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

My name is Tiana, I am 25 years old and I live in Belgium (Europe).
In the late summer of 2019 I became very ill. I kept losing weight without knowing why.
I had severe muscle weakness and was always super tired, I slept so much but the tiredness didn’t go away.

I went to several doctors and hospitals and nobody knew what was going on.
They misdiagnosed me with many different things like IBD, Crohn’s disease, Fibromyalgia, Chronic Fatigue Syndrome, MS, ME, even cancer, mental health issues and so on.
They even said I made it all up and it was in my head.

I knew something was very wrong with me, it was scary and frustrating not knowing what to do or where to go.
Years have passed and my health kept getting worse, until I had to quit my job and slept for more than 16 hours a day. Some periods I didn’t get out of bed at all.
Every single part of my body is affected—from my muscles, joints, stomach, to my heart and even my brain. I can’t function anymore.

In 2020 I tested positive several times for Lyme disease, but not a single doctor took it seriously and they dismissed my symptoms.
I vaguely remembered having a weird rash on my forearm, I scrolled through my pictures on my phone and came across the bullseye rash, dated May 2019.
I did see my family doctor for this at the time, but he said it was only an allergic reaction to a mosquito bite. Little did we know… I didn’t recall seeing a tick.
I saw over 20 doctors, in 5 different hospitals, but nobody believed in Lyme disease, even with my picture of the rash and my positive test results. I was desperate as I kept getting sicker and sicker. I felt really lonely in this experience. Even my family doubted my symptoms; if so many doctors say nothing is wrong and your labs are normal, then why should something be wrong? Aren’t you just stressed? Maybe you should see a Psychiatrist? I did not know what to do, what to say, I was so sad that nobody believed me, or took me seriously.

It was only in December 2021 that I found my way to an ILADS specialist. He ran multiple tests and in March 2022 I was finally diagnosed with Chronic Lyme disease, as well as Epstein Barr virus, Babesia and Tularemia.
I finally know that it’s not in my head and last week I started my treatment. The doctor is hopeful, in terms of Lyme disease, 3 years is ‘quick’ he said, and it is possible that I can get my health back the way I did before I got bitten. So I cross my fingers and hope for the best!

Pink butterfly

© Illustration by Life in Lyme Light.

How has Lyme disease affected your life?

How it All Started…

I was working the grand opening for a brand new gym that had opened at the time, which was my home of work for several years. I was a fitness trainer working at the time. (I’ve been a personal fitness trainer and group ex. instructor for over 14 years now) I was always energetic, full of energy, and just extremely overall absolutely in love with what I did. (Helping people look good, feel great, and achieve their personal goals of weight loss) Weight loss was my specialty, because I always wanted to help others the same way I helped myself. (I grew up in my younger days overweight and completely out of shape) But that’s a whole other story we’ll save for another time. Anyways…Due to the fact that it was a brand new gym with many construction workers onsite all the time it was very common for them to be constantly bringing in insects such as ticks and spiders. I think you can see where I’m going with this. Yep you guessed it, I got bit at the new gym facility, which at the time was my work place. I wish I had some super cool adventurous story for you guys, like I was hiking in the rocky mountains but I don’t. It was just an unfortunate situation and I did not receive the proper treatment on time. Therefore my situation became chronic.

The Day of the Bite and My Plan of Action Immediately…. (May 30th, 2014)

After itching and itching profusely at my right leg, hours later which I had assumed at the time was just a simple mosquito bite, I lifted up my pant leg and saw a huge rash with a big red ring around (the standard Lyme Disease bullseye rash) with tinges of black and blue with purple hues and LOTS of redness. I remember thinking, “eh whatever I’m sure this is just a bad bug bite. I’ll get proper treatment and be fine, right??” Nope wrong… After my entire family insisted that I seek medical attention (because it looked that bad) I finally went to the nearest Immediate Care. It was a Friday night and I didn’t really have a choice. All other Doctors were gone for the day already. 

