How has Lyme Disease affected your life? What inspires you?
The story of my Lyme Journey:
Hello fellow Lyme Warriors and those who love and support us..
My name is Danielle. I’m a 30 year old Paramedic, Daughter, sister, wife and now a Lyme Warrior.
My journey with Lyme began long before my diagnosis in May of 2018… 9 years before, infact. I’ll admit I was a victim to the naive idea that Lyme could only be contracted in the northern states, that you’d see a large tick on you or see the Bullseye rash.. But for me this was not the case.
I was born and raised in Texas and have only traveled between here and Louisiana to visit family, hunting and fishing with my Dad. Lyme Disease is actually something that is not ever mentioned in these parts because many believe it doesn’t exist here. I am among the unfortunates who did not know they were bitten, so timely treatment was not an option. I never developed a Bullseye rash, no sudden onset of flu-like symptoms, no accidental finding of the tick. My LLMD has decided that the timeline that I was possibly infected was when the symptoms began, at the age of only 21..
Since I was in the service of others as a practicing Paramedic in Emergency Medicine on the Ambulance, Fatigue was never a stranger due to the strenuous 48-72hr shifts with little to no sleep.. The horrors that we witnessed on a daily basis that true nightmares are made of was my explanation of the anxiety, depression that I felt and ADHD was another Doctor’s explanation for my inability to concentrate, retain information and short term memory loss. The back and joint pain was chalked up to all the heavy lifting, and moving all the bags and equipment while carrying patients three times my size down stairs and into my ambulance. Little did I know that these were the early symptoms of the Lyme Disease beginning to dig its claws into me.
As the psychiatric presentation tore away at me with anxiety attacks and deepening depression, the desire for isolation and crowd avoidance, I began to experience several new symptoms that were also disregarded by local Specialists. My friends and I had began to regard to myself as the “Medical Unicorn” because no one was ever able to explain what was happening to me and why.
At the age of 23, I had my first Colonoscopy that came back inconclusive and SITZ marker tests that showed the illuminated markers still in my intestinal tract a week later due to “Delayed Gastric Transit” or as its otherwise known as, Chronic Constipation. I would not be able to go to the restroom for up to two weeks without the assistance of laxatives. When you have specialists shrug their shoulders and expect you to accept that as an explanation and an answer for your pain and condition, it’s very disheartening… I began to feel like I was crazy; that it was quite possible that I was imagining all of these things because after all, every Doctor i sought answers from kept telling me nothing was wrong?
At 25, the cardiac symptoms began… Palpitations, runs of SVT…
As a Paramedic, I had the luxury of having a cardiac monitor at my disposal to catch the event of a dangerously high and erratic heart rate on an EKG and also knowing how to “convert” out of the rhythm by stimulating the vagus nerve by bearing down. I was on shift and was woken up due to severe chest pressure and the pounding of my heart beating at a rate of 170.. Needless to say I was terrified.
So, I caught the event on the monitor just how the Cardiologist expected us to with a patient and made an appointment with the best Cardiologist in the area. I had been in the operating room with this man several times as he cut open patients that I had brought to him having active cardiac events and watched him save countless lives..
So you can imagine the fear, humiliation and confusion that flooded me when he looked at my EKG, and asked me “Who gave you permission to take this EKG?!?”
When I explained to him that I was a Paramedic, that I captured the event as it was happening just as he had always requested of other patients so he could see what was happening.. He responded with “There’s nothing I can do for you. You’ve just wasted my time. Don’t come back..” And tossed my precious proof that I wasn’t crazy carelessly across the desk as he walked out.
For the next four years I would go on to experience multiple events like this.. Each one more terrifying than the last.
I finally found another Cardiologist who took me seriously, treating the symptoms but again I was met with the same confused look and statement, “We can attempt to manage your symptoms but we don’t know what’s causing your condition”.
I had worn several 30 day cardiac monitors, they wanted me to have an ablation for a condition that they diagnosed as “AVRT” but what was later confirmed to be Lyme Carditis with an incomplete right bundle branch block after my Lyme Diagnosis..
My body steadily began failing me more and more.. What took me off of the ambulance for a time was me fracturing two metatarsals in my left foot by accidentally dropping a gas pump handle on my foot. The Doctors were shocked at how fragile my bones were and what I didn’t know at the time was Lyme robbed my body of almost all of my Vitamin D, as well as multiple vital hormones.
After I had healed from the fracture 6 months later, I found a different job working in the refineries as a Paramedic first responder because my body was slowing down and I could no longer keep up with my crews and no one could explain why. I was slowly being robbed of my dreams; my passion. What I felt was my purpose in life.
One day a year later at work while walking, my right knee popped. It felt like a rubber band had snapped in the inside of my knee and a warm sensation immediately spread, followed by significant inflammation causing an inability to bend my knee or bare weight on my leg for several weeks. What I had experienced was torn meniscus due to the lyme eating away at my knee. My left knee was soon to follow. To make a long story short, it rapidly progressed to high grade chondromalacia patella with bone exposure, leading me to require bilateral knee replacements before I’m 40.
