Life in Lyme Light Posts

How has Lyme Disease affected your life?

I was a wild thing – backpacking through Europe and Africa, drinking, sleeping in train stations and generally not giving a rats a$$. I came home with Lyme but didn’t know it. All I know was something was very wrong – a few somethings were wrong with my body. I tested negative for Lyme initially and carried on seeing a mary-go-round of specialists for 3 years. It was rough. I couldn’t walk for a few days at my worst. How did Lyme affect my life? Well, my days of traveling the world came to a gloomy end, but I found this insane passion for medical research. It began with Lyme and ventured off into physiology, anatomy, nutrition, genetics, immunity, etc. I love research and one of my favorite pastimes – no joke – is shopping for used medical text books. Lyme ultimately affected me in a bittersweet way. I didn’t get the life I thought I’d have, but I became more compassionate and started living my life not just for me but for everyone in this boat with me. I am happy – not that I got Lyme – but that I experienced hardships in my life that have put me on the next level of spirituality than I previously had reached. My travels were about soul-searching, afterall, so Lyme has been quite the journey.

What inspires you?

Strength. When I see others and myself genuinely and confidently share that they are feeling great because of x, y, or z, it motivates me. When I feel grrrreat, physically, I keep rolling with it, exercising, hanging out with the world and loving life. Being strong and healthy is the easiest and most effective way to stay in remission. I don’t like losing momentum. I don’t take any day off from good health, from my blog ItsNotJustLyme.com, or from remembering to be grateful. I don’t like losing momentum.

“The more grateful you are, the more goodies you get.” – Louise Hay

How has Lyme Disease affected your life?

My Lyme disease journey began over 39 years ago at the age of 8, but I spent the next 27 years of my life fighting for an accurate diagnosis.

In the summer of 1977 a bite appeared on my leg, surrounded by a red rash (not a bulls-eye rash), followed by a severe case of the flu: 105 degree fever, delirium, debilitating fatigue, extreme bone and muscle pain, excruciating headache, nausea – all the tale tell signs of Lyme disease. There was no testing, accurate or otherwise, for Lyme disease in the Midwest, where I grew up as a child. Treated for a spider bite with a short round of antibiotics, and after a short hospital stay I was sent on my merry way. My parents and I assumed everything was going to be OK, because the doctor told me I’d be fine. This could not have been further from the true reality of what was in store for me and my long and winding health journey.

Throughout my remaining school years, my 20’s, and into my early 30’s, I battled a multitude of chronic illnesses. Collecting a trail of countless specialists, diagnostic testing, misdiagnosis after misdiagnosis, ER visits and hospital stays spanning all across this country.

Despite my sickliness, I fought fiercely to be strong, fit, and an active athlete. I also worked hard to achieve a successful career, beginning in public accounting and then making my way into the profession of healthcare administration. But over the years, as my work life and stress accelerated, my body became more and more weary. The constant bouts of the flu and unexplained viruses began to take over.

In January of 2001, I was struck down by a severe case of the flu once again. A significant health relapse leaving me bedridden, weighing less than 85lbs, and fearing death. I was forced to resign the position I had worked purposefully to achieve and valued greatly. The independent, strong-willed, I am woman hear me roar, fierce and feisty woman had faded. I was withering away and completely dependent upon my husband and others for every aspect of my life. No longer able to even manage the simplest of tasks.

Specialist and hospital after specialist and hospital continued. I was finally diagnosed with Lyme disease in 2002, and later with Babesia, Bartonella, Mycoplasma, MTHFR gene mutation, and a myriad of other chronic conditions. The decades of misdiagnoses only exacerbated the severity of my illness, allowing these diseases to invade and completely break down my once strong and healthy body.

If only I had been properly diagnosed and treated when my original tick bite occurred in 1977, or anytime prior to my Lyme relapse in 2001. Perhaps my health journey would have been completely different. Perhaps I would still be the independent, athletic, active, fire ball of a woman I used to be.

My life has changed tremendously, especially over these past 17 years, due to my battle with Lyme disease, co-infections, and the multitude of chronic illnesses that have consumed my body. And while I am still battling and fighting fiercely – every day – to find wellness once again, I hope and pray to learn from this trying and challenging journey. I remain optimistic and lean on my faith, my adoring and caring husband, my family, and my friends, as I continue this fight.

My hope and prayers are for others, especially children, to be spared years – decades – of constant pain and suffering, to be spared a lifetime of chronic illness and all of the debilitating and life altering challenges that can follow.

There is a need, a hope, and desperation for prayers to be answered. Change is needed. Accurate testing is needed. Improved treatment options are needed. Advanced research is needed. Healthcare coverage is needed. Better understanding and treatment for all tick-borne diseases is needed. The voices of the suffering need to be heard.

