Jessica’s Healing Story: Lyme Disease
Before being diagnosed with Lyme Disease, I suffered from excruciatingly painful physical and mental trauma. 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, with two incredible kids, a thriving business and had just published a book about helping people get healthy. It felt like things were falling right 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 have always been very ambitious and a little outrageous in my actions, yet always positive.
Then, in January 2013, my family rented 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 each picked our rooms and then played in the game room for hours. We were so happy to get away. We figured we would go out in nature the following day. It was dark, and I needed to be able to spot Bigfoot in the light. Yes, I believe.
Anyways, I went into 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 out 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 to be 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 began to tremble. My husband held me and helped me downstairs, then laid me on the couch near the fire. My body couldn’t stop shaking. What I can only describe as a seizure, but 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”. However, none of these made any sense because Shaver Lake isn’t that high, I always drank lots of coffee, and I had only eaten a bagel. I didn’t want to wake the kids and ruin my daughter’s birthday. I decided to wait and see what happened.
What happened was I laid there, my husband holding my hands concerned, while I shook uncontrollably and was speaking of death. I felt like I was dying. I finally fell asleep, six hours later. I woke groggy, but it seemed to be 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 and halfway through, BAM, it started again. My body began shaking and head issues arized. It scared me. I suddenly had the worst back and spine pain of my life. I had recently started a squat and push up challenge, so I stopped the challenge and blamed the pain on that. I scheduled a doctor visit the next day. That is when this strange abdominal pressure and red circle had already kicked in. I explained what was happening in detail.
The doctor prescribed 800 mg Ibuprofen and sent me on my way. She dismissed the red area on my abdomen. I revisited this doctor almost weekly, as these “episodes'' continued and the pain was spreading. She did an x-ray and responded, “Well, you have Scoliosis, and this is why.” I questioned why Scoliosis, which I’ve lived with my whole life? Why would it affect me this way, and so suddenly? She dismissed my questions, as if they had no validity. My abdominal pain and the burning sensation got worse, so she sent me to a gastroenterologist. In the meantime, I scheduled a visit with a scoliosis specialist. The gastroenterologist suspected ulcers and scheduled me for a throat scope procedure. I suddenly developed a gluten intolerance. I also had gastritis, and ulcers in my stomach and esophagus due to the overuse of my prescribed Ibuprofen dose, it appeared. I was put on medication and a strict diet. Four months later, I would be made to repeat the scope, and include a colonoscopy to further get to the bottom of my never-ending symptoms.
At my visit with the Scoliosis doc, he did a thorough exam and x-ray and then explained to me that Scoliosis does NOT do what I’m experiencing. He said it was something internal, possibly organ related. Now I had proof for my primary doctor. By the next time I visited my main doctor again, these episodes were happening almost daily. Her answer was Gabapentin 800 mg twice a day. Soon after taking the second dose, I was out with my mom. We were getting out of the car to buy wine, and 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.
My mom rushed me to my doctor’s office, and ran inside to have them check me out. They refused to see me and said the ER is my only option. My Mom was utterly pissed by their lack of compassion and rushed me to the ER. We stopped on the way to get my 5 year old, and a good friend of mine met us there to pick up my son, so 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 6-8 long hours of being in a room, the doctor came to witness. He informed me that my doctor put me on a dose of Gabapentin that was intended for an epileptic and advised me to never take that medication again. He guessed that maybe I had MS and that it would take a while to figure it out. Home I went, with no real solution. I was offered muscle relaxers.
I went back to my doctor 1-2 times weekly for bloodwork and my symptoms continued to increase. By this time I was in another episode, and I had been rushed to the doctor by my friend. I kept smelling ammonia at this point. The doctor’s response was, “it’s probably anxiety” and offered me antidepressants, which I refused. I decided to find another primary.
Round 2. I came in and met my new doctor, explained my life, and he started some tests. I started visiting him weekly due to a range of crazy and sporadic symptoms, from knees going out, to not being able to move my neck, shoulders being locked up, and lower back pain worse than labor. I showed the new doctor the bullseye rash on my abdomen. It was still there. She offered me antifungal cream. I asked, “Does that mean its ringworm?” She replied definitely NOT but it is unusual. I then questioned why I had this mark for over a year? She dismissed the question. I kept hearing, “everything looks good in your labs” and then I received my next antidepressant offering. I 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 still not knowing what was wrong with me. Then the heart problems started, an EKG was done and again, was told “you are fine, you are just a Type A personality”. Again, I left without answers.. 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 to the doctor.... again! This time I was sent to a cardiologist.
The cardiologist put me on a 30-day monitor, did a stress test and more blood work. 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. My blood pressure was very BP now, and has a very high pulse, which they put me on medication for. 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 work, deep tissue massages, physical therapy, cupping, taping and intense physical fitness, anything to control or try to fix the pain. I continued to deny recommended steroids and epidurals. Thank God, knowing now, what that would have done to me.
