How has Lyme Disease affected your life?

In an instant, one tick bite changed my life forever. I was around 7 years old and didn’t even know what a tick was, let alone what it would lead to. The life I knew as a very active and healthy child began to decline. From around the time of that first bite (which I had quickly forgotten about) all I really knew was something was different about me and I never felt well. I hid behind a smile while I was in physical, emotional and mental pain. That first tick bite led to many diagnoses and too many medications to count. I was in and out of doctors offices and hospitals being told my case was too complicated for several years. I am now 39 and have seen hundreds of doctors and have been to many treatment centers trying tirelessly to recover from the numerous conditions I had been diagnosed with along with the illnesses I was misdiagnosed with. I became very lonely, isolated and even questioned if fighting this extreme pain was worth it. I am very determined and decided I would not give up. Somehow I would have to find out what the root cause of more than 70 symptoms and several illnesses was. I figured I hadn’t been through such excruciating pain for nothing. I knew my purpose was to one day help motivate others through their struggles. About 5 years ago, I was bitten by another tick and had the rash that proved beyond doubt that I had Lyme Disease. Several doctors still refused to do the lab work, but I continued to fight for an answer.

The first time I was finally tested for Lyme Disease the doctors said there was no way I had Lyme Disease since the test came back without a clear cut answer, which according to them meant every single symptom must be due to Migraines. As frustrated as I was, I wasn’t done. I love to research and did so for months until I could figure out what needed to be done. I knew I had to fight harder than I ever had as my symptoms became so intense that I could barely walk. My brain was deteriorating and I had to act quickly. After much research and many phone calls around the United States, I came across a clinic in Florida that I believed could help me. As soon as I could, I got on a plane with my service dog Cooper and arrived in Florida a day before I met the Doctor who immediately knew upon extensive testing exactly what was causing every single symptom on my list. I not only had Chronic Neurological Lyme Disease that was affecting everything from my head to my toes. I was also diagnosed with many co-infections, Mold poisoning and Chronic Fatigue. Not one drop of my blood was Lyme free. Yes, it may have taken almost 30 years to find the treatments I needed, but I did! It felt good to know with the support of some wonderful people along the way, I never gave up. I loved Cooper, my family and those who put hours into helping me, too much to stop fighting. I was very blessed to be able to get to Florida three different times for months each time to receive the IVs and other treatments I desperately needed. Every symptom was improving, but because Chronic Lyme Disease Treatment is not covered by insurance, I could no longer afford the treatments I needed. I do believe these treatments saved my life. After learning that there is no cure for Chronic Lyme Disease I now know major flare ups will continue to happen. I am getting worse and the flare ups are lasting longer. I am scared, but the fight will go on. I am currently exploring more ways to improve my quality of life. I don’t want to only exist… I want to live!

I do not want anyone else to suffer from this horrible disease. Please educate yourself about Lyme Disease, prevention and how to get treated right away. Not only are human lives affected, but dogs’ lives are too. If you have even a slight feeling you may have been infected, please get checked by a Lyme Literate Doctor as soon as possible. If your dog may have come in contact with a tick, please get to a veterinarian right away. Lyme Disease has been reported everywhere in the World except Antarctica. You don’t have to live in certain areas to be infected and you may never see the tick that bit you or your dog. This disease can not only take over your life, but it can take your life completely.

Please remember that Health is Wealth. Never take one day for granted, especially a safe and healthy one.

What inspires you?

I want to thank my sweet dog Cooper for being by my side through this. He knows I’m sick and lays with me for hours at a time, making sure I know I am never fighting this disease alone. He keeps me going even on the hardest days. He is my main reason to fight for my life; him, the people I love, my faith and each person who is also fighting chronic illness.

“Look for something positive each day, even if some days you have to look a little harder.” ~Unknown

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

Lymie friends. Please tell me your horror stories about how you were mistreated by the hospital, doctors, ect. I have been many times. 

