****Trigger Warning: Medical Photo Attached****
Many of you may have heard of my dear, sweet friend Jessica Devine who has successfully managed to drastically reduce many of her Lyme symptoms.
Jessica is the founder of the Facebook Lyme Group titled: Rise Above
Additionally, she has several other Facebook groups that have come to be as a result of the original group. The smaller groups cater to specific needs of people fighting Lyme disease.
Jessica is also part of my team and helps to manage and run our Facebook Group "Inspired By Lyme."
Inspired by Lyme is a safe place for members to come to see positivity and healing information.
Of course we offer an entire file of Lyme disease information for group members to access and utilize as needed but the main page and focus of the group is to Inspire healing in others and support one another.
We ask all artists, writers, and other creative talents "Inspired By Lyme" to display their work on our page also as a way of giving others hope and inspiration on their journey-
We are actively preparing a health and wellness retreat that may take place virtually for the initial experience and then based on logistics we would love to meet in person!
Support and compassion are hugely essential pieces on this healing journey and we want to be helpful to those struggling to find hope and positivity in the dark moments.
If you are passionate about Lyme disease and want some badass apparel to help spread awareness please check out our shop! Click SHOP NOW
Below you will read the words of my insanely brave, beautiful, and talented friend Jessica who has dedicated so much of her time to raising awareness for Lyme Disease and helping others on their journey! Please enjoy and send up a little prayer of thanks for God's work in healing Jessica!
xoxo
"This is my story of how one tiny tick the size of a poppy seed literally ruined my life. I was at the top of the world, I was happily married, had two incredible kids, a thriving business and had just published a book helping people get healthy. I felt like things were falling into place. I was genuinely happy. Anyone that knows me, knows I was a ray of sunshine on a cloudy day and the laughter when you’re crying. Simply speaking, I brought joy because making people laugh and smile has always been my true self. It feeds me. I am also very ambitious and have always been a little outrageous in my actions, yet always positive.
Then in January 2013, my family went to rent a cabin at Shaver Lake, CA, to celebrate my daughter’s birthday. I was so excited. When we arrived early evening, we quickly unpacked the van and settled in for a quick dinner. We picked our rooms and then played in the game room for hours. We were all happy to get away. We figured we would go out in nature the following day. It was dark, and I need to be able to spot Bigfoot in the light. Yes, I believe.
Anyways, I went in the bathroom to do all my skincare rituals and put on my comfy jammies. I noticed a black speck on my abdomen and went to brush it off. It didn’t brush off, I tried again. Then I had a girl moment and freaked thinking this thing is attached to me, and it was. I got grossed out, dug my fingernail into it and flicked it. Yes, I flicked the enemy that stole my life. Then I moved on, no biggie, we are in the mountains, more bugs expected.
Thirty minutes later, as I lay in bed laughing with my husband about a comedy show that we love, I had a sweeping hot/cold sensation hit me. I voiced it explaining something didn’t feel right. It got worse within minutes. Getting scared, I stood up, and vertigo took over and I started to tremble. My husband held me and took me downstairs and laid me on the couch near the fire. I couldn’t stop shaking. What I can only describe as a seizure, my mind was affected as well. I immediately spoke out loud crying, “I don’t want to die young, I have so much to live for.” THIS WAS NOT LIKE ME AT ALL.
I started visiting the bathroom often, no details sorry. It was like the FLU x 100. My husband googled trying to figure out what this might be. I had no history of anxiety and I was perfectly healthy two hours before. I ate extremely well and exercised 5 days a week. We started thinking maybe it was altitude sickness or food poisoning or too much caffeine. None of these made any sense because Shaver Lake isn’t that high. I always drank lots of coffee and I had eaten a bagel. I didn’t want to wake the kids and ruin my daughter’s birthday. I wanted to wait and see what happened.
What happened was I laid there, my husband holding my hands concerned, shaking uncontrollably and speaking of death. I felt like I was dying. Six hours later I finally fell asleep. I woke groggy but it was over. I proceeded to enjoy my 2 day vacation but I felt weak. The first night back, we sat down to watch one of our favorite shows, halfway through, BAM, it started again, body shaking and head issues and it scared me. I now suddenly had the worse back and spine pain of my life but I had recently started a squat and push up challenge so I stopped the challenge and blamed that. I went to the doctor next day. That is when this strange abdominal pressure and red circle had already kicked in. I explained what was happening in detail.
