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Story 152

Color pencil sketch of a butterfly, with alternating blue and purple sections in the wings.
© Illustration by Life in Lyme Light.

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

This Lyme disease. It impairs my speech. I forget words. Attacks my Nervous system. Paralysis of my face…Brain fog. Severe migraines that last for days. Has caused Brain lesions. Chronic fatigue…(longest slept 19 hours) my body will just shutdown. Severe pain at times. Stress trigger…sickness trigger…tired trigger…I can have some symptoms that stay for weeks, days, hours, or even moments. It just appears 😳 it’s from any kind of bug. Blood transfusion…from mother to child. #lymediseaseawareness

Video Transcription:
It’s Saturday, April 27th. So I am having this whatever it is, where my right side is not functioning. My speech this morning has not been good, it’s a lot of stuttering today, having trouble saying words, and having a hard time trying to think of the words. I wanted to document this for when I see the doctors on Monday because I don’t how my speech will be Monday, so as you can see my face, my mouth is sometimes functioning correctly and not moving to the left side, and sometimes it’s not, it’s the weirdest thing. Okay, I’ll keep you posted throughout the day, because every minute, it changes. Bye!

Video Transcription:
Well today is April 28th, and as you can see my speech is good, my mouth is functioning. It’s been a good and a bad day, the speech was horrible this morning. Migraines—a lot of migraines most of the day on and off. I did get a lot of…I rested pretty good today. If I get enough sleep, it seems to help my speech. We’ll see how tomorrow goes, that’s it!

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Story 151

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

I just want to feel human again. I feel like a shell of the person I once was. It’s not just energy, or the lack thereof, but a loss of emotion. ~Journal entry 11/9/17

Lyme Disease Awareness Month

In honor of Lyme Disease Awareness Month, I will write a series of posts that share honest insights of my Lyme disease treatment. My hope is to offer enlightenment as to the true severity of this disease and its treatment. For the two months that I stumbled around the dark chasm of Samento and Banderol I felt alone, vulnerable and dissociated from the world. I hope by sharing these truths, others won’t feel so frightened of the scary things going on in their minds and their bodies. Remember, though you may feel alone in this, you’re not alone. Others have walked, or are still walking, a similar path. I hope you can find some peace in our shared experiences.

Entering the abyss

I didn’t fully realize on the morning of October 5, 2017, that I had taken my first steps into the dark chasm of Samento and Banderol. My journal entries from those two months serve as my memory. The reality of the sensory deprivation that surrounded me like a veil reveals itself in my entries from those lonely days. As I walked around like a stoned corpse, my mind was swallowed by illusion. For two months I floated, helplessly, in that sea of delusion.

On October 4, 2017, I took my first drops of Samento and Banderol. The day before my doctor had warned my husband to watch for brain herxing, such as cognitive issues and depression. However, it was hard for him to fully gauge my mind’s rapid slide into the chasm of these two seemingly innocuous herbal extracts:

October 5

~Irritability (noise), difficulty driving again, brain fog, chilled, shaky~

I ran to the grocery store today and nearly got into two car accidents along the all too familiar route. I felt completely out of it, like I was super stoned. The world around me felt like it was moving at hyper-speed while I was moving in slow motion. While I was pulling out of the grocery store I nearly collided with another car. I didn’t even see him there. I’m not sure I even looked before pulling out. It’s like I was the only person in the world and then suddenly I wasn’t. My mental dissociation is alarming. If I could feel scared about this development, I probably would be. I don’t think I should be driving.

October 10

~So tired yesterday, took 2 naps. Increased dose this a.m. to 3 drops, feel weird already. Left foot numbness, wobbly, disconnected from my body.~

It feels like my head isn’t attached to my body. I have very little control over my legs. They wobble around like they have a mind of their own, completely separate from the commands of my brain. Through it all, I feel surprisingly comfortable in my delirium.