Fast forward to 2018..
I had been seen by over 9 Physicians including specialists and still no one could tell me what was going on… I finally met a NP who specializes in hormone replacement therapy. I made an appointment and had complained of chronic fatigue, relentless insomnia, anxiety, depression, daily headaches, neck, back, joint pain, muscle spasms in my neck and shoulders, swollen glands in my throat, low grade fevers, unexplainable weight gain, hair loss, mood swings, ADHD symptoms and so many other odd symptoms.
He performed a wide panel lab test to rule out anything and everything including autoimmune and he found that my hormone levels were critically low (testosterone and progesterone), my Vitamin D significantly low and also an abnormal lab result of a positive ANA level with a 1:180 titer which is normally indicative of Lupus… He referred me out to a Rheumatoid Doctor but the wait time was 3 months so with the news that they were “99% sure I had Lupus”, time was of the essence. I wasn’t willing to wait…
Thanks to my Mom, I was blessed to be referred a doctor who specializes in the strange and unusual 2.5 hours away from my house who happened to specialize in infectious disease and also is an LLMD. My initial consultation was very informative and so many tests were ran. She was the first person with a Medical Degree aside from the first NP to listen to me, and truly appreciate the significance of the symptoms and search for answers.
I was diagnosed with Raynaud’s Phenomenon, Fibromyalgia and she ran a battery of tests on me. She told me in great confidence that she did not believe it was Lupus but Lyme disease even though I had told her that I did not ever remember being bitten by a tick but I do go hunting with my Dad and have ever since I was a little girl.
When I received the call a week later with the diagnosis, I was relieved because I was so naive. All I could think was i finally had a name for what had been plaguing me for almost a decade!! I called my Husband, my parents and Mawmaw with the “amazing news” that I wasn’t crazy and that I had a name for the problem I’d been struggling with..
I thought Lyme was a quick fix..
Simple and easy..
A round of antibiotics for 30 days and I’d be good as new..
We celebrated the idea that I’d be healed soon of my troubles, pains and symptoms and to finally know what “normal” would feel like, but I could not have been more wrong. What was given a name was truly a thief that I would learn had been busy stealing pieces of me as Doctors turned the other way… I was about embark on a journey to my own personal Hell on earth…
To experience the worst kinds of pain and be forced to try to lead a normal life at pain levels most never experience in their entire existence. To rely on medications just to get out of bed to make it to the restroom and back and give me the false illusion of a quality of life that doesn’t even hold a candle to the one I once had. And although no one prepared me for this, I truly don’t believe that anyone can…
My LLMD told me “You must get worse before you get better“, and I was silly enough to think, “Can it truly get much worse than this?” And “How bad can it be? You don’t know what I’ve dealt with for the last 9 years..”
But I would soon find out I was so wrong.
Once the treatments began, I thought I was dying.
I still feel like I am from time to time when I have a flare in symptoms… No one tells you that you will experience nausea at the slightest smell of food even when you’re starving… That you will become sick to your stomach and want to vomit after eating. The carb and sugar cravings that come from the Lyme wanting to recharge itself… And as soon as you give into the cravings, you are writhing in pain because you’ve allowed the Lyme to feed and get stronger.
The excruciating headaches from the muscle spasms in my neck and shoulders because my spine is shifting from the muscle atrophy that has caused the development of scoliosis… I was also never properly informed about detox methods so all the bacteria that was dying off was trapped in my body with no way to escape. I was stuck in a constant Herxheimer reaction… It causes an exacerbation of all of your symptoms tenfold.
I thank God for another Lymie who reached out and even though she never had met me in person, she bestowed so much kindness and compassion just to see me heal and have courage, and because of her she did help me..
I’ve experienced so many life altering changes:
My Husband and I had to move in with my brother in law because I was no longer able to climb the stairs at the house we were renting..
I had to take medical leave from my wonderful job that I put my heart into since Emergency Medicine was no longer an option for me.
Lyme has truly robbed me of my dreams, my memories with the short term memory loss, my career, my ability to heal others and “save lives” because now trying to save mine is a full time job..
Lyme Disease comes as a thief in the night and steals the most precious of things.
Once where I used to be able to rattle off treatment protocols and drug calculations to my EMT students is now replaced with empty shelves in my mind, covered in dust where there once sat an abundance of books, full of knowledge that I could pull from and recite at will, word for word.
Lyme has made me a prisoner in my own body..
I’m 30 years old and bed bound on my bad days.
On my good days, I’m able to “enjoy” an hour of activities before the pain overcomes me. Having Lyme will humble you in ways you never knew possible… Asking for help and relying heavily on your spouse and family, using a wheelchair if there is a lot of walking just so you can be a part of the festivities… Having to have someone shop for my groceries because the Chemo makes me too weak to even make it through a grocery store. It will make you a new, compassionate and grateful creature.
