Life in Lyme Light Posts

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

Thank you to all that follow my Instagram (@outdoorsyadventures8701). So as you may have noticed I haven’t been doing a whole lot of outdoorsy stuff lately. Here’s why — I was diagnosed with Lyme disease quite some time ago. Makes sense given that hiking and spending time with nature is my passion. I was treated after years of fighting with doctors and finally got them to test me. Positive! 

Now since I was not treated within 2 weeks of being infected I continue to battle symptoms and unfortunately until CDC, FDA and other medical organizations finally come to an agreement on a proper true treatment symptoms can linger for years and treatment is none of existent for chronic Lyme sufferers. Seems there may be some corruption in those guidelines to treat Lyme and as a result many people are suffering and doctors who want to help are having their licenses yanked and face lawsuits by the corrupt organizations writing those treatment guidelines. 

So… Yes weather is perfect, but please before you hike wear long pants, cover yourself with DEET and follow all other recommendations to keep yourself and your kids and pets tick safe. If you are bitten and have immediate symptoms insist that you get tested immediately. Doctors in Ca are ignorant to Lyme and have no clue what to look for and don’t let them tell you Lyme does not exist in California. It does!! And it is on the rise. Google CDC stats for numbers. Again, keep yourself your kids and pets tick safe this spring and summer as we enjoy the outdoors. One bite can turn your life upside down. Be safe ✌ Peace out!

“Like a butterfly stuck in a chrysalis waiting for the perfect moment. I was waiting for the day I could burst forth, fly away and find my home” – Emme Rollins

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

May is Lyme awareness month and I wanted to share a beautiful image – a small selection of butterflies representing stories from Lyme Disease sufferers (butterflies from stories shared here!) I wanted to pay tribute to each and everyone of them and send love, light and hope for their healing journey.   Ƹ̵̡Ӝ̵̨̄Ʒ 

In the last 18 months, since I received a positive diagnosis for Lyme, I have learned so much about this debilitating disease, which is caused by the borrelia virus carried by ticks. I have been studying Nutritional Therapy at the College of Naturopathic Medicine and decided to take a year out before my final year to research more about Lyme and complex chronic illnesses which so often go hand in hand. Although diagnosed with ME at age 19 my real healing journey began about a decade ago, however I was relieved to finally get to the root of what had probably triggered my chronic fatigue, gut symptoms and autoimmunity for all these years.

During this last year I have met so many amazing people who suffer with Lyme and related illnesses and I have been blown away by their strength and determination, and how despite their symptoms they keep going everyday in pursuit of their health. For without health we have nothing. Lyme is a poorly understood disease and finding answers is not easy, getting treatment even harder, as it’s so often very costly and still largely not understood or recognized by the healthcare profession so many people are not as fortunate as me.

During this current time of isolation we find ourselves in, there is much that can be learnt from people suffering with Lyme or any chronic illness. These are people who have had to adapt to living in isolation, who understand grief as the life they knew was lost, live in fear of what the future holds, often lose jobs and each day must learn to take utmost responsibility to support their health. All of which many of us are now facing.

My gratitude goes out to everyone who has helped me on my journey to recovery… the naturopaths, the healers, the therapists and other Lyme sufferers I have learnt so much from each and every one of you. I now wish to shine my light in helping others on their healing journey.

For more information about Lyme Disease visit lymediseaseuk.com

How has Lyme Disease affected your life?

Lyme will never completely disappear, mostly the tests can only show a very aggressive form, which means that if you have it “under control” the tests won’t show it anymore. But it’s like a sleeping disease—you can’t see it and can’t find it, nor cure it. It’s always there but we’re to try to keep it under control. 

I’m working with a holistic doctor who’s really great. He teaches me a lot about my body and my illness. He’s devastated every time a treatment doesn’t work for me. When I was a baby they put me on vaccinations and put them 3x as strong because a lot of babies were dying from coughing disease (I don’t know the English name), so my body had to fight so hard to get the thing out of my system—that now I don’t accept any medication. 