October 13

~Increase to 4 drops. So far, feel a bit out of it. Hard to concentrate, dizzy, and of course tired. Feel nervous. Kind of difficult to walk. Feel jell-o-ie, out of breath. Pain in left rib/breast continues. Left foot weird still. Cut back to 3 drops tonight, 4 drops this a.m. really fucked me up.~

My husband was speaking to me as he cooked me breakfast this morning. I couldn’t concentrate on what he was saying. I’m certain he was speaking English, as that is the only language he speaks, but he could have been speaking Mandarin for all that I comprehended of his words. When it was my turn to talk I opened my mouth, but no words came out. I’m certain I had thoughts but I was unable to speak them. My mouth moved like a fish as it swims along, absorbing oxygen from the water, and my words were released and carried away with the carbon dioxide.

October 18

~Feel weird…woke up with wet clothes, night sweats. Hard to focus, to talk. Catching my breath while walking. Headache again. Chest pain.~

I have to take Ollie for a walk. After I attach his leash I have to remember to grab the string attached to my head so I can carry it along with us. I draw a smiley face on it for the sake of congeniality, as it floats and bounces about, above the rest of my body. I wish the dissociation would reach my body. At least then I would be less aware of the heat that pounds on my body like a sudden heart attack.

October 19

~Slept good. Feel lost this morning, like I’m stoned, forgetful. Tinnitus, achy, tired. Hot flashes, headache, pain behind left eye. Difficulty swallowing.~

I’ve just stood up from the comfort of my brown recliner. I search about the room, looking for clues as to why I decided to stand up. Did I hear something? Am I thirsty? Does Ollie need to go out again? Do I need to go pee…aaah, yes that’s it. I need to go to the bathroom. I wonder, if I hadn’t had the inclination to stand up, might I have wet myself? That would be embarrassing. I need to remember to get some more water before I sit back down. I am thirsty as well. Get water, you’re thirsty. Don’t forget water, you’re thirsty. Get water, you’re thirsty. Aaah, back in the comfort of my brown chair. Aw, shit. I forgot to get more water…

October 22

~My brain feels weird. I feel oddly numb yet super sensitive all at the same time. I feel like my mind is a rogue agent right now. And, through it all, I am almost oblivious to it. It’s all very strange. Will is gone hunting right now, left two days ago…and I don’t miss him! This is not because I don’t miss him, it’s because I don’t really realize he’s gone. It’s like I’m stuck in some bizarre alternative reality… and unaware I’m stuck in it. The saying “ignorance is bliss” has never held more reality for me than now.~

This journal entry has always been the most telling, and the most eerie, of my recollections. I remember feeling this sort of elation in my ignorance of what was going on around me. Mostly, I really was rather comfortable in my delirium. I’m not sure if I should have been scared by this or not. All I know is that after I finished with this disarming protocol I was able to speak again and remember words again. It didn’t all come back at once, but my brain was on its way out of dis-ease into a place of ease. After the dark chasm of Samento and Banderol, the fog that followed me everywhere gradually began to wane.

The shell of a human

“I feel like the shell of a human.” This phrase comes up in my journal over and over throughout my treatment. For the two months that I took Samento and Banderol I lived in a constant state of nothingness. I was an androgynous avatar of myself, swaying in blackness, waiting for someone to select me and breath awareness into my eyes.

In my book, the title of the chapter where I discuss my journey through the chasm of Samento and Banderol is Brain-Fucked. That is a crass but all too true description of how I felt at the time. My consciousness was altered in a way that I had never experienced before or since.

If you find yourself swimming in the Sea of Fog, reach out your hand and know that you’re not alone. You’ll find your way back to shore. And when you do, things will be so much clearer. The sun will shine brightly on your face again.

Follow this Lyme warrior’s blog; United By Lyme and purchase her memoir here.

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Story 150

How has Lyme disease affected your life?

My name is Stef, I’ve had Lyme disease for 7 years now, after a strange rash (that I thankfully photographed and now know is an EM rash) was misdiagnosed as ringworm in 2015. Over the years I kept getting sick, but the things were so disconnected.. debilitating days—long migraines with visual effects, tachycardia and heart palpitations, energy crashes and a thyroid attacking itself—were the first symptoms that popped up down the line in 2016, my first year of university. My doctor dealt with each issue separately and it was all unknown as to the cause. Then in my second year, my body just betrayed me, with debilitating fatigue and chronic pain, periods gone completely and neurological bits and bobs like tremors, brain fog and memory loss and eventually seizures. I just about finished my second year and just as I was starting my third year, I had a 2-hour seizure in Paddington station. I was diagnosed with M.E., Fibromyalgia, Non Epileptic Attack Disorder and Functional Neurological Disorder. I had to fight with doctors who dismissed me and learned a lot about patient advocacy.

