Shelby’s Lyme Story – Disability is not a bad word


Shelby’s Mother

In 2011, my daughter Shelby had graduated High School and was about to make the leap of her life to go to college. Little did we know that after her freshman year, our lives were going to change, in the worst of ways.

Growing up, Shelby was a vibrant, active young girl who aspired to be a teacher and helper of others. She liked to play soccer, dance, cheerleading and would spend most of her days outside in the woods. At 17, she had become exhausted easily, always complained of feeling sick and had almost daily headaches. She became anxious and doctors told us that it was all caused from stress because she was about to graduate and go off to college.

Once her junior year of college rolled around, these symptoms started to rear their ugly head after a concussion from cheerleading. Around this time, she also adopted a dog at whom even with flea and tick as well as the lyme vaccination had 6 ticks on her that summer. She would sleep on Shelby’s bed daily, but we never thought anything of the ticks after they were removed.

Shelby started to have trouble getting to class and being able to focus, her anxiety had become so extreme and her headaches and fatigue ruled a lot of her life. She had trouble concentrating and had some chronic pain, but she thought that everyone had felt this bad since doctors never took her health problems seriously since she was so young. She began to lose eyesight and had to get glasses. Shelby would go to class and go back to the dorm to rest for hours, but was still able to keep up with friends when she wanted.

After her concussion, her life began to spiral out of control after that. The migraines became everyday occurrences, her mental health was consistently scary and she consistently had back pain, flu like symptoms and struggled to keep up and do normal things. This was a silent struggle, as many doctors would not listen to her complaints.

In 2015, Shelby and a friend had went to virginia for spring break, where she ended up in the emergency room because her left side of her face and arm felt numb. She was rushed to the hospital and we thought she might have been having a stroke. Doctors told her it was a migraine, gave me medicine and sent her on her way. She was very uncomfortable, fatigued and in pain during this trip and it started to become obvious that she may actually be sick, even though the doctors said it wasn’t. At the time it was something that her boyfriend and her dealt with.

Senior year came a long and she was able to continue with school, but things were becoming much harder than before. The fatigue was like this black cloud that followed her around and dictated everything she did.

Things hit an all time low after coming back from that spring break trip to Florida, April 2015. Shelby’s anxiety was at an all time high, her headaches were no longer manageable and she was not able to have a fun trip, as she spent a lot of time resting in pain. As soon as they came home, the joint and muscle pain began to become more intense. It was no longer a question if  something terribly wrong was happening, there was. Doctors could no longer deny her symptoms anymore, but it was a struggle to get testing.

Shelby’s Perspective

“I only had one month left of college and to this day I will never know how I found the strength to make it through finals while feeling like I was on my deathbed. At points I actually thought I might die before doctors figured out what was going on.  My boyfriend had to begin to make me food and I would spend any time away from school laying down. I was having a hard time showering and doing basic needs. We were set to move out in a few weeks and my parents had to come to move us out, because I physically was having a hard time walking and had no strength to lift things. We were all scared.”

“I was seeking a full time job, as I thought I would just wait and see the specialists, they would give me medicine and I would be fine within a few months. Doctors started to suspect MS and I was starting to get really scared. I had just graduated college and I had MS? That was not how I thought my future was going to play out, I had worked so hard for four years to get my degree. We had MRI’s done that confirmed it was not MS. I had taken a job and was struggling to work, I would come home from work and sleep and need someone to bring me food. I would get up the next morning and drag myself to work feeling like I was literally dying, all while working in a stressful position of behavioral interventionist. I had begun to drink coffee even though it gave me migraines and stomach pain just to function.

“I was sent to a rheumatologist who diagnosed me with Fibromyalgia. She didn’t do any other tests, just felt a few spots on my body and I was diagnosed. I had no idea what it

“The pain had become unbearable. I was having crazy mood swings and I would get so angry that I actually scared my parents. I would scream and yell, I felt like a whole different person and had no control over my emotions. My boyfriend had to hold me up in the shower because I thought I would pass out and had a hard time washing myself. He had to carry me to the bathroom and I would cry because of the pain and fatigue. I began to only wear comfortable clothes and couldn’t wear bras or underwear because it was so painful. My anxiety was the worst it had ever been. I had become delirious at points, couldn’t remember my name, where I was and would have uncontrollable bouts of shakes that seemed like seizures. I had numbness and a lot of confusion. My memory was so bad I couldn’t remember to feed myself or drink water. I had become basically bed ridden and would only get up to walk downstairs to the couch. I had nights where I had to crawl across the room to reach my medication because I was too weak to walk. My boyfriend began to comb and dry my hair. I struggled to read, watch tv and even talk at points. I had to use wheelchairs at this point to get around.”

I had times where I was in and out of the emergency room but they still had no answers. Doctors leaned on the Fibromyalgia diagnosis and would not investigate further. It was a catch all for them. Fibromyalgia did not cover most of my symptoms and we seeked more opinions. I have had very traumatic experiences with doctors, especially in the emergency room calling me crazy, depressed and that I quote “need to stop pretending” while looking into my face and holding my shoulders as I was shaking uncontrollably and sobbing from the pain, because the tests came back clear.”