My Diagnosis for That Day of the Bite…

I was then told that my bite was indeed infected by a poisonous spider bite (the one and only brown recluse). Lyme Disease was not brought up or mentioned at all, even though I had the standard signature rash for it. They treated me with a topical antibiotic gel and an oral antibiotic, Batrim for 10 days (which was a nightmare in itself). So where am I going with this? The standard antibiotic treatment for Lyme is Doxycycline. Studies show that when given the proper treatment with the proper antibiotics within 72 hours of getting bit, this horrible disease will in fact NOT become chronic or officially enter the bloodstream permanently. So like I said, just a very unfortunate situation. And which I’m still working on truly accepting and it’s years later. What they were too quick to assume is that because it wasn’t a tick bite and it was a spider bite, perhaps they didn’t think about it or were just completely unaware. Studies show that you can get infected with Lyme by any insect that carries the Lyme bacteria. (Which we will definitely dive deeper into later).

Let’s move on shall we. So from there, to be honest I didn’t know any better at the time. I didn’t know what Lyme disease was, I didn’t know about the standard rash, and I had no clue about any type of treatments for bug bites. I mean why would I? So I did what anyone would do. I followed the doctor’s orders. I took the Bactrim and have never been sicker from an antibiotic before in my life. It consisted of complete bed rest with zero energy and MAJOR fatigue with other flu-like symptoms. It was absolutely terrible. But I finished all 10 days like a good girl, thinking that it would all be over soon. I did what I was told so I’ll be better in no time! Right?? Nope again very wrong actually. I had no idea that this was only the beginning of a living nightmare. It had only just begun.

When All the Symptoms Started…

Within time my body slowly started developing more and more symptoms, and eventually every major body system felt like it was being attacked.

I remember running outside, conditioning for the 15k hot chocolate run at the time, or trying I should say, and my body just physically wouldn’t go, that’s the only way I know how to describe it. I was always used to being a long distance runner and athlete. I was a trainer, I ran half marathons for fun. I worked out every day for 1-2 hours at a high intensity, no problem at all. That’s when I knew something was significantly wrong. When I couldn’t do it. I had all the drive and motivation it took, but my body just wouldn’t physically work any more. I told my mom I don’t know what’s wrong with me, but ever since I got bit by that damn bug I haven’t felt the same…

Touch of Health with Dr. Zishan Alam…

That’s when all the doctor’s appointments and blood work labs started. I was on a mission to try my best to figure out what was wrong with me…I was recommended by a good friend to go see Dr. Alam, an Integrative Homeopathic DO who is absolutely brilliant and whom I still get treated by and see every 3-4 months to monitor the core of my overall wellbeing including; thyroid, hormone, and adrenal issues. That’s when I then received my first diagnosis with Hypothyroidism and adrenal issues. I had no idea where these issues suddenly came from. It doesn’t run in my family and this was never a problem for me. So where was it coming from?? At the time, I had no clue. But now I can say after years of research and being in the know I can tell you!

What Lyme First Attacked in My Body…

The first thing that Lyme usually attacks is the endocrine system. Which in lack of better words, just plain sucks since it controls literally everything in your body. So you see, Lyme disease put me into Hypothyroidism. That’s the first major system it attacked, for me anyways. After being put on thyroid medication, supplements for my adrenals, and other helpful vitamins at the time, it was a small temporary fix just in time to allow my body to do my hot chocolate 15k run. I was so happy! I thought I was fixed! I thought we had solved the problem…The reality? It was only a needle in a haystack being taken care of. And I had no idea. I also had no idea that that would be my last long distance run (for now anyways).

All Major Symptoms…

Within time my body slowly started suffering from more and more symptoms, and every other major body system felt like it was being attacked. Starting with major fatigue, muscle and joint pain, which then eventually went into many neurological symptoms—starting with intense vertigo, dizziness, lightheadedness, muscle spasms, numbness and tingling in the hands and feet, insomnia, anxiety, panic attacks, severe weakness in the legs, fire feeling sensations in the entire body (nerve pain), brain fog and confusion, ear issues like tinnitus, intense pressure in the ears and head (that was the worst for me, the severe head pressure), and much more. Vision problems including; floaters, sensitivity to light, etc. I thought I was dying. No joke. 