Before I knew it was Lyme I would take a trip to the emergency room. They would run all kinds of tests and find nothing. After the first few visits my chart was red flagged and if I would go I would get the speech on how I was wasting their time and not to come back. I was kicked out of my family doctor’s practice after 2 years of searching and getting my Lyme diagnosis. He told me that I was faking and that I just found someone to give me an answer to being depressed. Yelled at me and my mom. Told us to never come back. I have also had some doctors where they were non-believers and I have talked above their heads and made them think before they speak. I will have to say, that’s what I hate about most doctors; that they think they are God and talk over your head. Not my head anymore. 

You must get educated on your illness. Ask questions. Be your own advocate. But enough about me I want to hear your horror stories. I want other non Lymies to see what we go through. Thanks.

How has Lyme Disease affected your life?

Apparently I’ve been sick since high school. I am now 35. I never had the rash or fever. I never had the tell tale signs. My high school life, into my twenties, my life consisted of conjunctivitis ALL the time. Chronic fatigue that no one believed. I slept my life away growing up. I have never been a person that wanted to go to the doctor for small things. I was young… I wasn’t dying… what could possibly be wrong with young, fine, me? 

In my 20’s still fighting fatigue, I started Olympic lifting and I felt great, but I’d always hit that fatigue wall. I thought I was narcoleptic. Then the pain started. My legs, below the knee… swelling, pain every time I worked out. What’s this now?? I ran a few mud runs, the last run my legs and ankles and feet swelled up and it did not go away. Two weeks later I was in surgery for chronic compartment syndrome. They never got better. 2018 my mom passed away, 2018 I had compartment surgery #2 on my legs, late 2018, I started vomiting and getting hives. Puking alllll the time at least 2-3 times a week for no reason. It was manageable because I would puke and get on with my life. Hmm what’s wrong with me? I puked for about a year… late 2019 I started to get heart palpitations, chest pain, this overall feeling of I’m dying, the heck. I was in and out of the hospital for months. The only thing they could tell me was that my thyroid was messed up. Got in levothyroxine, hey my puking stopped. That must be it. 

Months went by… into 2020 in and out of the ER, heart palpitations, chest pains, getting more and more dizzy spells, vertigo, headaches, muscle aches, weakness, fatigue, heartburn, numbness, memory issues, breathing issues, vision issues… what the heck is happening to me??? 

Finally my primary did a tick panel and I came back with Rocky Mountain spotted fever and Ehrlichiosis. What?! I was so surprised… the first thing I did was find a Facebook support group and found a Lyme literate doctor. I found out I have Lyme, babesia, hypothyroidism, EBV, among the others. FINALLY! Something!!! So I’m on the long road to some sort of relief. Listen to your body! You’re not crazy!

What inspires you?

My inspiration right now are the people that are trucking through these invisible Illnesses. Not just Lyme, but other autoimmune diseases. One thing I know I can do is be a trooper through this mess.

© Illustration by Life in Lyme Light.

© Illustration by Life in Lyme Light.

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

In honor of Lyme Disease Awareness Month, I wanted to do a post but also hesitated because to me and the hundreds of thousands of other patients who have walked this journey, our struggles are not confined to 1 month… for me it has been a process of nearly 12 years come May 19th and seven of those years have been an all out fight for my life.

How do you sum up the minutes, hours, days, weeks, months, and YEARS of some of the hardest and most difficult moments of your life into a little square? I honestly don’t think that you can… BUT what I do hope is to encourage those in the dark that there is light and hope.

That while I still have some treatment left (for other health issues and recovery from the damage) healing is possible, because the healing that so many of you have been praying for more than half a decade is truly happening and I know complete healing is coming.

The picture on the left was snapped years ago, before I started with my current medical team. I was once again in the ER and had just been told by 3 well known medical facilities that there was “no hope” for my case. I had also been told that I should be prepared to die in the next few months.