She prescribed 800 mg Ibuprofen and sent me on my way. Dismissed the red area on my abdomen. I would revisit this doctor almost weekly as these “episodes” continued and the pain was spreading. She did an x-ray and said, “Well you have Scoliosis, and this is why.” I questioned why Scoliosis, which I’ve lived with my whole life, would do this to me in an instant. She dismissed my questioning. My abdominal pain and burning sensation got worse and she sent me to a gastroenterologist. In the meantime, I scheduled myself with a scoliosis specialist. The gastroenterologist suspected ulcers and scheduled me for a throat scope procedure. I suddenly had gluten intolerance, gastritis and ulcers in my stomach and esophagus from the over use of my prescribed Ibuprofen dose it appeared. I was put on medication and strict diet. Four months later I would be made to repeat it and include a colonoscopy to further get to the bottom of my never-ending symptoms.
At this same time, I saw the Scoliosis doc, who did a thorough exam and x-ray and told me Scoliosis does NOT do what I’m experiencing. He said it was something internal, organ related. Now I had proof for my primary doctor. The next time I came in, episodes now happening almost daily, her answer was Gabapentin 800 mg twice a day. By second dose, when I was out with my mom, we were getting out of the car to buy wine, I lost my ability to stand or communicate. I looked at my Mom and communicated the best I could. She is my mom, so she knew.
She rushed me to my doctor’s office, ran inside to have them check me out. They refused to come out or see me and said ER is my only choice. My Mom, utterly pissed by their lack of compassion rushed me to ER, stopping on the way to get my 5 year old. A good friend met us there to pick up my son as not to scare him. My condition made my dear friend cry. As they wheeled me in I was in a seizure state by this point. After a 6-8 longs hours of being in a room, the doctor came to witness. He informed me that my doctor put me on a dose that was intended for an epileptic. He told me to never take that medication again. He guessed I had MS and that it will take a while to figure it out. Home I went, no solution. Offered muscle relaxers.
I went back to my doctor 1-2 times weekly for bloodwork and I had increased symptoms. I kept smelling ammonia at this point. She said it’s probably anxiety and offered me antidepressants, which I refused. At this point, during an episode, I had been rushed to the doctor by my friend. I found another primary.
Round 2. I came in and met my new doctor, explained my life, and he started some tests. Now I started visiting weekly due to a range of sporadic symptoms that were crazy, from knees going out, to a neck I can’t move, shoulders being locked up, low back pain worse than labor. I showed them the bullseye rash on my abdomen. It was still there and she offered me fungus cream. I asked, “Does that mean its ring worm?” She replied definitely NOT but it is unusual. I questioned why have I had this mark for over a year? She dismissed it. I kept getting, “everything looks good in your labs” and I got my next antidepressant offering. I always defended myself, saying I’m the farthest thing from being a depressed person, I’m quite the opposite. I said I’m just concerned because I’ve always been super healthy and I can feel something spreading and I’m frustrated that you can’t figure it out. Once again, I left. Then the heart problems started, they did an EKG, you are fine, you are just a Type A personality. Once again, I left. My blood pressure kept getting really low, I would struggle to breathe at times and my heart would jump and race insanely fast. I went back .... again! I was sent to a cardiologist.
The cardiologist put me on a 30-day monitor, stress test and blood work done once more. Everything looked good, but he ordered an echocardiogram to be sure. I would return several times when they finally diagnosed that I had developed POTS. I had very low BP now, and very high pulse. I went on medication. I revisited my scoliosis doctor to seek answers again. He ran more tests, and found I had now developed Degenerative Disc Disease and bone spurs. I thought, wow, I finally got my diagnosis. WRONG….
For the next year, I had acupuncture, chiropractic, deep tissue massages, physical therapy, cupping, taping, intense physical fitness, anything to control or try to fix the pain. I denied doing recommended steroids and epidurals, thank God, knowing what that would have done to me.
I finally went back asking for help. I was giving up. This time, my doctor sent me to do several different MRIs, cat scans, ultrasounds etc. over a 6 months period, ruling out any major issues. Blood work looked great. Heart issues worsening, dismissed as anxiety. Tremors dismissed. Guessed maybe arthritis. Referred me to a RA doctor, waited 2 months, then tested and was told it wasn’t that, back to primary. I saw many doctors during this time.
Then one day, at a restaurant celebrating a loved one’s birthday, the “episode” returned, IN A RESTAURANT. How I managed to avoid a witness for that many years is beyond me. My dear friend walked me out to see if I could shake this very uneasy feeling.
I felt like something was seriously wrong, my body was out of control, I was losing it. I drove myself straight to the doctor while my friend travelled close behind as I didn’t want my kids in the car. My parents met me there to sadly witness this. I was given an EKG and offered XANAX. I was feeling defeated. I was sick of anxiety and depression being their answer instead of looking outside the box, or hell, maybe the bull’s eye rash documented in my medical records!
