Amy's Fight Against Lyme Disease

Originally posted May 2016: Today I had to resign from my job I've had for over 2 years. I stood in front of the bathroom mirror and had to look myself in the eyes, eyes that were blood shot from crying and rimmed with dark circles, and admit I could no longer pretend I was well enough to work.

I've suffered with mysterious chronic illnesses for over a decade. I've had exploratory abdominal surgery, a partial thyroidectomy,  MRIs, scans of all sorts, and scopes exploring areas no one wants to hear about. Even with this history I am floored by how terrible the symptoms have gotten and how fast they have progressed since the summer of 2015. Last year I was dancing at a wedding with family and today I'm lucky if I can stand without feeling like I'm going to pass out. What changed!?!

Since February of this year- only 3 months- I've accrued over $24,000 in medical testing and  doctor appointments, missed numerous days of work, and suffered every single day without an answer or a way to ease the symptoms. My boyfriend will find me crumpled in a heap on my own lap sobbing from unrelenting muscle and skeletal pain. Muscle twitches and spasms will take control of my body with "bunny face" movements and flailing arms and hands when I'm stressed. As an artist, pianist, and jewelry designer I am crushed by what I can no longer do. The other symptoms range from constant nausea, vomiting, food allergies, IBS,  weight loss, reproductive problems, heart palpitations, chest pain, temperature change intolerance, numbness in limbs and face, accelerated heart rate, low blood pressure, dizziness, near fainting, seizure activity, cysts and tumors, memory loss, extreme confusion, brain fog, migraines, depression, anxiety, and moments of psychosis. 

My saving grace was my Primary Care Physician who returned from her own 2 year family medical leave this year. She was shocked when she saw me in February (I've been her patient for over 10 years)- the 50 lbs I lost and how much I've been suffering.  This was the first time I heard these very serious words, "Amy, I believe you have Lyme disease."  Her steady gaze held my own and she told me if I was going to get treatment, the time was now. It scared me. I've seen some people end up in wheelchairs from this disease, and I was already losing some function on the right side of my body. I'm in. What do I have to do? 





She referred me to an expert and I am blessed to have him right in our backyard in WI. He is considered one of the foremost "Lyme-literate" physicians in the country, treating well over 2000 patients with Lyme Disease and is a member of the International Lyme and Associated Diseases Society (ILADS).  And this matters! There is huge controversy about Lyme disease- from how it is diagnosed to how it is treated to how some people do not believe Chronic Lyme even exists. Because of these issues thousands of people suffer for years without any treatment or hope. For more information check out Lyme Wars — Chronic Lyme Disease Controversy And Treatment Explained
 http://www.sheamedical.com/the-battle-for-the-truth-about-lyme-disease 

Sadly, insurance will not cover any of these services or treatments I require. The only test that insurance covers, I took, and it was negative. I've paid $275 for a more advanced blood test at my PCP office and am still waiting for those results (only 40% of people with Lyme will actually have a positive test result- tricky bacteria!). Yesterday I secured an appointment on June 13th with a $250 deposit, but the clinic told me to be prepared to have $1500 for that first 4 hour appointment. Everything has to be paid for at the time of services- they do not bill you.

I'm overwhelmed thinking about all the supplements, prescriptions, tests, treatments, special diet food, and the cost to drive 2 hours each time I have an appointment. As I've started following other people's stories I'm finding the treatments are arduous at best- years can be spent controlling the symptoms. There is no cure. Only management. Constant management. Long term use of antibiotics and other integrative medical approaches are involved. I will know more after my first appointment.

So I wait. Actively wait. And I ask.

I am asking for help because I am afraid I am running out of time.

I want to share every bit of knowledge and light and darkness I find on this journey so I can help save someone else from this plight.

Thank you from my huge, loving heart and thank you from my friends and family for taking time to hear my story. Please consider donating to my cause, sharing this on social media, and spreading the word about Lyme disease. Your positive thoughts and prayers are held dear to my heart! 

-Amy
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Amy Hojnacki 
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Waukesha, WI