After realizing it was a bit more than thyroid issues, my mission got longer and longer with lots of frustration, blood, sweat, and tears, not to mention lots of pain and tons of discomfort filled with every kind of emotion you can possibly think of. But to sum it all up I was completely terrified. The most difficult part was trying to get a diagnosis. It was Doctor after Doctor, specialist after specialist, numerous extensive tests, blood work labs, allergy testing, MRIs, CT scans, ultrasounds, GI procedures, Pulmonary testing, Neuro testing, countless ER visits… you name it. No one could figure out what was wrong with me. I felt like I was living in one of those dreams where you’re screaming at the top of your lungs, begging for help, and people are in the room right next to you but NO ONE IS LISTENING! It was absolutely earth shattering. I think the worst part besides all the pain, was that at one point for a split second the doctors even started to convince you and your family that you’re crazy. That you’re fine. Nothing is wrong with you. (Mainly because they have no idea and can’t figure it out) When in fact no one knows your body the way you do!!! No one!!! I knew for a fact that something was significantly wrong when my legs had an extreme weakness in them and were losing feeling. As in I couldn’t walk comfortably, or walk up and down stairs. They felt as if they just didn’t know how to work anymore. It was the scariest feeling in my entire life. After hearing my poor mother’s voice day after day with extreme worry and concern she inspired me to push through, and I started doing therapeutic exercises on my own at the gym. (THANKS MOM! What would I do without you? You ALWAYS remind me of my inner strength when I forget about it and most of all, when I need it the most, I LOVE YOU!)… I would start with like 10 lb. leg extensions and work my way up. Before I knew it I was getting stronger and stronger with every workout. The number one thing you need when fighting an illness, and I mean the most important thing ever is, determination. If you’re fighting for your health, don’t ever ever give up!!! Dig deep from that inner voice inside and pull that shit right out of you! Lyme is something that can easily take over your entire soul if you let it. Just dig deep for that inner strength we all have, and use it.

FINALLY Getting the Diagnosis…

Anyways, 13 specialists later and going on a year with symptoms, (March 2015) I had to ask my neurologist, “PLEASE please just test me for lyme,” I begged. I have every single symptom. Just please test me for it. She said, “ok I’ll test you for lyme if that’s what you really want but I don’t think you have it.” She ran the labs and EUREKA we’ve FINALLY got a diagnosis! I was so happy that day because I finally got an answer. I had an explanation for this crazy nightmare I was living!!! Now let’s start the treatment! Let’s get better!! Let’s get the party started! Oh it was a party alright but not one anyone would want to attend that’s for sure…

Finding a LLMD to Get Proper Treatment…

First things first, when getting treatment with Lyme, you need a LLMD (Lyme literate Doctor). That’s when we found Dr. Keith Berndtson. A LLMD who ran lots and lots of labs, followed by lots and lots of supplements, holistic care, and of course a different series of antibiotic plans. In which every one was more unbearable than the next. 

Everything from that point on was trial and error. Just like many other things, everybody’s body has its own special unique reaction to something different. What works for you may not work for me and vice versa. So we started with Tinidazole and Ceftin. Followed by a few more rounds of other antibiotics (Clarithromycin) that continued to make me way worse than better. Which I was warned about, as they called it the, “Herxheimer Reaction”. The pathogens come out of their dormant stage and out of the cells and into the body, basically causing a hurricane-like mess in the entire body. It is also known that herxing causes a “die off” where the Lyme is fighting back, releasing toxins and causing inflammation in the body, therefore causing all the unbearable symptoms, causing you to get much worse before getting much better. I couldn’t stand the suffering and had an extremely difficult time with this process and to be honest, wasn’t entirely sure I fully believed in this process. Luckily we found an incredible open-minded Internal medicine; Dr. Jack Zoldan, located in the city. He had a little bit of a different belief and approach, as far as the whole getting better process. He said, “I don’t believe in the herxing method. If something is making you worse, I just don’t believe it’s working for you.” To be honest, I kind of agreed. No matter how many places I read about it. That’s when we decided to change paths and get started on Doxycycline. Which I like to personally call the holy grail of antibiotics, as far as treatment for Lyme goes. And an antifungal Nystatin, which also seemed to help. Now this is just my personal story. That’s what worked for me. That doesn’t mean it will work for everyone. Lyme is a very complex disease to have. There are different infections caused by different bacteria, parasites, fungus, viruses etc., not to mention co-infections. I mean it’s A LOT!!! And every person infected has their own unique case. Which is why it’s so hard to treat.

