an artist who does a variation of artwork that can be seen in Art Obsessions Gallery. I am currently studying to become a certified holistic nutritionist and certified holistic health practitioner with specialty in the lymphatic system. My goal is to help those with Lyme disease and to create awareness though my art and my future practitioner vocation. I am newly married for the first time to a loving soul I met at my Lyme treatment and I am currently have relocated from Toronto, Canada to Lake Tahoe, Nevada.  Solitude by Anastiscia Chantler-Lang What is your Lyme story? How do you think you contracted Lyme and how long did it take you to get a diagnosis? I contracted Lyme in 2008, in upstate New York, bulls-eye rash and all. I was violently ill for 2 months, thinking I had the flu and the rash like bruise was as a result of me dropping a free weight on my leg. After 2 months all the symptoms calmed down. Two weeks later I got a tetanus vaccine (there is a lot of literature on the relationship between vaccines/trauma/Lyme trigger) and 8 hours later all hell broke loose and life as I knew it, violently ended. I was mislabeled and misdiagnosed for 6 years. My life took a very different turn and a heavy hit when I contracted Lyme disease. A downward spiral of over 6 years of misdiagnosis and costly incorrect treatment. I was so violently ill. Every single symptom you could imagine humanly possible I had and relentlessly, there was no reprieve, including partial paralysis on the left side, constant vomiting, constant head and brain swelling, severe dizziness, seizures, the list was endless effecting every system and function of the body. I almost passed away on 3 occasions between 2008 and 2011. I experienced the loss of relationships, finances, ambitious, and dreams. I truly believed I was dying and going to die. Due to out of pocket medical bills my funds were depleting and no doctor could understand what was wrong with me or how to help. I lost my job, my fiancé, my home, and my only remaining relative, my mother passed away. I had been rejected twice from disability and had to hire a pro bono lawyer, as I was going to tribunal. I ended up in a car accident, which added 2 more years of an additional therapy treatment in 2011. By this time the property I owned in Canada, a condo had slipped out from under me, because I could no longer make payments. I was transient moving from friend's house to friend's house, on occasion my car. In this mess I was still so violently ill on a daily basis—in and out of emergency rooms. At complete rock bottom, by the grace of God I was "adopted" by a family whose daughter was seeing the same Naturopath as myself. A family I did not know, nor did they know me, but took me in anyway. Finally, someone at social services listened to me and could clearly see my need, and I was placed on welfare. A complete blessing and blow at the same time to myself worth and all that I had worked for. Again, another blessing came into play. I got money from the car accident, had my disability tribunal by phone due to my physical circumstances, and was granted monies. These two processes took 5 years to come to fruition. I immediately began to research and hope for treatment in the US, as unfortunately, except for a few brave Canadian doctors, Canada in general does not recognize, nor appropriately treat Lyme disease. By the time I reached a Lyme treatment clinic in Reno, Nevada in 2014, I had gone into organ failure in 2 organs, and near failure in 2 other organs. It was there, I hung on through a roller coaster journey of 5 months of intensely painful, yet lifesaving treatment. It was also there, I met my now husband, and now we fight together. Am I Lyme free? No. Am I without symptoms? No. Am I debt free? No. Am I alive and functional right now? Yes. Am I hopeful for myself and others that we are creating a voice and new treatments are progressing? YES!  Lyme Loud by Anastiscia Chantler-Lang How has your art helped you cope with Lyme disease? My art has helped me cope, because it is a passion. No matter how big or small if something is a passion you can get lost in it. It can take you away to another realm. It gives me purpose and feelings of joy instead of pain. It gives me self worth again. Every person with Lyme disease has something to give. No matter how big or how small you can make a difference. Have you ever smiled at someone or given a complement to someone who looks like they need it, as much as you do? Well what do you think you just did? Brightened someone’s day. That's what my art does for me. It helps me to brighten the moments. My hope is to brighten other people’s moments with it, as well. What was your lowest point and how did you find your way out of it? When I hit rock bottom, I had already lost my work, my lifestyle, my fiancé, my mother, and so called friends. Then, I ran out of all possible funds, was still violently sick, lost my home and was homeless, full of intense fear and barely even able to fight or fend for myself, I lost my self worth as a person. I had been stripped on every level. Physically, mentally, emotionally, spiritually. It felt like giving up. How did I find my way out? 98% wanted