Amy's Fight Against Lyme Disease
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
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!
So what have I been up to? I lost my home in March and my dear Lyme friend took me and my cat into her home. We live in a small bedroom and my dad pays to store my belongings. I've been struggling with infection after infection because of my compromised immune system which put off Low dose immunotherapy treatment for 4 months. I was on antibiotics numerous times because of a lung infection, kidney infection, and Mycoplasma but it's now been 2 weeks off and am only treating a systemic Candida infection. "Only" lol. I have anemia, low WBC counts and many vitamin deficiencies so it's been a struggle to keep infections away. My thyroid levels cannot get balanced and my hair is falling out in clumps. We are doing everything we can but my body just keeps changing and resisting everything we try.
I was in the ER last month because of tachycardia, fluctuating blood pressure, and convulsions/seizure-like activity. My doctor thinks it's was Neuro toxicity and an allergic reaction to an antibiotic. But it's scary to not be able to feel safe in my own body. I had another episode of seizing just a few days ago. I hope we can find a way to stop it.
The postive is I was finally able to do another Low dose immunotherapy treatment about 4 weeks ago and the side effects were tolerable! I see 2 doctors next week to hopefully figure out how to get me functioning better.
I haven't been getting donations like I used to so I'm going back to work before I'm really ready to. I'm lucky to have found a place where the owner has a chronic illness too so we're starting slow at 5-10 hrs a week. I'm not confident my body can handle it but I have to try to earn money for medication and basic needs. I've sold my belongings and tried t-shirt campaigns to raise money but haven't been successful.
So today I'm asking for help because I need funds for detoxing (Epsom salts, Infared sauna, activated charcoal, etc ), supplements, bus money, gas money to give to people who take me to appointments, and funds for basics like toilet paper, detergent, cat food...
Any donations would be greatly appreciated...it's scary not knowing what I can afford month to month. My family has helped me for 3 years and their funds have been depleted too. Lyme ruins everything and one around you so please be tick smart!
Thank you for all your love and support!
Happy Lyme Awareness month!
I've been very depressed seeing myself slipping back but my doctor feels it's a good sign LDI is working. In 3-6 doses (up to 42 weeks) I will start to have no reactions anymore and hopefully I can return to work. But we have so many complications at every turn, and I had to do more testing to see what else is wrong.
I'm losing my apartment soon and have no where to go and no way to care for myself aside from $192 a month in food benefits. I'm afraid for the future but have to focus on today. So today I'm asking for donations for medications. $120 worth from MD Custom Rx is not covered by insurance. I also need $500 for supplements because of my genetic disorders, vitamin deficiencies, and compromised immune system. I've been going without some medications simply because I cannot afford them but my blood work is showing this is not good and I need them.
I'm losing a lot of hope...watching people drive, go to holiday parties, get massages and hair cuts, having families, getting promotions at work...just living their lives. But I'm slipping between the cracks and once you lose hope, it becomes dangerous ground.
Please find the kindness in your heart to share my story if you cannot donate. I appreciate all of you and wish you a very happy holiday! I'm always hanging in there...32 months and counting.
I'm here to update you on my progress and to introduce the next phase of fundraising. I am on day 13 of intravenous antibiotics and simultaneously getting Hyperbaric Oxygen Therapy (HBOT) treatments. Im getting this at a deep discount because I am so poor and sick. I have 8 more days of IVs and then hopefully no more antibiotics!!! I'm still on many medications/supplements and have 7 more weeks of HBOT to go. We will introduce immunotherapy and just keep working on building my immune system. I have a thyroid ultrasound on Monday so pray no new tumors. As my doctor says, "g-d willing" we are headed towards remission next year!
I have relocated to my Aunt Jan and Uncle Doug's to be closer to the daily clinic appointments. They truly are angels who drive me to and from, every day, as well as buy my food and supplements as needed. They have carried the bulk of the financial burden for my treatment the last 2.5 years and this is where I'm coming to you...
I need to raise $600 for the HBOT....I get a poverty discount so it's only $15 each session but it adds up when you need to do it for so long. Research shows HBOT effectively treats infections and helps heal...I'm too brain foggy to explain but please Google it lol. I have so much faith and science backing my new treatment protocols. I am very happy to report I have more good days than bad even with some other medical hiccups. I'm so happy to be alive though and know I can handle any new challenges.
I'm also trying to raise $400 for medication this week....lt never ends. My little body needs all these pills to stay alive.
Please share my story on social media, email peeps, print a flier...pray, send positive vibes or cat memes....just don't forget about me please. I'm still in this body even if I'm too sick to make it to your events.
I have suffered for years with Lyme. Am now completely debilitated and fighting for my life. I tried to press on and keep working when I needed rest and treatment. I struggled. Doctor after Doctor telling me nothing is wrong even after being diagnosed with Lyme because no Lyme-literate doctors in NY area accepted insurance. So many of same symptoms. Feeling so alone. No one can understand the constant attack the body is under unless they experience it. I write this hoping you'll contact if you need someone who understands to speak with. I also leave this comment for others in your sphere who may not understand. Hopefully, they'll be moved to give even more, if this message has helped them to realize the seriousness. Hope you're getting the treatment you need.