7 months after that picture was taken, I found my current main medical team and in my first conversation with my kind doctor, I told her that if I was going to die, to let me know. I felt at the end with no hope. She looked at me and firmly said, “You won’t die. We will fight to not only save your life, but get it back.” I immediately broke down in sobs. She went on to tell me that it would be the hardest fight of my life that I ever had and it was/has been.

I have been offered several times to write a personal book of my story and maybe someday I will, but it feels impossible to share the details of those dark and hopeless days… It’s been 5 years of intense treatment, thousands of oral meds, hundreds of shots (both and homeopathic), months upon months of IV antibiotics, hundreds of nutritional IVs, thousands upon thousands of vitamins, oils, and supplements, 1 PICC line, 1 Port, countless doctors appointments, exercise therapy, thousands of alternative treatments (including HBOT, acupuncture, reflexology, detox, – the list is incredibly long etc), hundreds of smoothies and daily cups of greens (something at one point I was told I would never be able to eat again), lots of tears… lots of laughter in pain… emotions and discouragement beyond words, thousands upon thousands of hours of prayer… but in the darkness there has been so much grace… 

The kindness of loved ones, of amazing parents, of my family, of the best doctors, nurses, MAs and staff that you could even imagine… of financial donations that allowed me to get treatment at the sacrifice to themselves, laughter, and most of all hope.

I recently got a 2nd opinion on one of the health issues I am still needing treatment for (Mycoplasma Pneumonia) and this well known doctor told me…”I’m sorry I don’t see much hope for your case…” I looked at him and actually smiled. I said, “I know you don’t and 2011 Rebecca might have agreed with you, but 2019 Rebecca is here to tell you I will visit you when I have beaten it.” Don’t let ANYONE tell you healing isn’t possible.

Thank you for your prayers which has gotten me to the picture on the right (taken recently)… A girl who is still in treatment, but truly healing and has seen the goodness of the Lord. I weep as I know what it is to be cared for tenderly by God. “The Lord has done great things.”

Oh… and Lyme Disease Awareness month? My prayer is to live in a world where it is not necessary because healing has come. #takethatlyme

Click here to learn more about Rebecca and follow her luxury travel adventures.

© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

I was diagnosed after failing out of my third year of college. The doctors couldn’t pinpoint how long ago I had contracted Lyme, but estimated it had been about 2 years. I didn’t have energy to get out of bed and while there was pain, what I found most debilitating was the brain fog. I remember a moment during a bad Lyme week laying there feeling helpless and thinking, “This is so boring and I am sick of feeling weak”. I realized that if I continued to allow myself to feel consumed by my illness, I would never be able to get back up again. Motivated by this fear, I found the strength to keep moving. After 8 years of stubbornly pushing myself through tears and massive amounts of doubt, I am finally completing my BS in Clinical Laboratory Medicine! I still have days of bad brain fog and flares, but I have come a long way and I am not stopping.

What inspires you?

“Life before death. Strength before weakness. Journey before destination.” -Brandon Sanderson, Stormlight Archive

It’s something I whisper to myself every time things get tough.

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

 I share many tools for transformation as I believe we are bio-individual. What works for one, may not work for another. 

Given my experience, research and state of disease, trial and error was the name of the game. This ultimately strengthened my intuition and shaped my life direction.  

When I discovered PSYCH-K® and Bee Venom Therapy, I felt I had a responsibility to share this magic medicine with others. I knew that people healing from a chronic illness could benefit from the powerful effects connecting mind, body and soul.

“Healing from Lyme teaches you how to unconditionally love yourself, others and how to stay in the vibration of love.” 

~About Adriana~

Adriana created an ebook called the “Beginner’s Guide to Bee Venom Therapy” detailing her journey and resources for getting started. She credits the honeybee for saving her life. 

Adriana is a PSYCH-K® Facilitator. P-K is a simple way to communicate directly with the subconscious mind, based on the biology of belief. This process allows us to transform and shift limiting beliefs and traumatic events within a matter of minutes. 