to die, but 2%, that small little bit of rational brain could not accept this hell would all be for nothing. One part of me could not and would not accept this as life, even though it was happening and had been for 6 years. To that one piece of me this did not make sense, since my old life had been all about productivity and meaning. There was an ounce of extremely potent will power to have this not be for nothing. I had to fight the neurological crap I was dealing with and had nothing left to lose but me, so all I could think was simply, "you are ok." I would repeat it out loud, sometimes for hours on end, "you are okay"--over and over. It was crazy stuff. For me it was refusing to give up, even though most of me wanted to and all circumstances were taunting me to. Brain trickery maybe, and internal faith, in what at the time I didn’t know, it was just there.  Guardian Angel by Anastiscia Chantler-Lang What is the one thing that you have found most helpful in treatment? Everyone responds and reacts with Lyme differently, treatment wise as well, as we all know. Nothing is cookie cutter, nothing about this disease is what orthodox medicine wants you to believe. In my case it started with the Lyme clinic. In severe and chronic cases like mine it was not a cure, but it was a lifesaver. 5 months saved my life. I also found that if there is mold and mycotoxins in the body, that can hinder or slow progress. I am currently working on that. I have my best results with UVB ozone IVs on a bi weekly basis and Argentyn 23 hydrosol silver sprayed up the nose regularly. I also take several strong Doterra oils (in a regime), and I am working with a stricter protocol on that. Of course detox as well, sauna and colema. I can't say I am a saint when it comes to a strict diet, but it's all organic. What do you want people to know about Lyme disease? It is only recently that Lyme disease has become somewhat heard of due to celebrities sharing their stories publicly. Treatment for Lyme disease is extremely complex and requires a combination of modalities over a period of 1 to 3 years or more, with lifelong maintenance protocols to regain a life back and keep it. Anyone who knows about the devastating disease knows for some people all the treatment is out of pocket and runs in anywhere from conservatively fifty thousand up to hundreds of thousands. If Lyme disease is not diagnosed early, the Lyme spirochetes will spread through the body, borrow into the organs and tissues, and create detrimental neurological problems, nervous system problems, joint and muscle deterioration, endocrine dysfunction, heart and circulation issues to name a few. It is a painful, often slow tortuous full body systems attack and a relentless symptomology hell. If left untreated it will morph into serious autoimmune diseases and even death. Due to very limited options in other countries, people from all over the world often end up in the United States for costly treatments. The disease does not chose who it wishes to attack. Everyone is up for grabs. There are many articles on the methods and growing rate of infection in the human population. An epidemic cannot keep silent. Regardless of the politics and profiteering behind this disease it has become the fastest growing infectious bacterial disease to date, and not just in the United States. Governments, politicians, the medical establishments need to stop ignoring a huge threat. Elizabeth May of the Canadian Green Party is an example of one such listener. She got the Canadian government to pass a bill on Lyme disease. It calls on the government to call a conference of provincial and territorial ministers, medical experts and representatives of patient groups to develop a comprehensive Lyme disease strategy. The strategy would include a national program to track rates of infections, and establish guidelines for preventing infections, and diagnosing and treating them when they occur. Well, it's a start. Speaking for myself, I have attempted to contact many Lyme organizations, media, and local government representatives. I can count on one hand the number of people who responded back. What happens when a Senator gets Lyme, when a President gets Lyme, when an accomplished medical doctor gets Lyme? This has already happened. So how many more souls have to get it before it matters? Who is next? Get the real facts, before it gets you. I also want people to know, those and their families who have been afflicted by Lyme, are the strongest, most determined, and most courageous individuals I have ever seen, who through this journey display exemplary character on so many levels.  