© Image by Life in Lyme Light.

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

Nancy passed away recently. Here is her “Lyme story”. Essentially, it the SAME story of each one of us. Please do yourself a favor and read it. It is imperative you know the actual facts of this illness. Not one person, young or old, is immune to the dreadfully high risk of this disease.  Sadly, you have a greater chance of misdiagnosis and ineffective early treatment due to enormous ignorance surrounding tick borne illness. KNOWLEDGE TRULY IS KEY TO PREVENTION.

IN MEMORY OF A DEAR FRIEND. REST IN PEACE NANCY WHEELER. WE WILL CARRY ON IN YOUR NAME. WE WON’T FORGET YOU. ?

Nancy’s Lyme Story –– My Life Is Ticking Away

I am Nancy Wheeler, age 68, and I am infected with Lyme/Bartonella. My story is my own, but I have come to understand that it is similar to others.

I arrived at age 67, basically in perfect health. No medications, no sickness, and still functioning on my own. One day, in April of 2014, I was walking our two dogs in the woods on our land adjacent to our house. Everything went as usual or so I thought.

To make a long story short, later on that same day, I discovered what looked like a speck of dust on my left calf. I carefully removed it with a tweezers and realized that it was a tick. I thought the head was out, so I flushed it down the toilet, put some ointment on the post and continued my day.

About three days later, my left ankle was swollen and then four days later, my knee on my left leg was suffering and aching. Seven days after the bite, I was at my family doctor’s office. He didn’t think it was anything although it was plain to see the bite mark. He said, “No bulls-eye rash, it is not Lyme,” and sent me on my way.

The following week I was back and demanded a test for Lyme. He reluctantly did it and gave me a prescription for amoxicillin and sent me on my way. Some time later, my phone rang and I was told the Lyme test was negative. I was told I had rheumatoid arthritis and to come back and get some steroids. He called in a doxy prescription for 10 days and I refused the steroids.

When I returned to his office a month later, I was in even worse shape. The hot potato game began. It was a trip from one doctor to another. None would acknowledge Lyme and things continued to decline. I was basically unable to walk and four Lyme tests were negative.

I had all I could take and looked up a local Lyme support group. They sent me a list of all the LLMDs. Most required large sums of money laid out in advance and I realized that my benefits I had worked hard for for 31 years were no good.

I found an LLMD who was more than 100 miles away who took benefits. He did bloodwork of his own and it was finally confirmed that I had Lyme and Bartonella.

I spent the next six months on a roller coaster of pills, supplements and continued to go ever farther downhill. Almost a month later, I ordered the IGeneX test from California. It arrived the same week that my left foot locked up and refused to move.

My husband forced me to the emergency room at the local hospital. When I arrived, they wanted to know why I was there. I explained that my foot wouldn’t move, was extremely painful and my husband said, “She has Lyme disease.” Of course, they said, “there’s no Lyme Disease in Virginia” and so on… One of the doctors looked at me and said, “You look like a refugee from a concentration camp.” A few months later another said, “Emergency rooms are for sick people.”

When they noticed on my record that I lost 75 pounds, they decided to admit me. Three days later, nothing had been done. That same day an infectious disease doctor came into my room, told me to take some steroids, and see a Rheumatologist. I reluctantly took the steroids and was transferred to a rehab centre. Three weeks later my IGeneX results came back and Lyme was in four of five of my blood factors. I also went to a biologist/nutritionist who took a single drop of blood and you could see the spirochetes flowing through my blood and white cells were embedded with Bartonella.

When I went to the LLMD, they would not venture in IV therapy for fear of being caught. I went back to my family doctor of twenty years and showed him the results of my blood tests. He refused to acknowledge them or treat my Lyme/Bartonella. He said I was self diagnosing and needed to see a Rheumatologist.

I am currently detoxing, taking supplements and going to do bee venom therapy. If I go for IV antibiotics, I’ll have to sell my house, rob a bank or beg relatives for the $25,000 I’ll need that my 31 years of work benefits won’t cover.

Why should any sick person be forced to get treatment underground or go bankrupt trying to get well. I want someone to help us. We are a very sick group—thousands, millions are desperately looking for help. I am on a cane and hold out hope for remission.

Don’t forget me please.

© Illustration by Life in Lyme Light.

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

In March 2014, I graduated from the Institute of Integrative Nutrition, where I studied over 100 dietary theories. Shortly there after, I launched my first Health Coaching business, “Gluten-Free G.” As someone who lives with Celiac Disease, I related to the complexities of adapting a gluten free lifestyle. I coached those recently diagnosed with a gluten intolerance or Celiac Disease. I was successful and loved diving into my new nutrition career.

In October 2014, I started noticing swelling in my left pinky joint. It hurt some mornings, but the swelling fluctuated and I never thought much of it. In February 2015, I fell skiing and broke my right wrist. While at the hand specialist, I asked them to take a look at the strange swelling occurring in my left finger. They told me it was swollen from impact and quickly put me in a splint. All along, I had that “gut” feeling that it was not from impact, but rather there was something going on inside my body. I asked for a blood test, curious if I had Rheumatoid Arthritis. I was quickly shot down, and told there was “no way” I had RA, and if I did, that “they wouldn’t put me on the medicine anyway because then I couldn’t get pregnant.” My opinions were dismissed, however the hand specialist agreed to a blood test since it seemed he did not know what else to do.