After trying multiple antibiotics, Doxy clearly worked best for me. All together I cycled on/off for about a year straight until my body and most of all my poor digestive system just couldn’t take anymore. My GI is still a work-in-progress healing from it all, but we’ll get into that later and my recent diagnosis with SIBO (small intestinal bacterial overgrowth) along with the whole treatment plan coming soon, which I’m not looking forward to, but it’s another step in the right direction towards getting my health back, so I’m a happy girl! Like I said I have a lot to share. 

January 13th, 2017 Hives…

An extremely discomforting situation of very painful hives started in 2017. Thankfully that was my first and last episode! That’s what brought me to see Dr. Lisa Sullivan, a very thorough and intelligent Allergist and Immunologist. She ran multiple tests and we couldn’t find out where exactly these terrible discomforting hives were coming from. To clear it all up included 3 ER visits, IV antihistamines, about 3-4 EPI-pens, and lots of Zyrtec. It was a living nightmare which consisted of and felt like my entire body was literally on fire mixed with extreme and unbearable itching. It was terrible. The result? I never really found out exactly where they came from. But Dr. Alam (as he pretty much always has a definitive answer or theory for anything I throw his way) stated, “The large amount of caffeine I was taking (pre-workout at the time), crashed my adrenals which led to crashing my immune system, making my histamine receptors not willing to work properly.” After researching more and more, it was confirmed of course, as always, he was right. Needless to say, I obviously don’t consume high levels of caffeine! I like to enjoy a nice cup of green tea from time to time, but that’s about it. 

As time went on after all the antibiotic treatments and supplementation, I did get better. I got a lot better and I was extremely grateful for it all! But I was still suffering. I was still struggling with my new lifestyle that I had no idea how to accept. I thought if I felt better and came this far, I want to keep going. There has to be something more that I can do to get my life back to my 100% that it used to be, if not somewhat close. 

Protocols at Raden Wellness Center…

That’s when I found Raden Wellness Center. I was being treated by the brilliant Dr. Donald Raden and received even more complex answers about everything going on inside my body. I learned a lot between new blood work labs such as; the Armin test, biotoxins in my body and the biotoxin pathway, and much more. Again something I can’t wait to dive deeper in with you all later. But for now I can tell you that Dr. Raden’s plan of action for getting rid of all the biotoxins was BINDERS! This was including; Chlorella, PC oil, and Tox-ease Bind. None of which I had any bad side effects from and just continued to get better from flushing all the biotoxins out! My Biotoxin units through blood work have dropped significantly and I’m currently doing MUCH BETTER in that department. So, THANK YOU Dr. Raden!! From there we had discussed more treatment plans. Unfortunately all treatments having to do with Lyme are not covered by health insurances. Which makes everything even more difficult because it is very expensive. Out of my many options including; Ozone therapy, IV treatments, Silver water, Herbal support and even more supplementation, I decided to go with Peptide Therapy Daily Injection shots that I gave myself every single day. 

Later on we also decided to start IV treatments including Vitamin C drip, Glutathione push, PC, ALA, and a Myers’ Cocktail or Immune Push (all in which I alter back and forth with, and occasionally still get if I’m feeling in the need for a little tune up). I started this when COVID hit us and we wanted to just basically keep my immune system up and running nicely. Which it did! As Dr. Raden says, “Worst case scenario for Lyme patients is an immune system that isn’t working up to speed. So it’s very important that we always keep it nice and strong.” I LOVE the IV treatments for that when necessary. I always walk out of the IV center feeling like a million bucks!! I always tell the nurses there that this is my idea of a spa. Lol It really is though. Nothing beats feeling great! And the IV treatments make me feel great! But the proper amount of good sleep, exercise, a healthy diet, reducing stress and supplementation also play a very big role in keeping your immune system strong and feeling great as well. But that’s no secret. I’m sure you already know that. 

My Experience with Peptide Therapy Injection Shots (Thymosin Alpha 1)…

Just like mostly every treatment with Lyme, once again I got a little worse before I got much better again. In the beginning side effects included; extreme anger for no reason, irritability, headaches, ocular migraines and over all anxiousness. After a while though, I started feeling like a million bucks. Okay maybe like a half a million bucks, Lol. With my immune system up and running much stronger from this amazing revolutionary peptide, I was sleeping like a baby, had way more energy, recovered from my workouts better, and was overall in a wonderful mood all the time because of how great I was feeling. Needless to say it was indeed working and doing its job. I continued to take Thymosin Alpha 1 for a little over a year, until I noticed it started working a little in reverse for me. Meaning less is more. I no longer needed that much of it, or at all it seemed. So I went from everyday, to every other day, to 3x a week, to 1x a week, and then I stopped. My face got a little puffy from it and I did gain weight, which tells me it was altering with my inflammation levels. Anytime you alter things with your immune system that will happen, I was told. 