Courage by Anastiscia Chantler-Lang If you could take away one symptom, which symptom would you take away and why? I think that is a very relevant question, since symptomolgy or lack of, is so much a part of the definition of the quality of life--the standard of health, comfort, and happiness experienced by a person. The things that are needed for a good quality of life, right? I know many Lyme patients have the majority of issues neurologically. I completely understand that. I was so there. When it comes to Lyme what would you take away? All of it. This is what those unaffected by Lyme need to understand the level of havoc this superbug does to the human body. In all seriousness one simply has to recall the movie Aliens. In direct answer to the question, for me it would be the constant body joint and bone pain and inflammation, because it's a matter of mobility. What are you most grateful for in your healing journey? In the beginning when Lyme came along and threw me into a violent whirlwind of trauma on all levels, and I had not the slightest idea what was happening to me, I was grateful for my mother’s very simple words "You will be OK." Because she knew me the best, I believed her words. I made my brain believe those words, because I wasn't ready for anything else as an end result. I then became grateful for the little mustard seed of will power and determination I had to overcome the relentless crap. I was so grateful for the circumstances that did keep manifesting and the timing of them, which was of a divine power or energy. For the very few people over 8 years who did not give up on me through emotional encouragement, even though they themselves didn't know what the hell was going on, including the family who took me in. For the out of the box doctors who were a part of where I am today. For the person I have become emotionally and spiritually and intellectually now. For my now husband who at my most broken time and literally near death, saw through everything and saw a person worthy of joining the fight with. For the individual people with Lyme who don't give up on this serious global situation. Do you have a role model in the Lyme community? I really don't have a specific role model. There are so many complexities with the disease itself and how it reacts with people and each person ends up in such different circumstances. A friend of mine once said, "This is a silent disease for the rich." In this political, bureaucratic present society I would tend to agree. Just having some contact with various Lyme groups I would say I have an extreme amount of respect for all those I have met and those I have not, but know they are out there and what they go through. I will be very blunt here and say, I have attempted to reach out to many Lyme organizations as well as mainstream media and have sadly gotten very little if any acknowledgment back regarding this critical pandemic (I call it that when you start to really dig into the research and numbers). One organization, Hand in Hand for Lyme Disease, Inc., a nonprofit that helps Lyme persons of all ages in crisis, is run by Laura Ann Watt-Closser. She makes a fantastic role model. Why? Because she experiences the ugliness of this disease day in and day out, but her will, determination, and strength fuel her to reach out and take steps on the frontline with people who need help and to the politicians and government and corporate sectors who could make a difference.  Bonsai Rock Sky by Anastiscia Chantler-Lang Please share a mantra or quote that inspires you: As an artist I say: "What the eyes can see, the heart can feel." A little voice inside me would always repeat: "A little mustard seed of faith goes a long way." And, "You are Ok." Never drop your mustard seed. You are worthy, so believe it. A friend recently said to me: "You must always fight, and keep fighting, and sometimes the fight never stops until the end. And therein is your worth." My mother said this to me and I stuck it in my head and it keeps me going to this day: "You will always have a million chances to give up, so why do it right now?" - Pamela Joy Perry "Everyone you will ever meet knows something you don't." - Bill Nye Most of the links on this post are informational, but a few are affiliate links to help maintain this website.  Robin Fiorese is a champion for her husband, Tony, who was finally diagnosed with Lyme disease after a misdiagnosis of ALS. In this installment of The Lyme Interview, she shares his story with the goal of spreading awareness of Lyme Disease and the many ways it imitates other illnesses. This is a family that will inspire you to never give up, traveling all the way form British Columbia to Florida for treatment. They went from hopelessness to hope. This is a picture of Tony taking a break from treatment to visit Epcot. Tell us a little about who you are and what you do:
I'm in my late 40's, I don't have human children, but I have dogs. I have been involved in a volunteer parrot rescue for the last 16 years, and have a few adopted birds. I enjoy being outside and we have recently moved from our 2.5 acres in the City of Surrey to a property 3 hours away in the city of Peachland in the sunny Okanagan, British Columbia, with a lake view. Needing to downsize to pay for treatment and for a drier climate. Tony is a 50 year old craftsman of all trades, working in the movie industry building sets, as well as, a volunteer Fireman and presently a Paramedic, he is also an outdoorsman into hunting, fishing and outdoor sports. Your husband was diagnosed with Lyme after a misdiagnosis of ALS. Please share your story: Tony was in the best shape of his life and working out 6 days a week, but while at work, one of his patients adjusted herself on the cot as she was being