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.