Sick w/ Lyme & Mast Cell Disorder

Hi. My name is Stephanie Fischer. I was diagnosed with late stage neurological Lyme disease. Lyme is a multi-system disease often caused by tick bites, which can lead to destruction of the host body. I was bit 25 years ago. Left untreated, my symptoms have built over the years, and now cover 6 pages. This is my story. Here is a brief local news article about my case.

Disease Beginning and Progression of Symptoms

Pictured is me at 8 years old, on the same camping trip that I later ended up contracting Lyme on. I was infected by an adult tick while I slept in a tent overnight. I awoke in the morning to initial symptoms of a very bad, strange feeling headache and heavy physical weakness and fatigue. After some effort, the tick was found, and then burned & pulled off by my family. I continued to feel weak and tired, but after that day, those 2 symptoms subsided a little. Then, 2 weeks later I got very, very sick with what my family and doctor thought was the flu. It was not. This is a typical symptom of Lyme that can occur 1 to 4 weeks after the bite. Unfortunately, there was no bulls eye rash that was visible, nor did I become acutely ill aside from my flu-like symptoms, so I was never checked out for the disease. Bulls eye rashes and acute illness occur in only a small percentage of cases. Had I been marked with those signs, it may have led to an earlier diagnosis. I continued to grow sick over the years. Symptom after symptom kept piling up, until it ended up as 6 pages of symptoms. As the years went on, all symptoms increased in severity, with new ones added on. For example, I have very serious food reactions to everything I consume, and extremely brittle diabetes, both of which began at age 21 and have since been worsening.

Significant Neurological Symptoms as of The Past 5 Years

5 years ago, severe neurological symptoms began, including constant depersonalization (a marked feeling as though part of my self is not me), constant headache and pressure, a deep constant pulsing feeling referred to as internal tremors (indicative of central nervous system infection and inflammation), visual disturbances, frequent "mind chatter," unexplained major mood changes, severe depression and anxiety, episodes of dizziness and loss of balance that last for days, catatonic states, seizures, feelings of being drunk or drugged despite no consumption, light and sound sensitivity, and more. These symptoms all began to occur together, or around the same period of time. I had no idea that they were medical in nature, and was thrown into shock, as I strugged to piece together what was happening to me and why.

Diagnosis

Nearly 2 years ago, I was finally diagnosed with Lyme disease, after nearly 25 years of being sick. I've started oral antibiotics, and I see my Lyme doctor (LLMD) about 5 hours away from where I live about once a month. Lyme is largely a self pay illness, due to major controversy within the medical community. The disease is extremely confusing to them and many don't really know what to make of late stage neurological, or chronic, cases like mine. Lyme doctors are specially trained in the disease and are capable of treating and bringing about remission and long term wellness for us. Previously, for me going to normal doctors, nothing at all worked and my illness remained a mystery. My Lyme doctor agrees that I really need IV treatment. For late stage neurological patients like myself, this is necessary to remove the infection from the brain.

Severe Symptoms as of The Past 2 Years

As of the past two years, I have been dealing with progressive encephalitis, an inflammation of the brain. I have physical swelling in my brain, sharp pains at the top of my head (progressive meningitis), a literal and signigicant mushy feeling in my brain, constant soreness on my head, seizures, increased depersonalization, more significant depression, an inability to be in the moment, inability to engage with others, cognition and memory difficulty, increased verbal articulation problems, ocassional slurring of words, trouble word finding, being ocassionally unable to speak, and more neurological symptoms. I am also dealing with extreme fatigue, enlargement of some organs, adrenal fatigue, pain in my heart, and increasingly brittle diabetes. Overall, I have a very compromised immune system which makes me susceptible to other infections, significant inflammation, and endocrine and adrenal problems. The reactions I have to everything I consume worsens my inflammatory condition, and these reactions especially affect my brain, leading to further central nervous system and neurological inflammation and worsening many of my other symptoms. In the past couple years, I've had catatonic like states after eating. These episodes last for an average of 10 minutes. During them, I unable to move or speak.

Financial Needs

I can still work to some extent, in large part because I am forced to do so in order to support myself, but I shouldn't be working, and I feel those days coming to a close unless I get proper treatment. I have only myself to rely on. I recently lost my full time job, and now work small contract jobs. Even with a full time job, it wasn't coming close to as much as I need to afford all of the out of pocket costs for my brittle diabetes, the trips to see my Lyme doctor, all of the medications to help manage Lyme and all of the symptoms and conditions it has caused, let alone what I need to cover the cost of IV treatment. My previous insurance with my former company declined this treatment. Without the IV treatment, eventually, I'm not going to make it. With reliance on contract work, I am on hold for IV, and have difficulty meeting my other medical needs. Ultimately, IV treatment is what I really need. This treatment is indicated for late stage neurological Lyme. Oral medication has been of partial help, as is typical for cases like mine. IV is far more effective than oral treatment, patients have a better chance of surviving and living a better life, and treatment is shorter than oral antibiotics (which can last for years). Anything would really help! Ultimately, my goal is enough for the length of IV treatment I need (a year or more), which costs around $20k to $30k, but as I understand people may not have that kind of money, I have set a lower goal. And, like I said, everything helps. And you aren't just helping with IV, you are helping me fight my illness with the techniques and medications that I do have at my disposal. The medications and supplements that I need to take daily number 15 to 20 on average.

Summary

If you really, really look at me as a person, I am still here somewhere, despite being masked by this diease. I still picture myself as I was at 8 really, because that was a time when I didn't have Lyme impacting my life. My life as a child, and even a teenager who was dealing with less symptoms, feels like a separate existance compared to now. I really want that person back. You wouldn't believe how much this disease takes away from you. I have been forced to only a partially lived life and especially now, there is nothing about my life that is not affected my illness. I am a different person, as of the last 5 years especially- a shell of myself being masked by this disease. While I have some emotional support, nobody I know really understands the disease except other patients. I feel nearly completely cut off from society. I would like to connect with more people. I'm hanging on by knowing that recovery is possible and that I can have a new life some day.

More Information About the Disease

For more information about the many forms the disease can take (including my own), the disease political and medical landscape, resources to find your own help, and ways to support and connect with others, please feel free to visit these resources:

Lyme Disease Awareness group on Facebook
Lyme Disease Association
Highliy recommended for movie watchers is the documentary film Under Our Skin.
Tick Borne Disease Alliance

More Information About Me

I am compassionate, creative, open minded, and have many, many interests, of which I will list just a few. I love to learn, and I like to dwell in all kinds of theory: philosophical, economic, quantum physics, cosmology, and the nature of being. I like to read and write non-fiction within those and similar areas of study. I love to listen to and play music. When I was able to, I loved to snowboard. I am an artist: a painter, photographer, clay artist, and jewelry maker. I am a programmer by trade. I have an interest in innovation, especially regarding medical science and neurological study and practice. I want to someday have the energy and ability to really make a difference.

I like to help others who are new to navigating this disease and its symptoms, regarding how to get the help they need, sharing my experience, and offering an ear. I want to spread Lyme awareness in a big way and have already been working on a project to do so, International Lyme Awareness Art Shows, which you can read about it here: https://www.facebook.com/lymeawarenessartshow.

Thanks for reading.

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Organizer

Stephanie Fischer 
Organizer
High Point, NC
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