© Image by Life in Lyme Light.

How has Lyme Disease affected your life?
I am not a Lyme disease sufferer but I am a Lyme disease advocate. I admit to having very limited knowledge or experienxe and I look to my friend who suffers from Chronic Lyme to decipher through all the information and educate me. Many suffering from Lyme know their own bodies and are more experts on this than some “experts” in the medical community claim to be. My friend Nicola Lavin has chronic Lyme disease. We lost touch but I didn’t need to be close to her to empathize with her situation. When I asked to help, I uncovered more about her story and it made it even more important to stand up for her. Her husband and son are two angels and care for her so deeply. She always thanks me for getting involved but she is the one that has inspired and helped me the most. Despite being crippled with this, she keeps on fighting so she can have a normal life with her family. All I will say is, no one wants to be in the situation she is in. Show empathy and show your support. I can’t imagine living with chronic Lyme disease, fundraising to get treatment, being turned away by a lot of people in the medical industry who don’t believe in all the “hype” about it.

What inspires you?
Nicola Lavin is my inspiration. She is crippled with this illness and is off her antibiotics right now to prepare for treatment. She doesn’t fight for just herself. She fights to give her husband and son back a normal life where they don’t have to be her carers. Even though she has been told at points in her life that it is all in her head, she keeps battling through.

Nicola got into art because her Mom loved it and to keep food on the table because she lost her high paying job when symptoms got unbearable. Her Mom’s favorite flower was a Lilac rose and she named her art business Rosalilla which means Lilac rose. So I see the butterfly covered in Lilac roses because I am sure her late Mom is taking care of her from heaven too.

© Image by Life in Lyme Light.

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

I am only writing this because I WISH that someone on my instagram or in my life did and I could have saved myself months of torture. I have Lyme disease. You might need to look that up but here’s why you need to know.

Lyme disease is becoming increasingly common and it’s HARD to diagnose. I have known something was wrong for a long time, I have had problems in just about every part of my body and as the years have gone on the extreme fatigue has gotten worse and worse. It went from having frequent naps that I chalked up to a bad diet and a lot of booze in University to not being able to function or walk for more than 5 minutes or even have a halfway functional conversation. Along with unimaginable Fatigue I have extreme brain fog, joint pain, headaches and other lovely symptoms that’s you can also google.

Lyme disease can have over 80 different symptoms and everyone is different. It has honestly ruined my life as I knew it and if I didn’t have such an amazing support system I don’t know where i would be. The thing is, I was diagnosed with so many things before lyme and doctors brushed me off saying that I was depressed or I needed psych help. I persisted, I kept looking for answers because I refused to accept that I could possibly be THAT sick for no reason.

I actually had to get tested in the states because Canada does not have the advanced testing to catch late stage lyme disease (nor do they treat it) I did not have a rash, I didn’t even know that ticks could cause me so much harm until a few months ago. The point of this post is that I want people to know and be informed about this brutal, debilitating disease because I didn’t and just a little bit of information could have saved me the hell that my family and I have been through.

It’s becoming more common and no one ever talks about it. It’s an invisible illness that takes everything away from you and a little awareness would be amazing. I just hope that someone who reads this may be able to help someone who is also sick or will make sure they check themselves and their friends for ticks next time they are in the forest and bullseye rashes. If you catch a tick on your skin go to the hospital.

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

IT IS TIME FOR LYME DISEASE WARRIORS TO STEP OUT OF THE SHADOWS AND INTO THE LIGHT!!!

I am very proud to share not only a true friend But also a Sister Lyme Warrior
Sandy Pappas Segall Loves life and has a message to share with the WORLD… This my friends is one out of hundreds of thousands of Lyme Warriors  She is a true blessing to all who know her!!! She is Strong, Passionate and Resilient. No she does not always look sick…
Although she suffers with Chronic Lyme disease everyday…

THIS IS Sandy Pappas Segall’s message:

Hello my name is Sandy Pappas Segall. I am 54 yrs young and I live in Maryland. I’ve lost my ability to do what I am passionate about. Equestrian sports… I loved being a jumper and fox hunter! My LLMD (Lyme literate MD) thinks I’ve had Lyme disease since child-hood. Every time I’ve been sick, I can link it to Lyme. Really hit me hard six years ago. I was misdiagnosed with R. A., depression, and also PTSD. I can’t say that I lost my passion…. I will ride again!!! Through this journey I’ve learned that over all people are good. We all have different ways of dealing with our troubles. There is no wrong or right right way as long as you do something! I also would like the world to know…” My husband Jeffery is My Love and My Everything
My mantra is.. ” If I died tomorrow… I’ve Lived

PLEASE SHARE

Posted by Debra Nugnet, story by Sandy Pappas Segall

© Illustration by Life in Lyme Light.