We’ve tried so many treatments and medications but I’m just getting sicker, I had to stop doing my sport which is my life, and I’m now trying to work my body because I’m losing my strength and feeling in my muscles. It sucks it really does.

Nothing helps yet, just trying to workout and get my condition up. I notice it’s better to go for a walk instead of staying in bed — all day in bed days.

What inspires you?

“If I can do all the things so well and stay so strong while being so sick, how well would I have been if I wasn’t sick?”

How has Lyme Disease affected your life?

I grew up in North Carolina where they say there is no Lyme disease. I lived in the woods like any other kid and found ticks on me, embedded, all the time! I was a healthy child growing up. Then at the age of 19 I was diagnosed with Endometriosis… from there Chronic Fatigue and Fibromyalgia. I was always told I was just looking for attention and needed to see a therapist.

After raising my children on a farm at the age of 43 I started with more symptoms. Heart issues, neurological issues and seizures. One day I had to be rushed to the hospital. No one knew what was wrong with me and referred me to other doctors until they started telling me that they didn’t want to/couldn’t help me. Researching on my own I found a doctor who would test me for Lyme. Came back borderline CDC approved, so we sent my blood to Germany where I was told I had Lyme Disease with 9 coinfections! No wonder I felt so bad! 

Finally, I knew what was wrong and now I could get well. Not the case… many different medicines and tens of thousands of dollars later, I now fight for a day to just be able to cook a meal for my family, or a quiet visit from a friend. Chronic Lyme Disease took away who I am as a person. I’m still fighting to get her back! I won’t stop till I do!

What inspires you?

My faith inspires me. Knowing there is a bigger plan for me. Trusting that one day I can help others with this awful disease.

My family inspires me to get well, so we can be what we once were.

Two quotes always inspired me… even before I was sick.

1. Lord, let them see You in me. (The way I handle my illness is key).
2. God’s purpose is greater than our problems. (He knows what I was created for).

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

Hi everyone.. I’m going to tell you a story about me and my Lyme… we were raising a cow at a friend’s house in 1995… In July it was time to hay. So yes all four of us were in the field doing what needed to be done to feed the cows for a long cold winter in Minnesota!! It was a hot sunny day, good day to cut the hay and get the ball rolling!! We needed a break and to get something cold to drink. We went into the house and had watermelon. While we were sitting there I discovered what I thought was a NEWLY BORN TICK…Little did I know this tick was carrying LYME…As I played with it it was so tiny you could barely see it…we sat and ate our melon so as to get back out to the hay..!! Just before we left I squeezed (not what to do) the tick with my finger nails and away we went outside! 

Shortly after I had flu-like symptoms that seemed to get worse as the days passed, so I went to my doctor and had lab work done, she told me I think you have Lyme…I said what is that..? Well we will wait for tests then discuss it…Fast forward…Test were positive and did atbx for 6 months..! Would stop and it started right back maybe even a bit stronger then the first time! 

I next did IV‘s for one year!! Spent my days in bed with a nasty headache and a body that was not happy. After the year was up I was doing ok not cured, but I was able to get around. About three to five years…Then bam it came back…Crazy I know. So when you see someone that has Lyme if you can do the littlest thing for them please do it!! This is an awful disease with no cure!! They will thank you over and over.. 

As time went by I tried many natural ways to fix it some helped some not!! About 4 years ago I followed my Now up-line Cathy, she too had Lyme or so we thought…She also tried many things to get well some helped some not!! Then she found TRU. As I watched her I noticed big changes in her and kept following her!! I guess I waited about a year, maybe longer before I took the jump into it!! Still saying is that really making her feel better??…was I gonna get taken again by something else that does not work?...Spend untold amounts of money for someone else to get rich and still be sick every day?! 