For a while I was extremely confident I was almost at my 100% with Lyme in remission. But when extreme stressful life events started taking place in my life, everything seemed to reactivate. The thing is, we’re not just dealing with Lyme disease and its co-infections here (in my case). We’re also dealing with biotoxins, EBV a.k.a. Chronic Fatigue Syndrome, Hypothyroidism, high cortisol levels leading to adrenal fatigue, and hormonal imbalances. So it’s basically a domino effect of the body in constant fight or flight mode, which is never a good time. But with extreme self-care, daily routines, lots of supplementation, constant detoxing, occasional IV treatments, and ALWAYS staying on my A-game with diet, exercise, yoga, and meditation, it creates that healthy balance of homeostasis in the body. So basically I have to take very special care of myself to feel good. 

Healing with Whole Health Chicago…

Anyways, after my little peptide therapy journey was over I was highly recommended from friends and patients to go see Whole Health Chicago. I am currently still getting treated there and seeing Nurse Practitioner, Katie McManigal who is absolutely brilliant and I couldn’t feel more confident that I am in good hands. We are currently on a plan of action, which I am more than happy to share with you in the very near future. I will be receiving treatment for my latest diagnosis with SIBO soon, along with some more intense detoxing and a bit more Lyme treatment, while we soon bring this healing journey to an end. In her words, “Michelle, look at this year 2021, as being your year of healing”. We have quite a bit more to do but I’m so excited to be so close to the end of this crazy journey. I can’t wait to share all the details on all of that with you all. But in the meantime, I have been given some game changer supplement protocols that I would love to share! So stay tuned!

My Experience with Naltrexone…

She did prescribe me the medication Naltrexone. A medication that is supposed to be revolutionary for people with Lyme and other auto-immune diseases. Well it is actually and has been extremely successful in lots of people in these cases. But not me. I actually had an awful experience with it. It made me extremely emotional, angry, confused, and any other kind of negative emotion you can think of. With that being said, I stopped it. On my own. It’s that simple for me really. If something doesn’t make me feel good, I don’t take it. Like I said, you know your body better than anyone else. Listen to it when it speaks to you. Anyways I stopped the Naltrexone and was back to my old happy self again! ☺ (I’m pretty sure I only lasted a week of taking it.) Every single body is different, what works for you may not work for me and vice versa. 

We’re Getting There…

I feel like I’m getting closer and closer to the bright light at the end of the tunnel and even though I have some ways to go, I’m so happy I’m getting closer to feeling great again. Like any other immune-suppressing disease, I have my bad days and my good. But I do my best to let go of the bad and stay extremely grateful for the good! 

I have been wanting to share my story for a very very long time and I’m so happy I finally made the time to finally do it. I promised myself when I was at my worst, bedridden, and couldn’t tolerate anything more than laying down in a dark room with no lights, no TV, no sounds, just silence and extreme discomfort… that I would do my best to help anyone else who suffers from this unfortunate disease, that I would help them as much as I could and as much as I helped myself. I’m not a doctor, but I can share what worked for me, what didn’t, and all of the in between. Which is exactly what I wish I had back in the very beginning. I was looking for hope. I was looking for answers that seemed impossible to find at the time. Remember that you’re going to keep trying, and trying, and trying to reach your goals of getting your life back… and that very moment right when you wanna give up, that’s the exact moment you have to keep going, you have to keep pushing through and that’s when you finally start to succeed and get better. You will try things that won’t work for you. And you will try things that will! But please be patient and remember, that you will heal and you will get better! So I hope this inspires you in some way and helps you in another. I’m looking forward to sharing with you, all of my self-care and daily routines that help me live my everyday life on this crazy healing journey. So enjoy!! Lots of Love and Light to you ALL!!! 

What inspires you?