 To get the guide or book a 1:1 session, visit @somethinghealing somethinghealing.com

Floral watercolor painting in shape of butterfly

© Illustration by Life in Lyme Light.

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

May <3 Lyme Disease Awareness Month

I truly believe things happen to you for the Highest of All Good. I would be lying if I said that this hasn’t changed my life in the most drastic ways. Actually having to listen to your body, listen to your heart, be your own best doctor and advocate, say no a million of times, lose people who aren’t adding to your healing, being your own caretaker, and still participate in life outside of your healing is intimidating to most, this isn’t for the weak. 

That is one thing I have learned along this journey, I look at myself in another light, I am one of the strongest people I know, along with all my other lymies and other people, suffering but choosing to never give up. It can be the easiest thing to become a victim to your disease, but I’m living each day to be a reminder to others that you’re so much more and this is just a part of the journey. It’s okay to love and hate it. It’s frustrating at times, it’s soul opening at others. I wouldn’t wish this upon anyone, but I also wouldn’t wish a different life because it has made me the most resilient.

When your body goes through so much and fights for you everyday, there really isn’t more to be thankful for besides the fact that you have this power inside that is stronger than you. Peeling back layers and layers at a time to reach the true Divine. One day is coming, coming sooner than I expect.

I’ve been fighting for the past 5 years and have gained full faith in my intuition to lead me to the right treatment for me, and becoming my own best doctor. <3

How has Lyme Disease affected your life?

For those of you who do not know me and my story… My name is Lisa and I am batting late stage chronic and neurological Lyme Disease and several co-infections. I was misdiagnosed for over 3 decades. I was told over the years that I have Fibro, RA, Chronic Fatigue, Asthma, etc… Little did I or anyone know that I contracted Lyme when I was a teenager and it has been the cause of most of my symptoms, unnecessary tests, MRI’s, scans and surgeries. Now in my late 40’s, I was scared yet relieved to finally have a diagnosis. I was scared yet happy to finally have a path to follow. My healthcare team and family have been amazing and I quickly learned who would be there for me during this difficult time. <3

 Having an invisible illness makes it even more difficult and frustrating during this battle. People always say… you don’t look sick… yesterday you were fine… you look great… etc… What they don’t know is that some days it is a struggle to get out of bed, or do simple tasks like take a shower, cook, or go for a walk. Other days (better days) it feels so good to feel happy, to have energy to get a few things done, to visit with friends and have fun with my family.

It’s so frustrating that Lyme and other Invisible Illnesses are not recognized the way they should be! We may not show physical signs of an illness like losing our hair, wearing a cast, or anything obvious to the eye, but these invisible illnesses are destroying lives – attacking their bodies one organ at a time, destroying marriages and relationships and/or losing hope because they are not being heard, they are not being diagnosed and they are not being treated properly.

What inspires you?

I keep reminding myself to stay strong… to stay positive… to look at the positive in every situation. It is challenging at times… especially as I am going through 9 months of intense IV treatment. This is my 4th month of treatment. One minute, I think I can’t believe that I have 5 more months to go… how am I going to deal with the pain, the herx reactions, the debilitating fatigue, the nausea, etc… but then I try to remind myself… heck yeah… I am half way through… I can do this! I have had a lot of ups and downs. Some days I feel like total crap and other days, I feel somewhat human and it feels so good to get out of the house and to feel the sun on my face. It is the little things that make me happy… that help me push through… that gives me the strength to battle this horrible disease. I truly appreciate my family and friends (old and new) who have been so incredibly supportive, who have been there no matter what and of course my new fellow warriors! We can do this!! We deserve to be healthy & happy!! Let’s support one another and battle our invisible illnesses together!! <3

© Illustration by Life in Lyme Light. Sunflowers

© Illustration by Life in Lyme Light.

How have Lyme Disease affected your life?