With constant effort and emphasis toward awareness, someday, change WILL happen.

Thank you to all who advocate and work tirelessly behind the scenes on behalf of the Lyme community. With constant effort and emphasis toward awareness, much needed change will happen.

What inspires you?

I am in awe of all nature has to offer. I am a wannabe photographer.

I love capturing beautiful sunrises – representing a new day – a new beginning.

“If you must look back, do so forgivingly.
If you must look forward, do so prayerfully.
However, the wisest thing you can do is be present in the present… gratefully.”  ~Maya Angelou

Terry’s blog with an updated story; click here. (formally ColorMeLyme)

RIP Terry Mayfield, you’ve always encouraged me since the beginning of this project and I will miss you. -Lauren

How has Lyme Disease affected your life? What inspires you?

Transcribed from video entry, click here to view. My name is Bonnie and through the grace of God I met this woman, Karen and thank God she’s helping me out. Anyway, I am a property manager, and/or I should say I was a property manager for eight years. In January of 2015 I began to have pain in my shoulder and my neck. I went to a pain management doctor who gave me a shot, who gave me a shot in my shoulder, but the pain didn’t go away.

I have to read this because I can’t remember what to say, that’s how bad I have Lyme Disease. Next I went to a chiropractor who after three weeks, said he couldn’t touch my nerves, they were too sensitive. Then I tried a physical therapist, I went eleven times. He said the swelling was too much, and he saw swelling in my elbows and told me to get checked for Lupus. My pain management then sent me for MRIs of my neck and my back and he gave me pain meds. And he sent me to a neurologist, since then I have seen five different neurologists. And rheumatologist and whatever, but I’ve been on five different pain medications. Right now I’m on Nucynta, the immediate release and the extended release. Which my pain goes right through that. I can’t be on Oxycontin or any of that because it makes me itch too much. I scratch up my whole entire body.

Finally I saw an infectious disease doctor, that thank God he was Lyme literate. He tested me for Lyme disease and sixteen weeks later, I’m still on the Rocephin drip and of course the Nucynta, for pain.

I can’t sleep at night because the pain is too severe. The pain goes from my neck, all the way down my neck, up to behind my ear, to the front of my head. Pains in my elbows, pains in my ribs and my knees and my feet. It’s in my left eye, it’s in my fingers, my wrists. I have pain in my shoulders, I can’t remember what I did five minutes ago. So I don’t know whether this Rocephin will.. well Rocephin is helping because I’m not in a brain fog anymore.

My husband was so afraid that one day I would wake up and not know who he was. Anyway, I want to say thank you Karen, from the bottom of my heart, and I believe in God. I met you Karen and you changed my life. And I met all these people on Facebook, that changed my life. So, thank you Karen, and thank you to all the people on Facebook that I haven’t met and call my friends. God bless you all, bye now.

How has Lyme Disease affected your life? What inspires you?

Last summer I worked and travelled in America and half way through I got very sick. I tried to brush it aside, telling myself it was a combination of hangovers, late nights and early mornings, days spent running around after little kids. Anyone would be tired and achy right? Except after a month of working I couldn’t run after the kids anymore, I’d fall asleep with my sunglasses on during swim time, it felt like every conversation was happening through a glass window, in slow motion, it didn’t feel like my skin or my body belonged to me. Deep down I knew something was wrong but I kept pushing through.

One day after work I went on a bike ride. I collapsed and hyperventilated on the side of the road. It made no sense?! I use to go to the gym for a couple hours every day. After the job ended, I travelled with people I’d met there, but I felt like a grandma. My back was in agony, alcohol made me feel terrible (more than usual terrible) and I could barely walk a couple miles without feeling like I needed to vomit and collapse. I wanted to say yes to everything they did but my body was telling me not to.

I had a few days where I just couldn’t move and didn’t know why. When I eventually got back to England and still felt awful, I told myself it was jet lag… yeah the jet lag that still hasn’t ended. Well, the test for Lyme Disease came back positive and here we are. After a month of IV treatment for Lyme I’ve been told I have post-viral ME/CFS. A friend said to me, “but it looked like you had the summer of a life time.” Yeah I met amazing people and I got to live in and travel America, but the majority of my time was spent agonizing over what was wrong with me, thousands of miles away from home. Smiling photos don’t show the half of it • I am what a person with an invisible illness looks like •

How has Lyme Disease affected your life? What inspires you?