The second rhumatologist said I was the worst case she had ever seen in her 30 plus years in practice. My symptoms involved, muscle pain, joint pain, headaches that turned to migraines, nausea, dizziness, trouble walking, confusion, extreme weight loss (30 pounds within a month), trouble eating, trouble swallowing, dry mouth, trouble speaking, memory issues, vision loss, double vision, muscle spasms so severe I would cry in agony, flu like symptoms, night sweats, trouble sleeping and I even lost chunks of hair. (I know there are more symptoms, there are just so many to list)

She tested me for everything under the sun, lupus and other autoimmune disorders and nothing came back positive. She started me on muscle relaxers and sleep medication because I was not sleeping at all on my own. This gave a slight improvement. She still said I must have fibromyalgia and that there wasn’t much she could do and that I need to accept and come to terms that this would be my life. She even told me to move to a warmer climate like Arizona to help with pain.

At this point I actually feared going to bed because I didn’t know If I would wake up in the morning. Sometimes I didn’t care If I did. I felt delusional and felt paranoid almost all of the time. I would have crazy thoughts that consumed me like thinking a dead person could be in a dumpster, like truly basically believing it was true for no reason at all while walking by one. I saw things that weren’t there like thinking a tree was a person and freak out internally. Fight or flight mode always, I felt like I was the only person I could depend on.

We then seeked a third opinion from a highly regarded top rheumatologist at Dartmouth. We came in and after reviewing everything said that there was no way that I had fibromyalgia and that my symptoms were extremely severe. He told us that he wanted to do more scans as he thought I could have ALS. I had the scans done, (terrifying waiting for the results) to get everything come back as normal. He told me it was fibromyalgia and sent me back to my second doctor for treatment. We even asked if it could be Lyme and he said absolutely not. Emergency room and hospital visits tested for Lyme using the Elissa and Western Blot which came back negative of course.

I was hopeless and doctors told me I had seen all the specialists I could (which was a lie, but they were getting sick of dealing with me and didn’t believe me). We then decided to seek a Lyme literate doctor to get better testing. There were not many here in Vermont even with the high rates of Lyme disease. The only reason we found out about her was from a client of my mom’s whose daughter was very ill (similar to me and all her other tests came back normal) and just found out it was Lyme. So off we went to the doctor.

We had begun to spend thousands of dollars on testing. Again Lyme came back negative but I did have a lot of bands come back as reactive, just not enough to get the official diagnosis. I tested positive for bartonella through blood work so we began oral antibiotics and other herbal remedies. I was not getting better so we sought for a new Lyme literate doctor who was a naturopath. She was an hour and 10 minute drive away each time. For once I felt validated by a doctor and truly cared about it for the first time in my entire 25 years of life.

Visits, testing and medications were so expensive my parents were barely getting by. I was still unable to work at this point. With the help from the muscle relaxers and sleep medications I was able to walk. I also got put on tramadol for my intense hip pain which I later found out was a hip impingement that doctors refused to look into for those three years because they still denied the co infections, Lyme and blamed it on my misdiagnosis of fibromyalgia. All other doctors basically refused to treat any symptom and blamed everything on the misdiagnosis. We decided to test for babesia and found that I had that as well. I have still not been able to afford any other types of testing and could have more infections that we don’t know about. I tried oral antibiotics, herbal therapies, chiropractic, massage, hypnotherapy, therapy, biomagnetic therapy, hyperbaric oxygen, vitamin IVs, B12 shots (will post an actual list at the end) with very little improvement.

Things I have tried so far that have only helped slightly:

  • Oral medications which ruined my stomach after years of use
  • IV vitamins that were very expensive and couldn’t use on a regular basis
  • Hyperbaric treatments (ten) Couldn’t do more it was 800 dollars
  • Hypnotherapy to help anxiety
  • Therapy to help with dealing with my parents and all that comes along with being chronically ill
  • Biomagnetic treatments which cost 70 dollars every time
  • Acupuncture
  • Massage Therapy
  • T (Couldn’t continue because of hip and other symptoms)
  • Essential Oils
  • Meditation
  • Water therapy
  • Chinese herbal treatments- too expensive and made me very ill
  • B12 injections
  • Other herbal medications
  • Homeopathic medications
  • Medical Marijuana
  • Magnesium cream and tablets
  • Chiropractic Care
  • Oral Vitamins
  • Anxiety Medications
  • Depression Medications
  • Muscle Relaxers
  • Sleep Medications
  • Migraine Medications
  • Pain Medications
  • Probiotics
  • Tried a Ketamine Infusion at the emergency room once that did not help my hip pain.
  • Assistance with a wheelchair
  • Changing my diet to gluten free, no dairy and low sugar
  • Paleo Diet
  • Allergy Medications and shots
  • Nausea Medications
  • Ginger Root tea and Candies
  • CBD
  • Pain patches as well as creams
  • Two unsuccessful cortisone shots in my right hip

“Lyme has a way of stripping us down to the very deep layers of what makes us ourselves. It has made me more compassionate, strong and confident in my own abilities to keep moving forward. This Lyme community has saved my life countless times and I continue to advocate, help others and make changes to my health and recovery plans. We are more than our illness and it’s okay to say that sometimes it absolutely does disable us. Disability is not a bad word and your worth does not need to be tied to a job or how productive we can be in a given day. You are enough just as you are. We are not alone in this fight.”

Follow Shelby on Instagram: @littlelymelife

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