My Support Team…

It’s one thing to have your whole life change and get completely turned upside down. But to be incredibly blessed with such an unbelievable support team a.k.a. my incredible family, I honestly don’t know what I’d do without them and I have no idea how I would have handled any of this without their love and support. From my mother and sister spending countless sleepless nights with me trying to just make me somewhat comfortable, to both of my parents rushing me to the ER with extremely terrifying experiences, to my father driving me to endless Doctor’s appointments when I wasn’t well enough to drive and never giving up on finding good Lyme Doctors to get me treated when I almost died, and to my big brother just simply always being there for me in every way he can be. And so much more!! I mean I couldn’t be more blessed and I am SO unbelievably GRATEFUL for every single one of them, they are all my rocks. And of course my best friend, Izabela for always being there! I appreciate you so much! You don’t think much about all the pain and suffering that you’ve been through when you go through something like this. You do however think about who was there for you, how far you’ve come, and how it molded you into this extremely strong person that you had no idea even existed. 

If you have suffered from Lyme, or any type of illness, I really hope you have the abundance amount of love, support, and compassion that I did and still have. It makes everything so much more bearable. That is for sure! 

The Silver Lining…

There is always a reason we are faced with intense life altering battles in our lives. We never get it in the moment, but somehow wayyyy later through it all, we sort of kinda start to understand and see the bright side of things, or some of the reasoning behind it all I should say. For example, getting Lyme led me to Yoga and Yoga led me to my healthcare work that I’m in now. In which I’m extremely passionate and grateful for both. If you’re wondering how, allow me to explain. I would have never and I mean never been brave enough, let alone confident enough, to think I was ever capable of teaching yoga before I got sick. I always loved it, but I always looked at it as a very complex thing to teach. And it can be. It definitely takes confidence, sharpness of the mind, creativity, talent, and so much more. But somehow going through everything I went through, made me fearless. It made me resilient. It made me feel like I could do anything I put my mind to…

When I was in the middle of hitting rock bottom and I found out I was in fact NOT dying, Lol (because I thought I was), my father said to me, “Now that you can see that you have the power to make yourself feel worse, do you see that you have the power to make yourself better?” Was he right? Absolutely! The power of the mind and your thoughts are extremely powerful. Your body listens to EVERYTHING that your mind says. For example, if I keep saying, “Omg omg I feel so sick. I feel terrible, I’m falling apart, I think I’m dying,” I will in fact continue to get much worse. Now if I tell myself constantly, “I am healing, I am doing much better,” etc. I will only continue to heal and get better. This is not an opinion. This is a fact. Now can my positive thoughts heal me completely probably not, Lol although that would be nice. But a positive mindset sure does help, A LOT!!! When you’re at your lowest of lows though, it makes it a bit tougher, luckily I had someone to remind me…THANKS DADDY I LOVE YOU! 

Anyways, I couldn’t be more grateful for my yoga journey!! I wasn’t sure at the time if I was even capable or strong enough to go through an entire teacher training. I was still healing and trying to get myself better at the time. But I knew I had to at least try. I didn’t know much about it at the time to be honest. All I knew is that everytime I walked out of a class, I felt better and stronger physically, spiritually, and emotionally. Every. Single. Time. I felt my body and mind heal with every class. I fell in love. I told myself in the beginning I was only going to do the teacher training for myself and not to become an actual teacher. But once I started, I had no idea something so great could make me feel so alive, yet so grounded all at the same time. My soul was on fire and there’s no other way to put it. I found one of my callings at the time and it was all because I got sick. So you see, sometimes you have to fall before you fly. 

I’ve met some amazing people in my CPY (Corepower Yoga) teacher training. Every single person there was just an awesome human filled with such great energy. To be honest, I’ve never met that many amazing people in my life. Our mentors and teachers (Stephanie Azzaretto-Sanchez, you’re forever my favorite!), my fellow students, and everyone else in between. One of whom led me to my healthcare work now. I get to help people everyday. It doesn’t get much better than that. I have amazing bosses, wonderful co-workers, and incredible patients, ALL of whom I love and adore deeply. 

As you can see, Lyme brought me on a very interesting path in which I love with all of my heart. And I couldn’t be more grateful for this very difficult, yet completely satisfying journey that God and the universe had planned for me. Do I wish that this all never happened? Of course all the time. But I didn’t exactly get to pick. I didn’t ask for any of it. It just happened. And like I said before, I’m still working on accepting it all and embracing the wonderful person I have become because of it, and soaked in all the rewards that came after and stayed extremely thankful for getting through it all. We don’t get it at the time of the suffering (why would we), but somehow wayyy later, it all starts to make sense. It molds us into the person we are meant to be. Someone so much better, so much stronger than we ever were before.