My name is Chloe and I am 14 years old. I have had Severe Chronic Neurological Lyme Disease, along with Ehrlich, Bart, and Babesia for 3 years now. I never got a rash and it started out by severe strep throat like symptoms when I was 11. Bad fatigue, sore throat, headaches, and a high fever of 103 for over a month without the fever breaking. It was the beginning of December when this started and by Christmas I got a level 10 headache and basically as my mom and doctors put it, I was shutting down.

A couple days after that I went almost completely blind. So they sent me to our local hospital where I stayed for 1 week, during this time they tested me for a lot of things and everything was coming back normal. My fever had broken but I still had a level 10 headache, despite the heavy pain killers, and was still almost completely blind. From there they rushed me to Washington DC where they ran every test known to man and everything was coming back okay, they gave me varied tests like spinal taps. At this point I was pretty much a vegetable and have very few memories from this time, but I remember a doctor telling me I was faking and that it was in my head and I needed to get over it. They discharged me and at this point I was still blind and temporarily paralyzed and couldn’t feed myself. But my parents didn’t give up they had heard of Lyme disease since we live on the Eastern Shore of Maryland and we drove several hours away to a LLMD who sent my blood to IGNEX.

While waiting for the blood test to come back I got worse and they had to send me to a Hospital in Florida. Where I spent a week which included painful tests. At the end of my stay I remember the doctor and a Social worker coming and telling my Parents that they needed to speak in private, during which they told my parents that I was faking and that they needed to control me and it was my head. At the end of the conversation he said and also your LLMD called, you tested positive for Rocky Mountain Spotted Fever. My parents just smiled and walked out.

I immediately started treatment and my vision came back and my headache got better. The next winter I was back in the hospital, but it wasn’t as bad. But after that I was only having a couple bad days a month, I mean everyday is a struggle but getting to where you can function is a blessing. Last year was pretty good. This year has been rough I haven’t been in school for 2 months and am starting to get tics which is terrifying. Lyme has now damaged my liver, heart, and thyroid.

I have to say the scariest thing is being blind and paralyzed, fearing that you would be like this for the rest of your life. However, I am starting to feel better and I am going back to school Monday . So YAYYAYYAYAYAY! I would have to say my future inspires me, along with my family and Lyme Friends. It is hard to see a future with Lyme Disease, but I refuse to give up my mind and that is what pushes me.

How has Lyme Disease affected your life?

I am 21 years old, and I have been dealing with Lyme for 7 years. Lyme has taken and made my life full of sad feelings and the belief that I was never good enough. I have missed so many things, and let’s not forget the horrible symptoms and pain. I thought that I was lazy and stupid.. Not did I know that I had Lyme. 1 1/5 years ago I got my diagnosis, the happiest and the worst day in my life.

What inspires you?

Much of my inspiration comes from the nature. It is beautiful here in Norway. But I also find inspiration in music and my absolutely amazing boyfriend.

Stand your ground and fight.

How has Lyme Disease affected your life?

I contracted lyme from a tick in Chester County,  PA in 2001. I went misdiagnosed for 9 yrs. It took till 2010 to convince someone to do the bloodwork. And it obviously came back positive.

I’ve taken a lifetime worth of oral antibiotics for 5+ years and had 3 separate picc lines for iv antibiotic treatments. Also there’s the numerous psych and anxiety meds, nerve meds, pain meds, vitamins and natural herbs, foods not to eat and limited foods you can eat. You feel like you’re dying. Herxing is the worst! Epson salt baths, monthly Dr appointments or daily if you have a picc line for 30-60 days not counting weekends, missing out on important occasions like holidays, weddings, births, deaths etc. Then you have the headaches, light sensitivity, pain, random joints hurting, swelling like you couldn’t imagine, depression and anxiety pushing down on top of you every second of every day. This doesn’t include a full list of symptoms. It’s enough to drive you mad or wanting to kill yourself. I’ve been in the psych ward 5 times. Countless ER visits, years of meds that did nothing because my primary Dr couldn’t figure it out and sent me to an infectious disease Dr who didn’t believe in Lyme even though he was holding my positive test results in his hands!

I went from working full time job at a very well paying job, snowboarding and always active to being bed ridden. My late boyfriend went missing for 4 months after he DIED from a seizure caused by Lyme only to be found yards from the house. He suffered for over 15 years, had 13 picc lines, was having grand mal seizures weekly and in his final 2 months he would have several daily.

We need our government and insurance companies to get more involved before this turns into a larger worldwide epidemic. It’s already found throughout the world but if left untreated or left the way things are now for Lyme patients, the entire human race is at risk.

What inspires you?

Nature & Art…I haven’t been able to do either for many years now because of Lyme.

Never Give Up!

How has Lyme Disease affected your life? What inspires you?