Hey everyone! My names Megan and I got diagnosed with Chronic Lyme Disease in Summer of ‘18. My doctor believes I got it congenitally from my mother. I first noticed signs of Lyme disease when I had a lot of neurological problems (slurring speech, falling, loss of balance, severe brain fog) and I knew something was off. I went to more doctors than you can count on your fingers and they all told me the same thing, “Maybe it’s just psychological, I think exercise and diet will help.” [eyeroll] I was not going to accept this answer. I knew something was wrong. 

My anxiety began to spiral downhill and I knew I needed to seek the right help fast. I started going to the Lyme Clinic that my mom goes to (she also has Lyme) and my whole world has been turned upside down. Some in a good way, some not, but overall they did find out it was Lyme and I am being treated for it accordingly. This whole journey has been a process, but I try to count my blessings each and every day that I am finally seeking the help I needed. 

What inspires you?

Just a piece of advice for anyone struggling with Lyme Disease, don’t give up. The healing process is long and hard, but it helps to surround yourself with a strong Lyme community. Love ya’ll <3

Illustration by Life in Lyme Light, wood butterfly

© Illustration by Life in Lyme Light.

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

By now, many have either heard of Lyme disease or, perhaps, have a friend or relative who’s cousin has it, has had it, or something to that effect. As hunters, we willingly put ourselves at risk. To avoid Lyme disease, many doctors advise staying out of the woods. Well, to nearly anyone reading this: for hunters, that just isn’t an option.

Fall of 2018 marked my 10th season hunting. Completely self-taught, never guided, just pure grit and worn-out boot leather is what I have to account for the majority of my success over the years. Having no real history with the outdoors and hunting (my father hunted a couple of times when I was very young), I have made all of the mistakes, but I’ve learned from them, too.

One of the biggest lessons I’ve learned from…

About three and a half years ago I had one of the best seasons I’ve ever experienced. I had killed a cougar and a bobcat from the same tree on consecutive days, then made a last-day, last-ditch effort to kill a late season elk and I successfully notched a tag there, too. And, I accomplished all of that with my bow. I can’t recall which pack out it was, but I do remember extracting a tick from the front of my shoulder. It was in that spot under your backpack strap that is bound to be irritated anyways, so it was easy to miss. Once I pulled that tick out, I discarded it and didn’t think anything of it. That was my detrimental mistake. Not that I threw it away, which was also a mistake, but, mainly, because I didn’t think anything of it.

Fast forward about a month later and I was extremely ill. Fevers came and went at random similar to that of the flu only worse without any stomach or gut issues. My blood pressure was also spiking, causing me to feel faint or lightheaded at times. I would wake up in the middle of the night feeling like my chest was going to explode in pain, heart racing and pounding so hard I thought I was experiencing cardiac arrest. This went on for about three months with no rhyme or reason to it at all. I saw doctors who just thought I was “aging” and needed medication to control my blood pressure, which just “masked” the symptoms. Meanwhile, I was 28 at the time and in probably the best shape I’ve ever been. I ate healthy, led an active lifestyle, etc. I had a hunch that Lyme Disease was the culprit, so I asked my doctor to order the test. After the end of that summer, the fevers had subsided, I was on three medications to control my blood pressure (which we later learned I didn’t need) and I was left with just an odd sense that something was wrong even though I was assured nothing was.

For the next year and a half, I experienced some on and off mild depression and anxiety that I really couldn’t explain. Some days I would just sit and not do anything at all in an odd trance-like state that is still hard to explain. Then in February 2018 the state of mind I once knew as normal was gone, long gone.

Out of the blue one day while working, all of a sudden, I had this overwhelming feeling that I was going to cry. And not just a couple tears, but it felt as if someone had just called me and told me that something terrible had happened to a loved one even though nothing of the sort had. I couldn’t control the feeling. Nothing gave me any relief. I tried every at-home remedy, did everything the doctors asked of me, still nothing. At that point, I knew something was wrong. Chemically, something had to be messed up. If I couldn’t get myself out of this weird depressive mood, what would? I haven’t been the same since.