carried out of her residence, and Tony, along with his partner, went to stop her from falling and he ripped his right rotator cuff. He started physical therapy and was only getting weaker, losing all his muscle mass on the entire right side of his body, including his leg. He was then sent to a neurologist, and then a second neurologist, and they both said Tony had ALS, which as they said is "a death sentence." They said they had a drug they wanted Tony to take, but he refused and started to do his own research. He found that ALS and Lyme mirror each other very closely. Tony being a hunter thought it was quite possible he was bitten by a tick. We don't know when, it could've been 20 years ago. It was not until he had the trauma to his body (ripped rotator cuff) that it started to show its ugly face. Then we found a Lyme Literate Natropathic Doctor about an hour from where we lived. Tony's blood was sent off to the United States for testing. He had enough markers to diagnose Lyme disease, so the year-long treatment started. Things were getting worse but we held onto hope that at some point he would turn the corner. Once all the so-called natural remedies we tried didn't work the doctor wanted to use heavy, high doses of IV antibiotics. We left and started treatment with a Chinese Medicine clinic only 5 minutes from our home for 8-9 months, again we were holding onto hope... What was your family's lowest point and how did you find your way out of it? After realizing the Chinese remedies were also not working and feeling we were at a dead end was probably the lowest point. More research on the internet brought Tony to the current treatment in Florida where he has been for the last 5 months. What is the one thing your husband has found most helpful in treatment? Finding a doctor that knows what he is talking about and knows the proper treatment for each individual case of Lyme. What do you want people to know about Lyme disease? It can can happen to anyone. Who hasn't been bit by a mosquito? Or flea, which are also carriers. If you could take away one symptom, which symptom would you take away and why? The deterioration of the myelin sheaths on the nerves. This has taken away Tony's ability to walk and do things with his arms and fingers. He had bad breathing issues as well, but that has been Improving. Finish the following statement "I wish…": There was funding available and the government would recognize that Lyme is an epidemic and needs to be addressed. Please share a mantra or quote that inspires Everything happens for a reason. "Take your victories, whatever they may be, cherish them, use them, but don’t settle for them." - Mia Hamm Most of the links on this post are informational, but a few are affiliate links to help maintain this website.  Lori Dennis is the definition of a Mama Bear in the Lyme community. She is a fierce advocate for better treatment of Lyme patients and recognition of chronic Lyme disease by the CDC and IDSA. Her son was diagnosed with Lyme, and as a mother she fought with him for an accurate diagnosis and satisfactory treatment. As an intelligent and thoughtful person, the bureaucracy surrounding Lyme disease made her intensely angry and frustrated. She channeled her feelings into her book Lyme Madness: Rescuing My Son Down the Rabbit Hole of Chronic Lyme Disease, which is available on Amazon. Follow Lori on her Facebook page and visit her website. Enjoy the interview. I especially like what she has to say about Googling symptoms and the quote she shares. Tell us a little about who you are and what you do:
I am a Registered Psychotherapist in private practice in Toronto. Your son has Lyme disease. Tell us about his Lyme story, how do you think he contracted Lyme? I was forced to plunge myself into the world of Lyme four years ago when my adult son, who lives and works in New York City, became acutely ill. I could see for four years prior to that time, in his last semester at Brown University in Providence Rhode Island, that he was just not himself. He began to exhibit symptoms that were outsized - he lost a lot of his hair quickly at the age of 22 and he was experiencing anxiety that was not easy to explain. His light seemed dim. It was not until one week after he had a flu shot in the fall of 2012, that he fell acutely ill. Like most chronic Lyme sufferers, we don't know how or when he contracted Lyme. It could have been a tick bite at overnight camp in northern Ontario where he spent his summers from ages 12-17. Or it could have been at Brown University where Lyme is also endemic. He never saw the bullseye. He never saw the tick that apparently bit him, if in fact that is how it was actually transmitted. We just don't know. After he got a flu shot he fell ill and the symptoms just cascaded from that point on. How long did it take him to get a diagnosis? It took 18 months and 20 medical specialists in Manhattan to completely miss his diagnosis altogether--I remain outraged at this fact to this day. I obviously came to learn that most chronic Lyme sufferers have experienced the same thing, give or take a detail or two. This is honestly what has driven me to write Lyme Madness. I have been propelled by my