It is no secret that I’ve been battling chronic Lyme disease for two years now and although I find it entirely unnecessary to complain, it is extremely important for the cdc to acknowledge this growing epidemic.

In seventh grade it started with joint pain which progressed into fatigue and stomach issues. By freshman year, I could barely make it through the school day. My memory was terrible and it was difficult to read and focus. I had had three Lyme disease blood tests by this point, all coming back negative. My disease had progressed to point where I had to leave school, I could barely read and needed help up the stairs.

Finally I got a positive lyme test. Little did I know the suffering that lay ahead. I was diagnosed with three other pathogens, all from that one tiny tick. Since then everyday has been a struggle and completely unpredictable.

If I could somehow turn back time and take my disease back and all of its unimaginable pain, I wouldn’t. This disease has changed who I am and who I will become. To take it back would mean I’d lose my strength, compassion and wisdom. Every second you are alive you have a choose, are you going to be positive or are you going to be negative. I choose to be positive everyday I am breathing. I refuse to be a victim and I will never stop fighting. I am warrior and I battle my enemy every day all day. I will beat this awful disease and when I do you can all buy my book.

How has Lyme Disease affected your life? What inspires you?

Lyme Disease feels like living with a Magic 8 Ball.  You really never know what you are going to wake up with in the morning. Sometimes you get lucky and it tells you to try again tomorrow and you have a really great day.

Sometimes you get the iffy answer that you are just going to have to get dressed and find out what will happen, and other days you know as soon as you open your eyes that the answer is that you are screwed.

I really try not to focus on it too much. There are times, seasons actually, that the issues aren’t that bad. I’ll get an odd inflammation spot and it’ll hurt, but really pain is part of the day-to-day. So you learn how to stop using that arm for a day, walk without putting much pressure on that leg, or just deal with it and wait it out. I don’t do well with medications of any kind, even homeopathic. Sometimes just heat or a bath helps get through a day when it is particularly painful.

There are so many people living with Lyme disease searching like I have for answers and hope. There are some ways to help symptoms, but still there are few rays of hope. I give to the Lyme researchers, hoping that one of them will come up with something useful.

To be honest, Lyme is a nightmare. I rarely admit that. But it is so frightening that sometimes in the midst of the harder times, you just worry that you are going to live in misery for the rest of your life, and you wonder how long that will be. You look at your children, afraid they might have it, then feel like a terrible mother because you know that your health is letting them down. Sometimes I am so angry with how I feel that my husband thinks I don’t care about him the same way, it’s not him.. it’s the Lyme. Depression is a hard symptom to fight, it feeds on your fear. “What if my heart is the next thing to stop working right?” It makes you so exhausted that you lack motivation to do better. “I don’t want to get on the treadmill, it hurts me and I am so tired I would rather just curl up on the couch.” Your lack of movement isn’t helping your self-esteem or your body, it just makes it heavier and weaker.

People ask me from time to time to talk to a friend or family member about living with Lyme. I always freeze up. I hear myself saying that I will, but deep down I am shaking at the idea that someone else out there is going through the crap I am going through and if I have to stand there and pinpoint what Lyme really feels like and tell them that they are not going to see the end of it any time soon, I might cry.

I wish I had better answers. I try to give hope when I do talk to other people about the disease that is taking down people every day. Men, women, and children are getting infected with a serious disease and until recently nobody was aware. Treated early and hard in the beginning, Lyme disease is treatable and your odds of a complete recovery are really good. But left undiagnosed like so many of us were, it becomes a world of pain and curious symptoms that I often find overwhelming.

Searching for answers sometimes helps. I’ve found some wonderful websites and I share them with those who are looking. And sometimes just learning how to forget about it for a while and focus on the good places in your life is the best treatment you’ll get. It’s just how the ball rolls.

Good luck!

I am a firefly!!! When my days are dark, I look out and see there are others like me doing this dance to their own song and lighting up the night. That is why my blog is called FireflyDance. Read more of this warrior’s story here.

How has Lyme Disease affected your life?

In some ways life is better. All four of us have Lyme. We are a lot closer now than before we were diagnosed. My kids have opened up more about themselves. We all seem more ready to stand up to people. On the other hand, we don’t go up north anymore, we are sure we contracted Lyme from spending time up north.

What inspires you?

I’m inspired everyday by how strong my kids are. They have been through hell and still try hard at school everyday. My husband also inspires me. He never complains and also always has a hug for me. All while working full time and trying to help his dad also. Don’t get me wrong sometimes Lyme is a real bitch, but our family will make it!

One of my favorite quotes is by Bob Marley, “You never know how strong you are, until being strong is your only choice.”