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

Lyme disease made me realize to never take anything for granted, it taught me to value my health and how important it really is. I’ve truly become a whole new person, I miss the old me terribly. I’ve went from an active 26 yo living & loving life freely to a person who feels like they’re dying in pain scared to death living in the dark. I’ve had this disease bartonella included for many of years without knowing which scared me even more upon being diagnosed, everyday through my treatments I pray to the Lord for healing, faith, and hope. One good thing lyme&Co’s gave me is my soulmate John, he battles as much as I do with such strength. Thank you Facebook support page “Beating Bartonella” for such a wonderful man. Thank you lifeinlymelight to allow me to share this right now, spreading awareness is so crucial for many, and I hope for a cure and a speedy recovery for all that suffer, and also peace for all of the lives lost to this horrible illness. God bless. XOXO

“This to shall pass.”

Lyme ribbons to represent all who suffer, all who we lost, and all for those that need help.

© Graphic by Life in Lyme Light.

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

I’m tired, pale, hurting, and still trying to smile. At this point, not even death scares me. There isn’t anything that scares me anymore. I’ve been through it all. What terrifies me even more is the fact that I don’t know if I’ll be able to be treated this time around. I may be denied for treatment, and I definitely do not have 15k laying around. Last time the totals paid were closer to a Million for only 2 years of treatment. And Insurance doesn’t cover it all my friends. Tell me again how you got bit but you think you’ll be ok without going to the Doctor. Tell me again when you have near death experiences and doctors still won’t believe you. My Dr., who is currently partnering with the U.S. Federal Legislation for new Lyme regulations, and has been in practice for over 25 years, who has seen patients all over the world, once told me I was one of THE WORST cases he’s ever seen, and lived to tell. So tell me everything. But don’t tell me this isn’t real.

Chronic Lyme is a very traumatic illness. It’s a death to your life filled with health, careers, loved ones, finances, and hobbies. Lyme Disease brought out other illnesses in me that I never had before. It damaged my nervous/cardiac system. It left me with fear inside. Discussing it is like reliving a nightmare, but I do it to help others. I am so adamant that you need to check yourself for ticks everyday & be aware of the early symptoms, because you don’t always see a bite. If you suspect Lyme, find a way to get treatment immediately. At least 1-3 months of antibiotics to be sure. It may be 100$ or so now, but if you wait a matter of months it can easily turn into $100,000, permanent damage to your health, and a fight for your life.

We met on Instagram under the hashtag #lymedisease. Never did I think I’d meet you. A year ago you drove 8 hours total in 1 day to see me. A year later, we are eating dinner together in our place while Calvin plays in the background. Being in a relationship with Chronic Illnesses is not easy. There’s empathy, but also trials. From Lyme disease, tumors, blood clots, and hospitalizations. To spontaneous vacations, endless smiles and more often, watching crime shows while ice packing our heads with migraines, laughing at each other thinking-what on earth is wrong with our bodies..? If someone wants to be in your life, they will make it happen ❤️ Everyday is unpredictable for us; but we support each other. Nothing is impossible when we are together.

© Image by Life in Lyme Light.

How has Lyme Disease affected your life?

I have had chronic Lyme disease since I was 5.  I’m now 31 years old. I’ve have been suffering neuroligical and psychiatric symptoms since age 17.

Right now I cannot even afford Lyme treatment till next month. My parents both have lyme disease too.

My boyfriend wants to start making videos in case I lose all my memory, as I am now starting to have seizures too.

This disease is terrifying and scares me almost every day but I try to remain focused and positive.

I wish psychiatrists knew more about chronic Lyme disease.

I wish and prayed families didn’t feel so much emotional and physical pain daily as well.

I pray for a cure one day. Not for me but for others and suicide awareness with this disease.

I have tried to kill myself 4 times because of my psychiatric symptoms exploding.

Thank you for listening to my story, you are not alone.

What inspires you?

Yoga every day, animals, photography, love, laughter, writing, family, my boyfriend, the sand between my toes, being on a board in the ocean. Anything that eases the pain.

A quote from my Father, “You must start from where you are.”

A quote from my sister Rachael, “Baby steps, one day at a time.”

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© Image by Life in Lyme Light.

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

My name is April and I own a health and fitness business in San Diego, CA. Until October 2015, I had plenty of energy, an extremely positive attitude, and not many ailments. However, when I was diagnosed with Lyme Disease this all changed.

Prior to being diagnosed with Lyme, my symptoms included extreme fatigue, digestive issues that would leave me curled up in a ball and severe leg pain. I spent months at the doctor having blood tests and ultrasounds with every test finding nothing wrong with me. During this time my normal workouts were incredibly challenging and teaching a class would leave me gasping for air. I was so frustrated that they couldn’t find anything wrong with me (sometimes, not having an answer can be the worst part).