By July 2016, some strange sensation hit my head, it came like waves of movement, moving pressure, very alarming. I remember sitting in my kitchen, talking to my Dad, and finally mentioning it out loud. It was impossible to describe to a doctor. I begged to see a neurologist as each week the head symptoms worsened. I started calling and begging almost daily that something was severely wrong. They insisted I come in again. I did, was given migraine medication. Did nothing. So I came back asking for help. They ordered a brain MRI. It came back with a few concerns but I was NORMAL. Wouldn’t refer me. So they sent me to do more physical therapy for 3 months. I continued to decline, by this time I was in bed each and every day. Not seeing my children for days as I had lost my balance and vertigo was getting worse. I was slowly losing the ability to speak right, and I was losing my short term memory. I had lost some basic vocabulary. I was passing out. My BP would drop drastically all the time, laying down was the only way to cope. I started to pray, TO DIE.
I wanted the years of torture to be done, and to stop being a burden to my family. I thought, can I do it? I thought long and hard. My friend of over 25 years had lost her son to suicide and I decided NO, I WONT AND CANT. I couldn’t hurt the people I love, so I knew dying naturally was how it would have to happen.
I finally just got my own appointment after begging the neurologist to see me as my primary wasn’t helping. She felt for me, saw my brain MRI and pointed out some things suspicious and booked me again the next week. She ran bloodwork and tests, I was fine according to those. But she could visibly see the torture I was living.
I got to the point, people I loved didn’t believe me, thought I was a hypochondriac. I want to say here and now, that my parents and sister ALWAYS did, ALWAYS. I might not have fought as long as I did, had I not had their complete faith in my sanity. I knew in my heart that there was something majorly wrong, I wasn’t crazy. I was dying and desperate. I had seen 30 different doctors by this time, had over 40 tests all showing I was fairly normal.
I returned to the neurologist and seeing my declining state and now questionable labs, she sent me to a kidney specialist. After many tests, he said I desperately needed to see an Endocrinologist. So, I did. I brought in all my labs and poured my story out. It was a long appointment. At the end, he said, “You are just depressed and need to learn how to be productive.” He said you need Ritalin for energy and these 3 antidepressants, add one each week. I left and never went back. I was there to evaluate my endocrine problem. Ridiculous.
My sister, my support person, always googling and trying to help diagnose me since doctors were failing me. One day, she texted me “are you sure you don’t have Lyme disease?” (I kept that text and will forever) I replied “no I would know if I had that, they’ve tested everything.” She then pointed out that I have every symptom because she did the survey. I dismissed it, well kind of, I was thinking.
That week, I joined a local support group for chronic pain sufferers as I could no longer feel isolated by no one understanding what I was trying to live with. That is where my life changed. I sat with six women at an outside restaurant and listened to each of their stories. I was the new one. A friend of mine went to support me and who suffered pain so I figured it could help us both. Then it was the 4th woman’s time to talk. As I listened, something happened, I knew her story, and I lost it, I started crying. I started interrupting her to ask questions, then let her finish and I continued to cry. I looked into her eyes, and for the first time in 4 years, I saw something I recognized. I saw my soul sister, someone who I deeply understood, within talking to her for 10 minutes. She looked at me the same way. I am married to a man, but this is the closest I could compare to falling in love with a friend. Fate had brought two desperate people together. She told about her search and what after 20 years of searching, she had LYME DISEASE. I know knew what to do. My sister and Janice had just saved my life.
I called the next day and asked my neurologist if she would test me for Lyme disease. I knew how far primary doctors had gotten me, so I thought she may help. She sent me for labs. I waited for results as my symptoms kept getting worse. I got the call, “you aren’t CDC positive but I don’t like that these bands came up reactive.” Bingo, I may have found my answer. They started calling to get me into infectious doctors in town. 20 doctors refused to see me. Although they finally got one that accepted the referral. I called for 4 weeks asking for an appointment. They would not return my call, give me an appointment or answer my neurologist so that is when I was on my own……AGAIN.
My parents, sister and I sat in my kitchen calling every Infectious Disease doctor in town. Need I say how many? They would say one of three things “We don’t treat people with that”, “We aren’t allowed to treat people with that”, and “No we can’t see you.” Once again, I had hit another wall. We found out that there were Lyme specialists, 4 in San Francisco. I called and the waiting list was 8 to 12 weeks long. I knew with every ounce of my body and soul that I had less than a month to live. I was shutting down, dying before my children’s eyes. An angel appeared on Google, there was a specialist in Pismo, less than 3 hours away. I called crying, begging them that I am close to death and need them. They also had a waiting list. They called me daily and I them, and two weeks later, they found an opening less than 24 hours away. My husband took me, assisting me to walk in, unable to function or talk properly at this point. I couldn’t keep my head up, and had to lay down for the for hour consultation.