Read more about Michelle’s journey by following her blog here.

Yellow and pink butterfly drawing.

© Illustration by Life in Lyme Light.

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

This will be my only post for Lyme Disease Awareness month. Noah is my why. He has nay vague memories of a well Mom. He has memories that I wish I could erase. No child should ever have to witness the level of sickness he has been witness to over the last decade. Noah will be 14 next month. He knows more about Late Stage Lyme Disease and the associated symptoms than most doctors in the U.S. The sad reality is that over the last 22 years, nothing has changed in the medical community or with other agencies. I believe that more people are aware of the illness, but the people who can make real change for us, do not care. Even if I woke tomorrow to learn that health insurance companies would pay for me to see a qualified health practitioner and would pay for prescribed treatments, I do not believe the practitioners would agree. Reimbursement from health insurance versus the enormous amount of money the practitioner receives from each desperate patient? We all know the answer.

Butterfly with burnt orange center, fading out to forest green edges of the wings.

© Illustration by Life in Lyme Light.

How has your invisible illness affected your life? What inspires you?

In 2010, while living in Northern Virginia/ in the D.C. metro area, I contracted Rocky Mountain Spotted Fever and it forever changed me.

It was actually in November 2009 (dead of winter!) when I first started noticing odd symptoms that weren’t like any other I had experienced.

I had always been quite the medical misfit and I’ve had multiple brushes with death because of health issues (I’ve had a stroke, I had a pulmonary embolism after flying to Germany and almost died in a London ER, and my body’s ability to process food decided to quit!) – so needless to say – adding this disease to the list was no shocker lol – but of course at the time, I had no idea what else was now going wrong with me.

The most common symptoms for people who catch RMSF are the obvious ones – a “rash” and a “fever”… I had neither.

Instead – my body just started to deteriorate.

I got extremely tired constantly. Not just tired because I needed to sleep or couldn’t sleep, but almost lifeless as if I could do nothing BUT sleep.

Every joint and bone in my body started to ache. It started to hurt just to walk. We lived in a 3 story house – so to go up and down the stairs became a challenge. To even get out of bed, my husband had to wrap his arms around my body and help lift me out of bed as if I was disabled. I had NO clue what was happening to me.

I had gone to my doctor multiple times as these symptoms got worse and worse. He ran every test he could think of – assuming it was “pre-menopause” (after all I had just turned 40 – so wouldn’t be too uncommon) – but every test came back negative.

I was an extremely active mom of 4… I took Martial art classes for multiple years, kickboxing, jujitsu, aikido – you name it, I was in it! So for me to go from nonstop, ninja moving mom – to what felt like a 90 year old on her death bed – was extremely frightening.

It wasn’t until the middle of May 2010 (following year) that several kids had gone into my doctor’s office to get checked for Lyme disease after going on a camping trip and several came back with tick bites and were getting sick.

My doctor immediately called me and said “OMG I might know what’s wrong with you! Get in now so we can check you!”

He immediately did a full “tick panel” blood test to make sure he could rule out any of those diseases… but was SHOCKED when he said it came back positive for Rocky Mountain Spotted Fever.

He called me and said “You need to get back to my office NOW so we can start treatment IMMEDIATELY!” He said he ran the blood test 3x to confirm it was RMSF because he had NOT seen a positive case there in NoVA in almost 30 years!!!!

And to the fact that I didn’t get the rash to boot!

ON top of that – RMSF comes from a DOG tick… AND WE DIDN’T EVEN OWN A DOG at the time!!!! So I had NO idea I had even been bit by a tick – let alone knew what RMSF even was!! (To be honest I thought it was a John Denver song hahahaha)

I got to the doctors office, he and his nurse were in a full blown panic when I came in.  Not only did they have my prescription ready for me – they actually had me take the pills while I was standing in their office.

My doctor said he was SHOCKED that I was still even functional because RMSF is known for shutting down your organs if not treated IMMEDIATELY! And of course because of that – it is lethal.

By this time, I had had RMSF for about 7 months – but in most normal cases, people can have organ failure within a few weeks!! I was very lucky and I feel like God spared my life – again.