Luckily, I had a wonderful doctor who kept looking for answers. One day in his office he said “I don’t think you have Lyme, but let’s check just incase”. And just like that I became someone suffering from Lyme Disease.

Since then I have found a caring, incredibly intelligent, holistic doctor who is helping me with my symptoms. He doesn’t believe that we will ever “kill the Lyme” because killing the disease would mean harming parts of me as well. He is trying to just make my body work correctly again. I am hopeful that at some point I will be able to live close to a normal life. Currently, my symptoms include leg pain, fatigue, digestive issues, heart palpitations, soreness in my feet, and brain fog.

In addition to my symptoms, Lyme Disease has affected my life greatly! Unfortunately, I think you realize who your true friends are when you are suffering from an illness. Most don’t want to hear about your struggles for an elongated period of time. Also, it is so hard to plan things when you never know how you are going to be feeling on that day. In addition, I find that I am not as passionate about the things that I once was before. This can take a huge toll when you struggle to stay motivated to run your own business.

On a positive note, Lyme has affected my life in good ways as well. The Lyme community is so extremely vast and supportive and I have made some new, wonderful friends. Also, I have been forced to eat the healthiest diet of my lifetime :)

Every person who is fighting Lyme or those spreading awareness completely inspire me! I also love these quotes “You are the only you there is and ever will be. Do not deny the world its one and only chance to bask in your brilliance” (-You are a Badass) and “I am so much more than Lyme!”

Live, Love, Lyme – This is a new group that I just started to promote positivity for those affected by Lyme (it’ll include mantras, health, gentle workouts and food for us Lymies :))

Follow me here on Facebook

, Insta and Twitter: @livelovelyme

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© Illustration by Life in Lyme Light.

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

A life completely transformed due to a single tick bite. It’s crazy to think one tiny little bug can do such insane damage to a human’s body. Lyme Disease is very real and very scary. My organs fight hard every day to defeat the deadly bacteria. Even though my life has completely changed, I am grateful for this tick. It’s like it knew I needed to learn all these lessons about life and death. It is a difficult journey experiencing a chronic illness that has no cure or remedy. But with my faith I know healing is not impossible. God has my life in His hands and I know the lessons I’ve learned during this journey through illness have shaped me into a better human being. But don’t get me wrong, if I ever have another tick on my body… you will hear me screaming and running away like a screeching monkey!!

To my fellow Lymies: Don’t let Lyme overcome your life, let your strength overcome this disease. You are more than this disease. You are a beautiful warrior soul who has purpose. This may feel impossible to overcome. But it’s not. You can overcome anything if you set your heart and mind to it. Why? Because we are more than our diseases, we are more than Lyme. <3 Sending love, prayers, and hope out to you all!

Follow this Lyme warrior’s journey here.

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© Illustration by Life in Lyme Light.

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

When I was diagnosed with Lyme two years ago, I felt relief that I wasn’t crazy after years of misdiagnoses. I felt hopeful because I thought there would be a clear treatment plan. I’ve learned that a clear plan doesn’t exist. I’ve been lucky to work with some amazing doctors and am still pursuing many alternative treatments. I feel better today than I did two years ago, so I’m holding on to that. I’m hopeful that each day I will feel better. Let’s find a cure and Dear Universe, please let’s make it affordable!

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How has Lyme Disease affected your life?

I believe I have had lyme disease since October of 2008. I was undiagnosed for 6 months until I heard of a class mate’s sibling who had lyme and got tested myself. After multiple tests, I got positive one. I never saw a tick or the bite or the rash. I had no idea what or that anything was happening to me when it all began.

I do not like to complain about much and I tried to ignore the, at that time, minor symptoms. I was a straight A student in high school who put a lot of time and effort into my school work. I also ran cross country and indoor and outdoor track for 6 years and was the other component in my identity. I just blamed stress for the changes I initially saw in me and ignored them and kept going. I started to experience increasing fatigue and moderate dizzy/headache spells. My grades started to drop and I found it impossible to not fall asleep in class. My thought process, speech, and memory started to deteriorate. Cross country and track that year became much more difficult. Everything I found my identity in was slowly slipping away.

Eventually, my family started to notice and thought that I got to the point where medical intervention was required. I went to my family doctor for some common stress medication multiple times over the next 6 months. The worst health related injury that had ever happened to me was a severe case of the flu so I rejected the idea that something serious was happening to me. Over the months, I slowly started wondering if something was really wrong and what it was and what it was doing to my body and my life that I worked hard to build.