As I poured my story out to my new doctor and he examined my records of 4 years, he started telling me what each symptom was from. The first doctor in 4 years that had seen these crazy symptoms a million times and reassured me I was far from crazy. I rejoiced and balled my eyes out. Someone was FINALLY listening. He confirmed my clinical diagnosis of Lyme, Bartonella, Babesia and Ehrlichia by my presenting symptoms and everything, including the ignored bullseye documented in my medical records almost 4 years ago. He asked us to stay the night nearby and test at a lab down the street, knowing I was not well. We had to do 17 vials of blood, my labs were sent to Germany and specialty labs in the United States. He was testing for everything. I went sent home on my first antibiotic and other stuff to help stabilize me.
The seizures were daily, and I was using a walker as I would fall from passing out. This was all too common.
I was on my first antibiotics and at this point still bedridden, in pain, literally still praying to die. On day 3, my first Herx reaction occurred. I can describe it as a sweeping toxic sensation waving through my body and I started screaming to my parents, who were babysitting me at the time. I screamed for them to get it out of me. My body went into a seizure type episode and wouldn’t stop. My mom called the doctor and I was rushed to get activated charcoal etc. to help rid the first flood of toxins. When you kill Lyme bacteria, they literally add toxins to your bloodstream, and getting septic shock is always the risk. A normal person would not respond this way. Once it passed, it was a second confirmation that this was Lyme. I started to do the recommended sauna to help rid toxins on a daily basis. I ended up in the ER as I got tunnel vision and lost the ability to stand and think clearly. Even though it was not too hot and I was there only a short amount of time, my sweating mechanism didn’t work due to adrenal fatigue and my blood pressure was too low. The ER fixed me with salt etc.
Results came in two weeks later. I had every single one of his clinical diagnosis confirmed in my blood and the shocking bonus, even to him, of Rocky Mountain Spotted Fever. It is usually deadly within weeks. Someone just two years earlier died after two days in my town. He was shocked I survived 3 ½ years with no treatment. It revealed my immune function was worse than cancer. That I probably had weeks to live if I hadn’t got to him when I did. You are supposed to be somewhere between 150-200 on this particular test, I was a shocking 7. He had never seen one this low. I was torn between being thankful to finally know, after so much doubt had been cast upon me by friends and doctors. On the other hand, I was frightened as I found the ugly truth about the disease and that a cure was unavailable.
Today, after 18 months, on my third PICC line, I have developed reactivated viruses from childhood, have a heart condition called POTS, have encephalitis (inflammation of the brain), Aluminum toxicity, ammonia on my brain, nonfunctioning immune system, adrenal fatigue, being tested for suspected Diabetes Insipidus, and more all caused by Lyme and the co-infections that came along. The co-infections are actually worse than Lyme itself.
My parents and my sister and my children have been my rock. They are why I’m still alive. I will always be thankful to my husband for what he has done to save me. He has sold everything and gave up everything to save me. I am utterly burdened by the guilt as you can imagine. Affecting someone’s dreams and goals is the worst form of torture for me personally. I’m the one, who helps people chase dreams, not crush them. At $36,000 a year, it has been more than difficult to afford my disease.
I want everyone who knows me to know my story, the one they didn’t see because they were behind closed doors. I also took the time to give you the short version because frankly if you knew everything, you would be surprised that I survived. If you were there for me, believed me and loved me through it all, I want to say thank you and I love you. If you walked away, distanced yourself, then I want to warn you I’m not the same person. I am still the ray of sunshine that I once was. I am funny and positive as I’ve always been. BUT I AM A NEWER STRONGER VERSION of me.
I am the one, who through her own suffering has gained the greatest sense of empathy you can possibly have. I suffer daily even if I say I’m ok and I’m smiling. Keep in mind I pursued an acting career 20 years ago, so I know how to act fine. I struggle but I embrace my good days, when the symptoms don’t crush my spirit and my hope. I have balls of steel and NEVER hold back on speaking my truth. I save people lives now and if I had to lose people and little of myself on the way, I’m ok with that, because I now see life in a totally different way. THINGS AND STUFF mean nothing, PEOPLE mean something.
Human kindness and human decency and loyalty and compassion are what matters, period! I am picky on who is allowed in my world. If you weren’t there when I struggled, you won’t walk beside me when I reach my finish line. I’m better than that. I don’t need anyone, but I will love the ones who flow me power and who let me love them back. I believe strongly that a cure will come.
I am Jessica, I am a LYME WARRIOR."
The information shared on this page is for informational purposes only, it is strictly opinion based on personal experience and should not be taken as medical advice. Always consult your medical provider for medical advice and before starting any new treatment.
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