It took several doses and many weeks of the medication for the blood tests to come back clear.  But by the end of July 2010 – I was good! ALL CLEAR!

My doctor said RMSF stays in your system for life unfortunately. So I have to have my blood checked every couple of years, unless I’ve come into contact again with any ticks and want to get re-checked.

I still feel like at times – I carry with me symptoms from the disease that have long done damage to my body that are now unrepairable. (I have extreme memory failures at times and my body aches very easily now :/ ). But I just do everything I can to stay healthy.

Now living in Oklahoma in the country – it worries me constantly because ticks are really bad here and I’ve been bitten by many, too many times than I’d like. Most of the time, I didn’t even realize these evil things had made it onto my clothes, let alone under them and onto my skin! UGH.

So now, I warn everyone I can.

I try to educate as many friends, family and now even strangers on TikTok with this message.

With the comments I saw posted on that first TikTok video – it’s no wonder to me that there are probably MANY young kids out there with Lyme Disease or even RMSF and don’t even know it because their symptoms aren’t “common” ones – so they don’t go and get checked for it.

It’s very frightening to me and I hope many take it more seriously now.

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

Hi. My name is Ahmad Omar. I’m a holistic health coach and podcast host.

I faced many different forms of adversity in my life. The biggest was my struggle with chronic Lyme disease and Autoimmunity.

At that time, five years ago, I was going through an extreme period of adversity in my life. I had every single life and health issue in the book—Anxiety, panic attacks, PTSD, depression, Lyme disease, autoimmunity, divorce, debt you name it. The cost of surviving was extremely high, and I had to drop out of my university and quit my job.

I had to travel from Norway to Germany to get treatment for chronic Lyme disease. I didn’t take it there because it was costly. Instead, I focused on using a holistic approach to heal myself and prioritized my health.

Luckily, I started getting better, but I didn’t know where to start and why this has happened to me. I was confused and didn’t know where to begin again after this. I was overwhelmed. But I made a good decision. I wanted to learn everything about health and wellness to put back my health on track.

I listened to every podcast and invested in many books on topics like food and inflammation, gut microbiome, nutrition, mindset, personal development, spirituality, and fat loss.

I discovered that the key to healing comes from fixing a puzzle within the human body. (The Mind, The Body, The Spirit) that’s why I wanted to be a holistic health and wellness coach to help myself and help other people.

Then my podcast Healed By Nature was born to shed some light on how dietary and lifestyle changes can improve and heal many chronic illnesses out there.

I focused on building back my immune system and managed my stress to keep my inflammation levels down.

I was privileged to work with a holistic therapist that gave me an eye-opener about my gut health. It was a game-changer for me. While I was learning more, I noticed something that we don’t hear about a lot, and that is how important the digestive system is for health.

The gut microbiome regulates the immune system, nutrition absorption, hormones, metabolism, and how you feel! Yes, almost 95% of serotonin, the so-called anti-depressive hormone, or the happy hormone, is made in your gut. That shocked me, and I knew the key to mental/physical health depends on gut health and microbiome.

So I knew one thing: if I can improve my gut health and heal naturally, how great that can be? How many can I help? So I start building my gut with foods and herbs and start noticing some improvements, but natural healing takes time, and it’s a curvy progress. It’s not a magic pill or a quick fix. It’s a lifestyle change.

I started training and enrolled in a Muay Thai class, lost 45kg of body fat, passed qualification matches for bronze and silver in K1/Kickboxing, and became a health and wellness advocate.

I learned how to progress/heal and grow in life even while facing adversity, and if I can do it, everybody can. And then, I self-healed my chronic Lyme disease/Autoimmunity. gained back mental clarity, and crushed my fears.

I discovered my passion to coach and empower other people to claim their life and health back. I do that by creating free content on my podcast and I start doing coaching sessions to help others.

To sum it up, facing adversity can be very challenging, but the growth and the clarity that comes with it at the end of the day are fantastic.

Remember that becoming free, healthy, and abundant is our birthright.

We are made perfect. The body doesn’t attack itself. It’s trying to heal it from chronic infections, heavy metal toxicity, environmental toxins, leaky gut and chronic stress.

“All disease begins in the gut.” Hippocrates: the father of medicine, nearly 2500 years ago.

-Ahmad Omar

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.