After the 6 months, I heard of a class mate’s older sister had lyme and how it had affected her. Luckily, I was able to get an appointment with her infectious disease doctor and after he suggested getting tested and a positive results on a third test, get accepted as a patient. At that point, it was summer and I spent the summer mostly indoor and missing out on a lot of good times with friends and was restricted to spending most of my days indoors. That’s when the pills started. It started with around 10 to 30 and at most 69 pills a day.
The next year consisted of everything falling apart even more. I was not able to do Cross country or track. My grades became the lowest they had ever been in high school. The list of symptoms got longer and more severe than before. Extreme fatigue, extreme “brain fog” to the point where I couldn’t even tie my shoes some days, migraines, dizzy spells, hypoglycemia, hypothyroidism, pots syndrome and more. I had to go on various diets to avoid sugars and gluten. Depression started to consume me. I don’t have to explain how alone I was and still am to anyone on this website because everyone already knows what that is like. My body was no longer under my control and in a way, it felt like I wasn’t even living inside my own body any more. As I said in the first paragraph, everything I found value in was taken. I no longer had my self-worth in my grades and intelligence. I no longer had my one and only outlet that was cross country or track. While I still socialized with my friends, I found that communication between them and I became empty and difficult even though nothing had changed between us.

In 2011, the pills had not had any effect to that date so my doctor had me get my first picc line. In the surgery, the pain killer that they gave me for the surgery didn’t have an effect on me and the procedure was quite painful. I ended up having to receive 3 new lines due to scar tissue clogging the line. The spot where the line and bandage covered soon got irritated to the point where I would bleed when the bandage had to be changed each week. My fourth and last picc line gave me a blood clot in my arm which broke free, traveled through my heart, and then came to rest in my lungs. The hospital said it was severe cramps and to rest it off. Luckily I suffered through it and am still here today able to write this story. After that I had the line pulled out. And went back on pills.

Only two of the iv antibiotics ever had an effect. One I was allergic to and made for one rough day and night. The other was the only drug to actually make a positive reaction. It made my health increase to the point where I was able to live a normal life again. That only lasted for a month or two however. The last year of high school my health was so bad that I spent most of it coming home early from school because I couldn’t manage getting through the school day.

In August 2012, my health took a turn for the worse again and I graduated high school and went on to college. College was the hardest thing I have and might ever do. I’m still not sure how I made it through to this day. The first two years are a haze of depression and anger and struggle. It was the most alone I have ever been in my life. College was next to impossible with the brain fog and fatigue. Every class I sat through I had to silently push past what I thought I could in that hour.

April of 2013 I decided, against the advice of my doctor and my own body, I decided to go on a missions trip for two weeks in Brazil. It opened up my eyes again to the world and gave me hope again. When I got back, my health was back to what it was on the good iv drug. I’ve read about multiple things that could have helped my health that was on the trip. I can’t pin one down to this day. Since then, I’ve been off all medicine and have been able to manage a relatively normal life. The last two years of school was just as hard but at that point, but I was more use to school life and learned how to manage my time and energy more effectively to get through it. I was never able to go out and do anything social. I spent all my college days in class or in my room sleeping or working on school work.

I’m currently off any medication. I am able to live a low key normal life. I’m still struggling very much but I’m good enough to keep going and fighting to live my life. I’m very thankful for that fact. I just arrived home from another missions trip to south Africa. The experiences I experienced and knowledge I learned during the trip is immeasurable. I had to sit out some days and miss out on some things I wish I could have done. However, South Africa will stick with me for the rest of my life. In the beginning of January, I am planning on going on a third missions trip to Mexico.

My next goals are to find a job. I am hoping that my brain fog doesn’t make it difficult to do well in whatever job I find. I am also going to become a mentor for high school kids through an organization called Young Life. I am looking forward to helping and sharing my wisdom with the next generation. I still have to fight everything I want each day but my mind is use to the struggle and it doesn’t depress me as much. I am not able to run or do nearly as much as I use to those 8 years ago and I won’t ever be able to again. Every morning I am in physical and emotional pain from the moment I open my eyes and every night I dread waking up in the morning, but I’m content with having the ability to leave my house and being able to go to a job or spend time and socialize with friends.

What inspires you?

One quote I often refer to in my head is “The only thing necessary for the triumph of evil is for good men to do nothing.” (- Edmund Burke) I’ve seen and experienced evil in the world. Lyme disease resting towards the top but not the only one on that list. I can’t change anything about my lyme. But one of the few things that hasn’t been taken away is the choice to keep moving forward. It took me a few years to figure that out but it’s true, at least for me. The one thing that has consistently let me do that is doing the most I can to make sure more “evil” does not prevail in others’ lives. Either on the other side of the world or in my hometown. Helping others is the only thing that I have found through the years that keeps me moving forward.