It took about another four to five weeks of research, struggle and anguish, seeking out doctors to no avail, finding doctors with six-month to year-long waiting lists and, then, finally finding a doctor that would listen.

She successfully diagnosed me with Lyme disease via blood test and I finally had some relief. I didn’t know much about Lyme disease, but I was happy to have an answer.

Throughout the next few months, my disease progressed rather rapidly. I developed a startling reflex in which sudden noises and movements—even light flickers—would startle me. I was having seizures and panic attacks simultaneously and uncontrollably. Sometimes, while driving, I would have to pull off the road to endure a 30 to 90-minute convulsive seizure, then continue on my way. The depression is unspeakably dark and has been so deep and just overall nasty that I had to ask my wife to hide our guns. Most people will not want to hear this, but it’s the truth. I’ve gone through it; I’m glad I’m here. I wouldn’t want it any other way, but I get it. Recently, one of our own in the hunting community took his own life and, although tragic, I can honestly say I understood. The state of mind a person goes through while suffering from the sort of depression that puts you in that mind frame is not easy. I haven’t been able to do it alone.

Along with the depression, anxiety, seizures and all that other fun stuff, I also started to lose the nervous system function on my left side. I started to drop things with my left hand way too often. I would trip over my own left foot constantly. My gait was off. One of the doctors who eventually helped get me back to semi-normal said that a lot of the infection was in my brain, which also explained the insomnia. On most days, I have a buzzing like sensation in the left hemisphere of my head, down my neck and into my upper back. The best way I’ve been able to explain it is the sound of neon lights buzzing. That keeps me from sleeping.

Oddly enough, the moon has also been a factor. You might think I’m crazy, but I’ve patterned it out over the past year and, when the moon is full, the week surrounding it is hell for me. I typically will get two to four hours of sleep a night, I will burst into tears at random, the startling reflex will be on red-alert and, then, the depression will creep in. Usually, about three to four days after the full moon things, I start to feel okay again.

Honestly, I could probably write a novel on the various symptoms and how they have affected my life, but what I really want to accomplish is just some general awareness. Something I wish I would have taken more seriously a few years ago, could have saved me tens of thousands of dollars and years of a consistent struggle to feel decent on the day-to-day.

So, what should you do if you get bit by a tick?

Well, there are about a million old wive’s tales and theories on what to do. I’m not an expert by any means, but I have done about 200 hours of research and I can tell you a couple of things to look out for in case you have a run-in sometime in the future.

Out of all the research I’ve done, the best and most uniformly recommended way to extract a tick from your skin is simply to use tweezers, grab the tick from the top and bottom of its head and slowly pull it out. Theoretically, it should dislodge and be able to be placed in a sealed container. This is what I did not know before, but you can actually mail that tick to a testing center and they can tell you whether or not it carries Lyme and/or its co-infectors. However, the tests are not always accurate, I would also caution that you be mindful of your well-being. If you feel flu-like at all—body aches, headaches, muscle aches and cramps, which are otherwise inexplicable—get to your doctor. The doctors used to say just look out for the “bullseye” rash; however, that has been proven to only be true for less than 40% of people who contract the disease.

Another idea is straight prevention. Picaridin and Permethrin seem to work the best as repellents. I’ve also found an essential oil mixture called “Bug Bouncer” that works pretty well. Yet, you can only spray your clothes and wipe your skin so much. The best thing to do is just check yourself, especially in the spring when they are the densest.

Now, I’m truly not writing all of this so people will feel sorry for me or give me attention. I want the attention to be brought to the hunting community. I want people to know just how bad it can get.

I never imagined a bite from a tick could change my life in such a dramatic fashion, but it did. I want my fellow hunters to be aware of the dangers and not take it for granted. For another look at the impact that ticks can have on hunters, you can check out this article, Tick awareness and prevention for hunters written by Kristen Schmitt.

In the end, be your own advocate.

Read more articles by Justin Klement on goHUNT.