Well I finally got my nerve up and took the supplements she told me to get…I went very slow, took brakes but did notice little things that changed. Not as much change as I expected but less pain, clearer head and could sleep big time all night!! So I stuck with it!! 

Today I’m out of my wheelchair!! Can now do things I never thought I ever would again…Like paint my doors…cook a whole meal…I even was able to go out in crowds of people!! Got in a car accident in January of this year!! Kicked my butt!! Pt again back in pain all over, but I’m not stopping. I know this will pass and I will be back to where I was mowing the lawn, camping, doing what I want, even driving!! It’s just a bump in that darn road!! 

So you see it’s not just about people making money off of you, they truly are angels sent to help us get well!! To them and me it’s about getting healthy detoxing the crap I took for years! I have made some wonderful friends since I started these supplements and I will never stop them. A one week sample is less than a meal at Mcdonald’s (yikes I never eat there)…Cathy is a wonderful coach and knows a lot about chronic disease. She was said to have many!! When it was mold that kept her sick!! Along with Lyme… Don’t watch the days pass by looking out the window!! Get your health back and live a healthy life once again!! TRU Health to you all!!!…Char. <3 <3 <3

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

Doctors kept telling me I was depressed and in menopause. They were sadly mistaken. Took over a year of sweating profusely, averaging 2 hours a night of sleep and lethargy.

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

Over 3 years, and over 15 doctors to come up with the diagnosis.

I was told it was all in my head. Told I was crazy. Told I was a pill seeker for Xanax and other benzodiazepines.

I had to take medications while I was pregnant that jeopardized my pregnancy—because again—I was told it was all in my head.

Neurologist, endocrinologist, spinal therapists, general practitioners, cardiovascular surgeons, nurse practitioners, orthopedic doctors, chiropractors, physical therapists- no diagnosis.

Finally in February of this year, I went to my general practitioner’s office and said enough is enough. Nothing is working, I’ve been on every anti-anxiety medication that could possibly be prescribed—and I’ve had no results.

I made it so known that if they didn’t want to run anymore tests, that I wanted it documented in my charts, and that I would go elsewhere. That is when they took me seriously.

IGG and IGM positive. Spread to my brain. Currently I have a picc line in my arm after 30 days of oral antibiotics and antivirals.

I never thought this could be me. Never in all the years did I think it could be Lyme. I’m so happy to finally have an answer, but so scared because of how divided the medical community is on this issue.

One day, I hope we live in a world where we know that this disease can be transmitted from mother to fetus, from spouse to spouse. Lyme claims over 400,000 lives a year, but yet we are so focused on a “flu-like,” virus that has virtually shut our country down. Bring awareness, bring hope, and keep fighting warriors!!!

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

This last week I pushed my body to the limit with a new treatment. I haven’t felt body, head, and neuro pain like that in a long time. I could barely walk to get to the bathroom today. Didn’t eat until 3pm. The last week I’ve been up till 4am just trying to get comfortable to sleep. Today I felt like mentally I was going to break. My husband rubbed my back and told me you can do this Ali, you’re almost at the finish line, but all I wanted to do was scream.

I then had a friend call me up to video chat tonight and 10 seconds in she asked how I was feeling. Suddenly I felt like everything I was holding onto today was about to burst </3 I held back my emotions and we had a nice conversation and for that moment I forgot about this hard day, this hard 8 days. I’m so ever thankful for friends like her. I didn’t know how much I even needed to be asked that question.

I’m telling you now ladies, if you have a fellow Female friend who you think may be having a hard time reach out. You just don’t know how that one phone call or text could help her. Illness or not let’s face it, sometimes we just need another woman to talk to besides your spouse or partner.

