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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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Story 142

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.

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Story 141

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.

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Story 140

© 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.

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Story 139

© 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.

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Story 138

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

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

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

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

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

~About Adriana~

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

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

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

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Story 137

Floral watercolor painting in shape of butterfly
© Illustration by Life in Lyme Light.

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

May <3 Lyme Disease Awareness Month

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

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

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

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

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Story 136

How has Lyme Disease affected your life?

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

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

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

What inspires you?

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

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