I finally went back to the doctor 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 in attempts to rule out any major issues. My blood work looked great, as usual. The heart issues were worsening, yet simply dismissed as anxiety. The tremors were also dismissed and presumed to be possibly arthritis. I was then referred to a RA doctor. I had to wait 2 months for my appointment where more tests were done, only to be told it wasn’t arthritis.So, back to primary, I went. During this time, I saw many different doctors. 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 with me. 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 doctors looking outside the box, or hell, maybe even having the bull’s eye rash actually being documented in my medical records!
By July 2016, strange sensations hit my head, it came like waves of movement, moving pressure. It was very alarming. I remember sitting in my kitchen, talking to my Dad, when I finally mentioned 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 the doctor and begging, almost daily, that something was severely wrong. They insisted I come in again and then was given migraine medication. Which of course, did nothing. I came back asking for help, again. This time they ordered a brain MRI which came back with a few concerns but I “was NORMAL”. The doctor still wouldn’t refer me to a neurologist. Instead, 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 the 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 and 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 WON’T AND CAN’T. I couldn’t hurt the people I love, so I knew dying naturally was how it would have to happen.
I finally decided to get my own appointment after begging the neurologist to see me, as my primary wasn’t helping. The neurologist felt for me. She saw my brain MRI and pointed out some suspicious things and booked me again the next week. She ran bloodwork and tests. I was fine according to those tests. But she could visibly see the torture I was living.
It got to the point where people I loved didn’t believe me. They thought I was a hypochondriac. I want to say here and now, however, that my parents and sister ALWAYS believed me, 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. She saw my declining state and my questionable labs, so she then sent me to a kidney specialist. After many tests, the kidney specialist 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, was always Google searching and trying to help diagnose me since doctors were failing me. One day, she texted me and asked, “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 for 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 along to support me. She also suffered with 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 whom 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 journey and what after 20 years of searching, she had LYME DISEASE. I now knew what to do. My sister and Janice had just saved my life.
The next day I called 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 be the one to help. She sent me for lab work. 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. However, they finally got one that accepted the referral. I called for 4 weeks asking for an appointment. The infectious disease doctor’s office would not return my call, give me an appointment nor 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”, or “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. Then 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, assisted me in walking in, as I was unable to function or talk properly at this point. I couldn’t keep my head up, and had to lay down for the four 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. This was 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, knowing I was not well, and test at a lab down the street the following day. 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 was sent home on my first antibiotic and other stuff to help stabilize me.
I was having seizures daily, and was using a walker because I would fall from passing out. This had become all too common.
I had begun my first antibiotics and at this point still bedridden, in pain, and 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 a risk. A typical person would not respond this way. Once it passed, the Herx reaction was a second confirmation that this was Lyme. I started to do the recommended sauna therapy 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 the sauna 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.
My extensive lab work 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 in my town, just two years earlier, died after two days of contracting it. The doctor 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. He explained, “you are supposed to be somewhere between 150-200 on this particular test”, I was at 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.
After 18 months, on my third PICC line, I had developed reactivated viruses from childhood, have a heart condition called POTS, have encephalitis (inflammation of the brain), Aluminum toxicity, ammonia on my brain, non functioning immune system, adrenal fatigue. I was also being tested for suspected Diabetes Insipidus, and more all caused by Lyme and the co-infections that came along with it. The co-infections are actually worse than Lyme itself.
My family has 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 had been more than difficult to afford my disease.
After 18 months of PICC lines, I then had extensive dental work done to address infections and metal toxicity in my mouth. Root canals and metals were clearly holding me back. I have since continued to treat these diseases with natural methods. Alternative methods work. I have found great success in natural medicine.
My severe symptoms have resolved; no more seizures, my memory is back, I can walk unassisted and my pain has improved greatly. I finally have my heart condition and endocrine issues, caused by Lyme, under control as well. I still viciously treat Babesia, but RMSF, Ehrlichia and Bartonella are in remission!
I am also working on strengthening my immune system as I continue to treat Lyme, toxicity and viruses. I still crash and struggle, but I have made incredible progress. I remember feeling like all hope was lost, so please never give up because I am proof that we can live again.
I try to support others daily in the support groups I help run, as it gives me purpose. Raising awareness from the moment I got diagnosed, has helped me find meaning to my fight. Even if I only help one person get diagnosed sooner, or help guide them to answers, it's all worth it. It also helps others get validation from their family and friends since this disease is very lonely without support.
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 still 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's 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, human decency, 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 is coming.
I am a LYME WARRIOR. Keep fighting. A cure will come.
Jessica