If you thought you cherished the little things, prepare to become even deeper than that… You will cherish the days when you don’t have to convince yourself for 3 hours to get up and shower because today you have enough spoons… You will cherish the days when you have a good night’s sleep and didn’t stay up all night because of the pain.
You will cherish the kindness of random strangers, who when they see you struggling, they stop and ask to pray with you instead of just walk past and stare… You will be grateful for the unconditional love of those who stick around, even though you’re not a fraction of the person you were but they love you regardless.
I’m grateful for my Husband, who has lived out his vows to me a million times over; who chose to marry me even when he knew I was very sick and may not get better.. He chose to take on this battle with me, fighting by my side every step of the way and refuses to let me give up.
You will be grateful for the family who understands, loves, supports and lifts you up daily. To remind you that your battle is going to bring Glory to God and has not been fought in vain.
You will be grateful for those who take the time to listen even though they don’t understand what you’re going through- these people are beautiful.
You will be grateful for those who believe in you, believe in your fight and refuse to let you give up or feel sorry for yourself. You will be grateful that through word of mouth or just a like and share on social media, others give you and so many others like you a voice..
To give you an insight of a day in the life of a Lymie:
When I wake, I feel like my bones are breaking and have the worst “toothache” like sensation in my bones. The lyme arthritis in my neck, back and knees caused limited movement, muscle spasms, and changes in my spinal structure as well as integrity. I’m helpless against full moons and weather changes, as those also intensify my symptoms. I went from saving lives to fighting for my own life.. But on a positive note, I will say the anxiety, depression, and also cardiac symptoms have resolved with treatment.
My doctor was able to confirm my Lyme Diagnosis with the Western Blot as well as CD57 level. I can’t stress enough the significance of the CD57. It checks to see how impacted your immune system is, and if you have Lyme that may be lying dormant, this is how they will confirm it. It is possible to have a negative Western Blot but still have active Lyme during treatment phases due to the Lyme bacteria hiding from the immune system. With my CD57 Level, I was diagnosed with Late stage lyme disease with a level of 22. My initial testing only showed one band but 6 months into treatment, the second one showed up that had been hiding. Trust the CD57. With recent treatment of a pill form Lyme Chemo, my numbers have jumped to 59 after almost a year of different treatments that my body wasn’t responding to, finally this one is working.. Trust the process. If you have a doctor who’s unwilling to utilize the CD57 level, find yourself a new Doctor. It may save your life.
If there is something that I may say to other Lymies:
- DETOX is the most important part of your treatment. I have found that Alka-seltzer Gold that you can purchase From Amazon is a God send. Luke warm Epsom salt baths help to pull the toxins from your skin. Anything hotter will cause a herx reaction and cause significant complications such as shortness of breath, elevated heart rate, migraines, and severe weakness… Dry saunas help you detox as well. Without the humidity, I find that it helps reduce my symptoms. Regular colon cleansing removes toxins that may be hanging around… I can’t stress enough how important this is to your healing and improvement. Drink plenty of water through all of these methods to flush your kidneys and liver. If not, you will stay in a constant HERX reaction.
- Remember you’re not alone. Although I’m bed bound 80% of the time, the Lyme communities that have opened their arms to me have made me feel understood and not alone. You’re not alone. I promise. Join them. There are beautiful people there.
- Self care is the utmost priority. Don’t ever feel guilty for taking a day or even a week to rest. You are healing.. I will personally attest to that I go through guilt from time to time because I have went from being the caretaker to the one asking for help and being cared for. There is no shame in this. Dedicate your time to healing. You deserve it.
- Never ever under anything circumstance give up or give in. I know the treatments hurt. I know that you get tired of taking countless pills just to survive. I know the pain pulls us down like tidal waves but I promise there is hope. We must cling to that and never let go.
For those who care for us; friends, family, etc.
- Please be patient with us. We are doing the best that we can. We are not lazy; we are healing. We feel guilty for being prisoners in our own body so please know that on our bad days, that we are doing everything we can to survive this storm. I know you think there is nothing you can do, but the sweetest and most uplifting thing you can do is to love us through this. Just be there for us. Know that we are still in this body and we will return one day. That we love you despite everything and are grateful for you never giving up on us.
- Advocate for us at Doctor’s appointments, against those who are skeptical of our conditions because we force smiles through our pain to give the illusion of a normal life… Be our voice when we need it the most. Help us spread awareness. With awareness comes a cure..
- Thank you for the love, support, prayers and friendship.. Because of you, we are Lyme Warriors.
Thank you for taking time to read my story. I pray each of you that are struggling with a disease/illness; that you find remission soon. Thank you for being there for me and know I’m here for you. Remember, you are not alone and you are loved. Keep an active prayer life and don’t lose faith. I believe that we will be healed in His time..
“Let go and let God.”
Danielle Clary, “Medic Dee” The Lyme Warrior. Follow her brand new blog journey by clicking here.