Being a Mom can get damn hard and being a Mom with a #chronicillness and trying to stay positive for your child and family is mentally a challenge. During this strange time of being indoors 24/7 my daughter has now seen what I was able to hide from her while she was at school. That’s been a hard realization for me. Homeschooling has been maybe 2-3 days a week for us. Which as a Mom who wants a good education for her child I just feel like I’m failing her. The guilt is beyond on so many levels. Tonight before she fell asleep I asked her how she’s handling all this quarantine stuff. How she’s been feeling about seeing Mama in bed so much, if she gets sad and she said, definitely sometimes like today. I told her it’s okay to be angry and sad because I get angry and sad too, but there will be better days ahead. While her answer is maybe not what I wanted to hear, it’s reality. Of course like any Mother I want to protect her from all of it. I want to be the Mom she deserves.

What I’m realizing through this is I need to cut myself a break. I’m not traumatizing my child for life and I’m doing the best that I can for right now. It’s okay for me to cry alone in my bedroom if I need it and to feel vulnerable to my loved ones.

 So if you’re that Mom reading this post, you don’t have to be perfect, your kids love you no matter what. You don’t always have to be so strong for your partner, they love you just the same. In fact I’m giving you permission! Go ahead, lock yourself in that bathroom and cry it out if you need too. Cut yourself a break because you are doing the best that you can with what you’ve been given. You are human, you are wonderful, you are brave ♥️♥️♥️

Connect with Alison — Lyme Warrior & Mama. Lending Support to Moms, Kids, to those pregnant with Lyme ♥️ Support Group Leader of Lymie Moms Unite & Greater Philadelphia Area Lymie Moms.

Click here for Lymie Moms Unite Facebook private group.

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

Nope—never had a bullseye rash! I have been feeling bad for since I can remember… Until I got married and my husband pointed out it wasn’t “normal”… Was in and out of hospitals for YEARS, saw countless doctors and NOTHING. 

Then my youngest daughter started having “issues” with her articulations and we looked into that also with no success (EVERYTHING came back negative) and my heart told me that the “something wrong” was the same as I. 

I fought like a lioness to get help for her when she became disabled and couldn’t walk anymore 🙁 Eventually friends suggested Lyme… Looked into it.. And tested positive (both) to Lyme and I to Babesia as well.

 Three months into treatment and physical therapy she walked again!!!! (she had been in therapy alone for almost 5 months and it hadn’t helped). To this day she is doing great… We take it on a day to day basis 🙂

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

Where it all started

It started when I was 10 years old. Maybe I was 8, the verdict is still out and will probably never be fully confirmed. Every summer, my family goes up to a cabin on a lake in Wisconsin (the pic on my first blog post is one of the prettiest sunsets I’ve ever seen there, so much beauty!). This little town in Wisconsin is my happiest place and I feel so safe there surrounded by my amazing (and huge) family. 

One hot July morning, I was walking up our enormously long driveway with my dad, surrounded by the quiet trees, when I felt a small bump behind my ear. I asked my dad to look at- I thought I must have grown a new freckle or a lady bug or something. He looked at it and without saying a word, my dad picked me up by the shoulders and ran us into the cabin. He grabbed tweezers, naively plucked the bump off, and showed it to me. I saw a little black dot with legs, no bigger than a popcorn kernel. Small but might, a tick. And in that moment, we celebrated because the head came out with the rest of the body, which we thought was great! It meant the head wouldn’t be floating around my body or swimming in my bloodstream?? LOL. We had no idea.

Not knowing much about ticks, we flushed it down the toilet and went on with our day. That was the start of it. A week later, I had a 104 fever for 5 days, the flu if you will. I was SICK. So sick. I remember it all vividly but it was such a blur at the same time. People coming and going to check in, me hearing their voices but not being able to move a single muscle. This was my first symptom of Lyme Disease. At the time, we didn’t connect it to my tick bite at all. We were truly clueless. Today, tears well up in my eyes as I write this because I have so much empathy and love for that little girl who had no idea just how much that tiny insect would change her life forever. I have learned SO much through this entire journey. I want to jump right into how I’m currently doing because I’ve come such a long way, but that wouldn’t honor the rollercoaster ride I’ve been on to get here. So this was the beginning. Everyone has to start somewhere! And this was my somewhere.

