My Story

For the past five years, I have been fighting a losing battle against the bacteria that causes Lyme disease, and a protozoan recently discovered by Dr. Stephen Fry known as Protomyxzoa Rheumatica (PR) or FL1953 (its older name). I have decided to share my story with you all in hopes of generating some awareness about chronic Lyme disease and the biofilm-generating Protomyxzoa Rheumatica. 

I'm unable to participate in treatment right now due to a lack of funds. Because of this illness I have been unemployed (unable to work) for the past 4 years. 

Although this past year has been one of the worst on my life (mentally and physically), I'm still holding out hope that there might be healing at the end of this long, painful journey. 

If you would like to help contribute to my treatment, please check out the donation button on the right hand side of the page, or check out my donation site at: gofundme.com/5wyjwk

Thanks for stopping by!


From the WAY back

It seems like I've never really been "well" in life. I remember receiving a diagnosis for Mononucleosis in the 5th grade and never really bouncing back from the infection. As dramatic as it sounds, I was never the same again. I remember the feeling of deja vu only 2 years after that infection when I was diagnosed as having Mono AGAIN. The truancy department at school had my mom's phone number on speed-dial, it seemed. Although I had always been a straight-A student, it didn't seem to matter to any of the school officials. I was always feeling sick, it seemed, having headaches and there was ALWAYS that feeling of being tired that was not relieved by sleep. Although I played soccer growing up, I always had to push myself so hard to keep up with the other girls on the team. Looking back at photos of myself from middle school,  I am shocked by the dark purple circles set against a ghostly pale face that looked horribly anemic. 

In my senior year of high school, I started to develop an itchy red rash on both of my eyelids, and eventually around my lips as well. The doctor said it was just an allergic reaction to my makeup, and to quit wearing eyeshadow and apply a steroid cream to the areas. Around that same time, I was having horrible painful periods and was struck with exhaustion that led me to miss many days of school. Eventually I asked the gynecologist about the severe pain and cramping and after ruling out a few other things (after colonoscopy and barium xray), he decided to do a laparoscopic surgery to check for Endometriosis. A month later, the surgery was performed and the doctor had indeed found patches of Endometriosis throughout my abdominal cavity and on my ovaries. So, after the surgery I was feeling relieved to have an answer to some of my problems and was looking forward to finally feeling better. I had already missed about 2 months of school and was excited to get back to the normal routine and hanging out with friends. However, when I returned to my usual schedule in January, I found that I couldn't make it through the entire school-day. I was still exhausted and just attributed it to healing from the surgery. It was decided that I would finish my senior year by attending school half-day, and doing the rest of my classwork from home via a tutor sent by the school. I managed to eek by with my studies and was allowed to walk with my graduating class in the graduation ceremony, although I had to finish a night-class and a summer class in order to make up for the credits I missed. 

A year or so goes by and I'm taking classes at a local university. Living with my boyfriend, I came down with a horrible lung/chest infection that my boyfriend contracted on a plane ride back from Colorado. He evidently passed the infection on to me. I can't remember all the details, or if it was diagnosed as pneumonia or bronchitis, but it required antibiotics. I would be coughing so hard that I would vomit. I would wake up in the night not able to breathe and was scared that I was going to die from lack of oxygen! I think that what I had was called "walking pneumonia", because my bloodwork shows that I have been infected with Mycoplasma at some point. The strain of mycoplasma I had antibodies to is known for causing walking pneumnoia. Either way, the infection lasted for weeks and even after I was better, my lungs were still sensitive and exposure to cold air would trigger a coughing fit that lasted up to 10 minutes. 

A year or so after the respiratory infection, I had my wisdom teeth removed while on winter break from college at Michigan State University. Although I followed the post-surgery instructions to the letter, I somehow managed to develop a dry socket infection in one of the holes where my tooth once was. This required treatment with antibiotics. 

Fast-forward a few years into college... I went snowboarding and slipped on some ice and fell onto my right hip. I was very lucky to not have broken it. Interestingly, after that injury to my hip, new symptoms started creeping into my daily life. I went to physical therapy to treat my injury, which helped somewhat, but I was still in a lot of pain and had trouble sitting in the hard seats that most colleges have in the big lecture halls. I would have to get up multiple times during class to go out in the hall for a walk, or just constantly shift around in my seat during lecture. About a year after that injury, I saw a rheumatologist and was ultimately diagnosed as having Sjogren's Syndrome, which I had never even heard of. Next came a diagnosis of early-onset osteoarthritis, at age 24! Then came the hypothyroidism diagnosis, Hashimoto's was the name for it. I developed a horrible itchy rash on my back and stomach in 2009, according to my bloodwork I had some kind of infection with elevated WBC count, but no one could pinpoint just exactly what was causing my rash. 

That summer I had enlarged lymph nodes, and because of my sjogren's syndrome diagnosis, I was referred to an oncologist to get a biopsy of the node. Results were negative.

Fast forward a few more years of debilitating fatigue, joint pain, muscle pain, and many other symptoms... my boyfriend and I moved to Chicago. I started seeing a doctor who was familiar with Lyme disease. Based on my Igenex results for Lyme, my doctor, taking my symptoms into account, decided to start treating me for mycoplasma infection and lyme disease. 

I was on low-dose antibiotics for 15 months while living in Chicago. It was unsuccessful in treating my infections. We even tried different combinations of antibiotics and antiprotozoal drugs, which I unfortunately could not tolerate due to a scary herxheimer reaction. In a way, the fact that I couldn’t tolerate the antiprotozoal meds was a good sign because it meant that we were actually hitting the intented target in my body (the bad protozoan bugs, protomyxzoa rheumatica = PR). On the other hand, I couldn’t tolerate the medication for more than a few days due to the side effects and herx reaction. For those of you unfamiliar with the chronic Lyme jargon, a herx reaction (Jarisch-Herxheimer) happens when there is a die-off of an organism while taking an antibiotic/antiprotozoal medication and the body cannot rid itself of the toxins and dead bacteria/debris fast enough. The herx reaction results in an increased amount of inflammatory substances which are released by an immune system that is recognizing all the pieces of dead bacteria and the bacteria’s toxins. This causes feelings of increased pain, fatigue, headache, nausea, and a general worsening of all symptoms. The herx reaction is a common obstacle and some of us actually have genetic mutations that make it very difficult for our kidneys/liver to eliminate the toxins that most people can handle.

To be continued... still under construction

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