My story is typical of that of any Lyme patient. Lots of weird symptoms, countless doctors visits, multiple misdiagnoses, years of searching for an answer…
My symptoms began when I was 15 with severe migraines; however, I have a gut instinct knowing what I know now, that perhaps I was born with Lyme disease. My exposure to Lyme and other co-infections was widespread throughout my life. First, my family has a cabin near Minocqua, WI, a hotspot for Lyme disease in Wisconsin. Second, I volunteered at the Wisconsin Humane Society, in the wildlife rehabilitation center, working with injured and abandoned animals such as baby birds, squirrels, raccoons and opossums. Finally, I worked for multiple years in a vet clinic where we saw domestic, stray and feral animals. I was bitten and scratched at the rehabilitation center and at the vet clinic many times. Who knows what I’ve picked up over the years.
After the migraines, more symptoms began appearing. In my late teens I had joint pain and excruciating fibromyalgia pain. When I went to the doctor they simply said the pain was due to the fact that I was active in high school sports and growing taller. Around this time I also started to develop neurological symptoms including brain fog and loss of balance. Many days I would feel like I was hung over despite not having touched alcohol the night before. I also developed heart palpitations, but because the EKG came back normal, my doctor said that they were due to stress and anxiety.
In my early 20’s I started to have moments where I would black out and lose time for 2-3 seconds at a time. I would also randomly forget where I was or where I was going. I had an EEG run but yet again, it came back normal. I also started to suffer from anxiety attacks during this time. Since the tests came back inconclusive the doctors diagnosed me with depression and anxiety and prescribed psychiatric medications.
My symptoms ebbed and flowed over time. Some days were really bad and some days I felt pretty good. (I never felt great but ‘pretty good’ was a drastic upgrade from a bad day.) After spending the last 10 years going to 10-15 doctors, and having most of them tell me that nothing was wrong or that I was manifesting these issues due to “psychological distress”, I started to believe them and I stopped pursuing a diagnosis or treatment. I figured they were doctors with medical degrees, they knew what they were talking about… So I let it go and believed that my symptoms were due to emotional turmoil and stress.
I self-treated my symptoms with lots of OTC anti-inflammatory medicine, lots of coffee and anything else I could do to relieve the issues that were going on. Even though the symptoms kept increasing in frequency and severity, I was able to function fairly well until I was in my late 20’s. In November of 2013, I started to see doctors again because more symptoms started to appear which I couldn’t ignore such as blistering lesions on my hands, a purple colored rash up and down my legs, a burning sensation in my legs and feet, and a red rash across my face that came and went. I believe that the stress of being a full time student in a Master’s program and working a full time job finally got the best of me.
In December of 2014, my body officially collapsed after fighting for over a decade. I was hospitalized with excruciating spine pain, right side numbness and weakness, and lost the ability to walk and talk. I remember lying in the hospital bed being able to understand everything everyone else was saying, but when I tried to respond all that would come out was stuttered and jumbled fragments of words. I stayed in the hospital for 7 days enduring loads of testing including MRI’s, CT scans, Xrays, bloodwork and a spinal tap.
I was released from the hospital with my symptoms still raging, I continued my “march of shame” from doctor to doctor trying to get a diagnosis, trying to get help, trying to get someone to believe me.
In January of 2015, a co-worker, who also suffered from Lyme, diagnosed me. I was in utter disbelief as I had only associated Lyme disease with dogs. I asked her how she knew and she said, “You look exactly how I did, when I was sick.” For weeks I wouldn’t believe her, until she told me to watch the documentary “Under Our Skin”. When I finally did watch it, I broke down in tears because I thought “that’s me…that’s exactly what is happening to me.” After this revelation, I started doing research, found a LLMD, tested positive for Lyme, Babesia, Bartonella, Erlichia and Mycoplasma and started the long road to recovery.
So far, I’ve seen 3 different Lyme doctors, tried dozens of different treatments, and have made huge strides in my recovery. Some of the treatments I’ve tried include oral antibiotics, IV antibiotics, herbal medicines, homeopathic medicines, Meyer’s cocktail, IV Vitamin C therapy, chelation therapy, ozone therapy, hyperbaric oxygen therapy, the Jemsek protocol, low dose naltrexone, colloidial silver, glutathione, MAH, MAH with UVBI, dozens of supplements and quite a few other protocols.
Right now in my life I’m just taking it day by day, embracing the good days, accepting the not so good days and keeping my determination strong to regain my health and reclaim my life. I know that when a person is in the thick of Lyme disease, the last thing they have is energy to do research and read about different treatments and protocols. My goal with this website is to help others easily find information and resources that may help them in their recovery.
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