I have stage 3 neuroborreliosis. A multisystemic disease which mimics Multiple Scelrosis, Parkinson's Disease, Alzheimer's Disease, ALS and Motor Neuron Disease. People often say how lucky I am not to have these disease diagnosis, but I still suffer the same symptoms of these people with these diseases, but can't get effective medical treatment because there is little research and understanding of the disease and how it disseminates.
I was bitten by a nymph tick when I lived in the Costa Del Sol Spain over 17 years ago. I wasn't chronically ill immediately. Over the years I suffered fevers, chills, muslce aches and pains, strange rashes and flu like symptoms. I brushed these symptoms off as I had 3 young children all close in age and thought I was just sleep deprived, run down or getting one of their viruses.
Three years ago at the age of forty my hair started to fall out in clumps and I began to vomit daily. I bloated and put on 16 kilograms in what seemed like overnight. I looked 6 months pregnant. I went from 50 kilograms to 66 kilograms. So I went to have a stomach biopsy. The operation went well and 2 days later when discharging from the hospital I was given the drug Endone for pain, which I reacted badly to. It was like I had had a stroke. I couldn't feel the right side of my face, my speech was slurred, I lost sensation from my diaphragm down and couldn't walk properly. I also had vision disturbances. The doctors in the ED immediately thought I had a brain tumor or MS.
After being sent to Rheumatologists, Neurologists, Endochrinologists and then finally an Infectious Diseases specialist I was given a diagnosis in August 2016 of Stage 3 Neuroborreliosis. I was made to medically retire because I was unable to stand for more than 10 minutes or walk with out canadian crutches. I developed balance and speech issues, which had people thinking I was drunk as I would often fall over or into their physical space. My health declined so badly that I resembled a very frail 85 year old lady with emphysema. My breathing difficulties made it hard for me to walk and I became bedridden. I needed to have nebulised magnesium to keep my lungs dilated and I had developed chronic fatigue syndrome, mitochorndrial dysfunction and POTS. I literally fell asleep whenever I stopped or sat down. The pain I suffered was like nothing I've felt before and strong prescription pain killers could't alleviate the pain. Pain that felt like all my bones had been fractured throughout my body and that someone was slicing my muscles up with a knife.
My CD 57 count is 10. Natural killer cells help the immune system fight off viruses and bacterial infections, but my immune system is so weak that I am always catching things. I have brain plaques, but not enough to qualify for a multiple scelrosis diagnosis which would see me in hospital with a good treatment plan. I often loose the ability to walk and talk and the treatment I require is not covered on health insurance. I did 1 month of IV treatment this year which cost me $200 per day out of pocket. I now require 90 days worth of IV at $200 per day and an antibiotic that will cost me $700-$800 per dose (tigercycline and daptomycin).
The only hope for a cure for my disease lies in Germany and costs $25,000 AUD. I have 3 children who have suffered as I have declined and resembled someone with Alzheimer's needing to be fetched from the front yard or out on the street by my 12 year old son and being reminded who they are and what I'm meant to be doing. At the end of last year my 3 children thought I would die, as I had become so sick and couldn't leave the couch or bed. I have trouble remembering my name and the names of my children and common everyday objects. I have lost some of my visual field in my right eye and have light and heat sensitivities, which when triggered cause me to tremor for at least 1 hour until my body regualtes its temperature.
My infectious diseases doctor will insert a piic line in the next two weeks and I aim to get to Germany for hyperthermia treatment in January 2018. With this treatment I can restore my health to 50-85% of what I had before this disease. If I am one of the lucky few it may even cure me. It is hard to cure late stage neuroborreliosis.
Having this disease has made me appreciate the things we take for granted in life like: talking, walking, driving a car, being able to nurse my children without pain or weakness, getting up and being able to go to work, the gift of family, friends and most importantly life. Please help me reach my target to find a cure for this insidious disease.
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