outrage at the medical system. The lack of interest, the denial, the neglect, the invalidation that people are experiencing worldwide is unconscionable to me. At my son's lowest and most desperate place in May 2014, my intuition kicked in and I Googled Lyme (I certainly wish that my intuition had kicked in sooner). Despite what doctors have to say about Google, I feel blessed to have had this resource. It was the only way we could have figured it out as none of these hot shot specialists even had it on their radar. So, if this hurts their egos or causes them to mock us, so be it. I can live with that. Until they begin to do their job properly, we are left to be our own diagnosticians, microbiologists, immunologists, rheumatologists, neurologists, infectious disease specialists, and so on. As Kris Newby of Under Our Skin fame told me when I interviewed her, chronic Lyme is a "do it yourself" disease. Rings true. Once I knew in my heart that it was Lyme he was suffering from, I Googled (once again) "Lyme specialists" and learned for the first time that there was such a thing as a Lyme Literate MD. We were fortunate to get in to see one in NYC very quickly--on a cancellation. And so our medical odyssey with chronic Lyme disease began. I look back to that watershed moment and think about how little we understood then. How we had no idea how long and arduous this road would be. How I would be compelled to write a book on the subject. How this disease is so much more than ticks and bulls-eye rashes as the media would have us believe. As you stated, you wrote a book entitled Lyme Madness. What compelled you to write the book? Lyme Madness was derived from my sense of chronic outrage, confusion, isolation, worry and overwhelm. I was busy reading about chronic Lyme disease at every moment I could find. And the rabbit hole just got deeper and deeper, darker and darker. No one in my world understood or had the capacity to listen to everything I was learning. So I needed to find an outlet for all of this information that I was gathering and the madness of it all. Thus Lyme Madness was born. I am hoping that my book will help others be able to navigate this journey a little bit more easily, and that it will help them to feel a little bit less isolated and "crazy" by their experience which is being negated by so many. I hope that their loved ones will think twice before rolling their eyes or offering ridiculous platitudes. I hope that some doctors (including psychiatrists) will wake up and join us in this nightmare called chronic Lyme. What do you want people to know about Lyme disease? Last spring, I wrote a post on my Lyme Madness Facebook page that read: "Lyme sufferers are victimized in five different ways: by the disease itself; by doctors who turn their backs; by loved ones who roll their eyes and walk away; by insurance companies who refuse to provide coverage; and by the CDC and IDSA who say that 'chronic Lyme disease does not exist.'" This post had 104,000 views and more than 1,000 shares. What this tells us is that it hit a nerve far and wide. I’ve since been told that Lyme sufferers are also victimized by schools that require ongoing paperwork for academic accommodations - something I hadn't thought about as my son is an adult. When I read your post on your hospital stay, I realized, not for the first time, that hospitals victimize Lyme sufferers too, of course, by forcing them to explain and justify their illness at each and every emergency visit, clouding sufferers with a sense of shame, as if they are fabricating their experience. Do you have any advice for the newly diagnosed? What I want Lyme sufferers to know is that they are not alone. That there are millions suffering, and few listening. But that they can get support and validation from the other chronic Lyme sufferers all over the world. I have spoken to people in the Netherlands, in the UK, in Australia, in Japan, in Scotland, in Ireland, in Germany, across Canada, and the US. It is the very same story world-over. The medical powers that be insist that chronic Lyme disease is "difficult to catch, easy to diagnose, and easy to treat." Nothing could be further from the truth. I want Lyme sufferers to know that we are making strides. With every book, every blog, every protest, every petition, we are being heard. But it will take time to steer this ship in the right direction. In the meantime, we all have to find "workarounds"--doctors and protocols that are outside of the box of conventional medicine. I believe that chronic Lyme is now at the forefront of a paradigm shift in medicine. In time, we will continue to move far more toward homeopathic, naturopathic and energy medicine as allopathic medicine has rendered itself ineffectual for chronic Lyme sufferers. Please share a quote or mantra that inspires you: The quote that keeps me going and helps me to gather more and more courage as I move toward publishing this book is: "All truth passes through three stages. First, it is ridiculed. Second, it is violently opposed. Third, it is accepted as being self-evident." - Arthur Schopenhauer "Hope will never be silent." - Harvey Milk |
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