A few days later, I received a voicemail saying I did indeed have the RA enzymes in my blood work. I was in shock and tears, wondering how at the age of 24 I could have arthritis. I felt even more terrified knowing RA was an autoimmune disorder that had “no cure,” and was something I had to live with “forever.” I reluctantly scheduled an appointment with a rheumatologist, who immediately wanted to put me on an immune suppressant drug that could potentially effect my fertility. I turned down the medication, left in tears, and was determined to heal myself on my own.

I spent the fall and winter of 2014/2015 with a narrow focus. I cut out all sugar, dairy, gluten, caffeine, alcohol, grains, nightshades, you name it. I refused medicine and took only natural supplements. I fiercely trained for the New York Marathon. I ran a minimum of 8 miles a day to deal with stress and sometimes up to 20 miles after a full day of teaching first grade. I forced myself to put away laundry every Sunday night and be in bed by 8:00. I thought I was eating right, exercising right, and being organized in the right way, but in reality I was miserable.

God, The Universe, Love-whatever you want to call it- will have things happen to us until we finally learn what we are supposed to. Even after a broken wrist, an RA diagnosis, and Celiac Disease I still was not in tune with my Divine Self, nor was I slowing down. In January 2015, I visited a homeopathic doctor who had a “feeling” that he needed to test me for Lyme disease. Sure enough, Lyme disease showed up through my screening. This time, I didn’t cry or flinch. I felt numb to yet another “bad thing” happening. A week later, I jumped off a cliff skiing (not as cool as it sounds) and tore my ACL.

A broken wrist, RA, Celiac, and Lyme disease were not all enough to make me stop, slow down, and take better care of myself. At the time, skiing was everything to me. It was what I identified with, it kept me sane, it was a time outside, a time alone, and a time with friends. And now the escape was gone and all I could do was face myself. My surgery and recovery process was nothing glamourous. It was painful, lonely, and I felt like I could not take one more diagnosis. Since my body was in shock from the surgery, my Lyme disease (along with three of the Lyme co-infections) reared their ugly heads.

This time, I had no choice but to slow down. I could not walk for a couple weeks. The way I fell bruised my knee bones so badly I was told I should not run anymore. Running, skiing, moving quickly-all my “escapes” and identities were stripped from me.

It was not an overnight process, and I’m still learning today, but it was during those dark, painful times I had to make a choice. I had to make a choice to heal myself. And the only way to heal myself was to love and accept myself. I accepted my autoimmune diseases. I accepted that I could no longer run. I accepted that I was single at the time. I accepted when I gained some weight before the surgery and loved myself when I lost too much after the surgery. I accepted that I made a mistake to jump off a cliff. And with all that acceptance finally came a pure love of myself that set me on the journey of whole body healing.

In time, my knee got stronger, but I knew I could never go back to my old ways of moving too fast. I finally gave myself permission. Permission that it is ok to go to for a walk instead of a run. Permission to take a nap instead of going to yoga. Permission that it is ok if your laundry is not put away on a Sunday night or if my bed is not made up perfectly.

I’ve learned it all comes down to balance. Today, my ACL is healed, but my finger is not. Lyme continues to show up in my blood-work but I feel I am on the path to healing. I learned how Lyme disease is the “great imitator”-meaning it mimics other autoimmune diseases like RA and MS. It became unclear whether I actually had RA or whether it was solely the Lyme all along mimicking RA in my body. My doctors still are unsure, and I know I will never have a medical answer to whether it is RA or only Lyme. My intuition feels that Lyme is indeed the great imitator, and I do not have RA. I do my best to avoid negatively naming all of these diseases. I find it only gives my ego more power. I feel it is better for me to accept my imperfect health and then let it go! What’s the point in thinking about it all the time or feeling sorry for myself?

My achy joints feel better, but the Lyme disease still lingers.  I’m grateful I have a doctor who treats my Lyme disease. Some days I feel great, and other days my body hurts. I take antibiotics when prescribed, as well as natural supplements to reduce inflammation. Sometimes I have kale for lunch, sometimes I have gluten-free pizza, and sometimes I have both. I believe in the importance of slowing down, taking care of myself, and eating in a way that best supports my body without deprivation. I practice mindfulness which sometimes can be as simple as a deep breath or an act of gratitude. My health is not perfect and neither am I.

Whole body healing

is a journey and I am evolving along the way.

Butterflies have been my symbol of hope throughout my whole Lyme journey. The yellow swallowtail always “shows up” and I truly believe it’s a sign of grace guiding me.

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

I had to take down all my collages in my room today. I made this one when I was 13 and bedridden. I was told by my doctors I may die. I spent my days laying in bed half unconscious with my parents coming in hourly to feed me my meds. I was hopeless, depressed, and angry. I was sick of staring at a blank wall all day long so with everything I had left in me I created a collage that made me feel happy. When I looked at it I was able to forget the fact that I was sick and I only saw my dreams and ambitions. Something so simple as this collage took me months to finish because I was too sick to be up for more than 10 minutes a day but it was worth it. Every time I wanted to give up I just glanced at it and remembered what I want to accomplish in this lifetime. For 3 years of high school and middle school my bedroom was all I knew. I couldn’t leave my bed let alone my room. It eventually became the only place I felt safe. Saying goodbye to my room for good where I spent most of my adolescence in is insanely difficult. It’s hard to say goodbye to a room that you’ve almost died in. But as I pack everything up it also feels like that part of my life is coming to an end and this new chapter of health is entering into my life. A chapter where I’m not bedridden and caged into a room for months on end. A chapter where I am able to fully function and live.❤️

© 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.”

story40_web

© 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 :))

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: @livelovelyme