My chronic lyme disease diagnosis

I found out that I had Lyme disease in January 2019. I wanted to share that story with all of you in hopes that it helps at least one person feel less alone in their own journey. So here we go!

How I felt in my body is hard to explain because I truly thought that everyone felt the way I did. That’s just what I thought the human experience was- achy muscles, brain fog, complete and utter fatigue. That’s just life! I would wake up miserable and tell myself that everyone is dealing with this feeling. Everyone experiences this uncomfortable sensation and I am being a baby about it. How could life possibly be worth living if I felt this miserable all the time. I know that sounds dark, but it is a thought that I frequently had. I went to therapy (which I love and highly recommend for everyone), had a yoga practice, journaled, and ate healthy foods… I was doing all the things and I was still miserable. 

One of my favorite podcasts that I still listen to today is called Soul of Fire by Jordan Younger of @thebalancedblonde. I love how Jordan is so connected to her higher self and how eager she is to constantly evolve into the best version of herself. She also has Lyme Disease. In one episode on her podcast, she spilled all the details about how she felt previous to being diagnosed with Lyme and I could hardly believe what I was hearing. It was like she was in my body. Everything I felt for so long but struggled to explain, was being explained right before me. I couldn’t believe how much I resonated with everything she was saying. My cousin was diagnosed with Lyme 10-15 years prior, so I had heard of it, but never even considered it to be something that I was living with. 

The next day, I called a doctor’s office and scheduled a routine check up. The only available time was 3 months away. Not ideal but oh well. A few days before the appointment, I was out for a walk in our neighborhood when the doctor office called me to tell me that the doctor was actually out of town and there were no other doctors available, so my appointment was canceled. I was shocked, confused, and so upset. I had a full blown meltdown right there on the sidewalk. I was crying, couldn’t breath, and felt hopeless. It was totally an over reaction, but that appointment was supposed to help me figure out what was wrong with me and it was just canceled. I called my husband SOBBING. He could barely understand what I was trying to tell him because I was crying so hard. He helped me breath, calm down, and regain my composure. He encouraged me to call them back to see if there were other options. He said, “This reaction you are having right now is exactly the reason why you need to call them back, Lauren. A canceled doctor’s appointment typically isn’t a huge deal, but right now it is to you and we need to figure out what is going on.” So I called them back and I set up an appointment with an RN. 

A few days later, I was sitting in the doctor’s office. I explained my medical history and she said we could do some routine blood tests to see if anything stood out. I also asked for a Lyme Disease test, which she said was unnecessary. I asked again, knowing that if there was ever a time to advocate for myself, the time was now. She took my blood, sent them off to the labs, and I went home to wait. Three days later I got a call from the doctor office with my results. Before she even told me what they were, I knew they were going to be positive for Lyme. I’m not sure why or how, but I had a deep knowing. And spoiler alert, the results were positive. She told me it could be a false positive and the results were already on their way to the second round of testing called the Western Blot Test. A week later those results came back positive, also. 

Finally having an answer was such a weird feeling. I was not surprised at all when she told me I had Lyme Disease. When I called my husband to tell him the news, he was just as unsurprised as me. I mean, the results sucked and it was really unfortunate, but we were both so thankful for an answer. My symptoms were not in my head, I was not crazy, and I felt so much validation. To anyone who is going through something, unsure of what “it” is, I SEE YOU. Keep searching, keep talking to your doctors, keep advocating for yourself. Your health is the most precious gift of all. If you ever need someone to practice an advocation conversation with, to vent to, or just talk things through with, please know that I am here. I love you! Thank you for allowing me to share my journey! 

I am so excited to share everything I’ve learned and everything I continue to learn daily. I have so much more that I want to share with you. Remember to sign up for my newsletter so you are the first to know when a new post goes up! Love to you all. Talk soon! 🙂

xx, 

Lauren 

Click here to follow Lauren’s Journey.