I had to move home to be cared for, as I could no longer look after myself, which broke my heart. Piecing the symptoms together with my medical history, I came across the rash picture which, along with my symptoms was enough for a GP to consider Lyme Disease and start me on a course of Doxycycline immediately. The relief was immense. All seemed well until I would finish the course and everything would start up again. My pain was hefty and my seizures were daily. My GP kept me on Doxycycline for longer and longer periods, but I would always relapse. We had no idea what to do, infectious disease doctors said I should be cured, but I kept going in circles.

Lyme Disease UK organized a talk with Dr. Jemsek in London, which I attended with my mum and uncle, he was at the top of my list of international specialists treating people like me. I asked about my case and took as many notes of recommendations as I could to my GP. We started me on some stabilization medications for my nervous system and I started fundraising to see Dr. Jemsek in America for specialist treatment.

I’ve been in treatment for 3 years now and am grateful for my progress everyday. I can read again! When you lose the ability to read, as someone who loves learning, it’s devastating so I’m most grateful for that. I haven’t had a seizure in 2 years! My pain is under control besides suspected Endometriosis (I’m on a waiting list for a specialist to investigate that), and my fatigue is better than it was by a long mile. I have a carer who helps me live a bit more independently, with the tolls of treatment and all the detoxing I have to do. I’ve learned a lot through the wider disability community online and have unlearned so much toxic internalized ableism. You have to grieve the loss of your old self and I’ve managed that really well, I just focus on who I am today. Every year I try to get involved with Lyme Disease Awareness online, but I’ve always been too sick to manage making a difference in my community in person (besides my fundraiser in 2019 which doubled as an awareness event). This year I’m finally able to do some things locally and help more people avoid having to go through what I’ve been through.

I believe in the power of education and activism, I believe in the power of mutual aid and I believe in the power of marginalized communities. Today I work on learning sociology, philosophy and getting back to my practice of textile design. I’m still in treatment and have some way to go, but I’ve come such a long way. I love going outdoors in nature in my power chair (mobility aids are freedom) and spending time with my partner. It’s been a hard few years but I enjoy what I can, when I can.

My advice is listen to your body and work with it, not against it. Not everything will work for everyone. If something a doctor suggests is harming you or not working for you, you are allowed to say so. Also keep notes of everything, even if it’s in the form of videos, just to look back on and see how far you’ve come, sometimes you need that reminder.

What inspires you?

the power of a collective.
mutual aid.
communities helping each other.
Not one quote in particular but I’m a fan of Bell Hooks, Noam Chomsky and Albert Camus to name a few who inspire me.

Hang in there, 
Stef xxxxxxx

If you can, please donate or share Stef’s GoFundMe here. to help them travel from the UK to Washington, DC for their next doctor’s appointment and raise funds for Lyme Disease UK.

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Story 149

© Quilt by ‘Belle’ of Seams Sew Me.

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

Seven years ago I was a runner, but I found myself slowly unable to have the stamina to run anymore. I found myself sleeping as soon as I got home from work and never able to get enough rest. When I started having neurological system and extreme fatigue, I knew something was very wrong. After a few disappointing experiences with unqualified doctors, I finally found one who discovered I had Lyme (which also reactivated Epstein Barr). I went through 5 months of intense Eastern Medicine treatment and am now in remission. Despite dealing with some neurological damage that is not reversible and my stamina not what it used to be, I am so grateful to be better than I was thanks to a knowledgeable holistic eastern medicine doctor.

What has helped me with my journey? Pacing myself, not comparing myself to others and to listen to my body and give it what it needs. I also try to allow extra buffer time to any project or deadline.

Check out Belle’s all things quilty website here and Etsy here. She offers patterns, training and video tutorials!

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Story 148

© Illustration by Life in Lyme Light.

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!

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Story 147

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.

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Story 146

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.

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Story 145

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.

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Story 144

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

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Story 143

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

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