My name is Aly Shwedo, and I have immune dysfunction, POTS, and Lyme disease. I have been severely ill for three years and have spent most of those years bedridden. Widespread body pain, tachycardia, fainting, seizures, migraines, joint pain, extreme fatigue, nausea, vomiting, and more
. After extensive research, I have decided on pursuing treatment with a top doctor in Seattle, WA. I feel confident that regular visits with these specialty trained doctors will be what it takes to restore my health and body. I have been unable to support the costs of this treatment due to the disease. It is my hope that with this fundraiser, I can extend a hand and ask for help from the people that have made my life so special.
We are unable to support this protocol without outside assistance, so I am writing this as an attempt to ask for help. Every donation, share, prayer, and positive thought is graciously appreciated in so many ways. My story
In 2013, I was beginning my third year of college, studying abroad in the Czech Republic, on the executive board of my university's SGA, working two jobs, and close to finishing my college degree. I was active in the community and had a very busy social life. I had dreams of teaching English abroad and one day joining the Foreign service. Instead of pursuing those dreams, I am currently battling a myriad of chronic illnesses including Postural Orthostatic Tachycardia Syndrome (POTS, a neurological illness that affects the heart), Chronic Fatigue Syndrome/Myalgic Encephlomyelitis, and neurological Lyme disease.
While in the Czech Republic, I knew something was wrong. Nausea started to creep up and I began to experience dehydration, vomiting, constant nausea, migraines, brain fog, and exhaustion. I thought it was just a traveler's bug and expected it to go away, but it didn't.
1. Surgery and the first diagnosis. When I returned home, I still believed that my flu-like symptoms would go away. It wasn't until I was sitting at my desk that the President of the SGA told me to leave immediately to see a doctor. I was diagnosed with H. pylori, a stomach infection that has been putting holes in my stomach and causing bleeding. I began a month long course antibiotics and, again, expected this to disappear. Eventually, I had to have my gallbladder surgically removed and two subsequent surgeries.
2. A delayed diagnosis. After nine months of ER trips, referrals, and specialists, working their hardest to help me, I finally was diagnosed with viral CFS/ME and late stage neurological Lyme disease. My Epstein-Barr/mononucleosis levels were the highest that the lab had ever seen, my immune system was deeply low, and I tested positive for Lyme disease and a brain infection called mycoplasma.
3. A treatment worse than the disease. I began an extensive amount of antibiotics and antivirals in the hopes of returning to a normal life. I moved home and even saw a Lyme specialist in Tennessee. I went on a strict diet to heal multiple sclerosis. Despite the work I put into fixing my body, I ended up depleting my gut bacteria and my immune system further. I was far worse than before. Seizures, exhaustion, migraines, POTS, insomnia, widespread bone and nerve pain, vomiting, weight loss, and more. I didn't know what to do. I battled both to get a diagnosis and again to embrace the treatment and neither helped. I was in a worse place than before. My insurance company denied most claims and I was still unable to work. It has been a two and a half year battle.
4. New hope. A year and a half ago, I made the switch to see one of the top complex chronic illness/Lyme disease doctors in the country. I flew to Seattle and experienced hope for the first time. I started to get better. My symptoms, pain, cognition, and abilities were so significantly diminished. I believe that this doctor and this treatment path will heal me and get me better. I will return to a normal life. Of course, it doesn't come without a limitations. Being sick and not generating an income makes me unable to support this protocol. Blood testing, medications, doctors appointments, insurance, IVs, and surgeries all come at a high cost.
Through the help of this fundraiser, I have been able to reclaim parts of my health and hope. Every donation, share, prayer, and kind word has been immensely helpful. Asking for help is hard, but this fight has been nothing but uphill. My hope is to go back to school, find a job doing what I love, travel, and give back to you and the world that has helped me heal.
How to donate:
To donate via this site: click on "Give Now" above.
To donate via personal check, please e-mail Aly at [email protected]
for mailing information.Lyme disease facts:
1. Only 1 in 2 patients develops the classic "bulls eye" rash. This means you have a 50% chance of not getting accurately diagnosed after a tick bite. Many people do not even remember a tick bite.
2. Standard blood testing has an estimated sensitivity of less than 50%. A negative Lyme disease test does not mean you are not infected.
3. Most ticks carry multiple disease-causing pathogens called co-infections.
4. The average Lyme patient takes 2-3 years to get diagnosed correctly.
5. A Lyme-transmitting tick can be smaller than the period at the end of this sentence.
6. Lyme disease bacteria can survive short-term antibiotic treatment. The current guidelines suggest a 30 day course of oral antibiotics. However, there have not been any studies to prove that this is effective. Large scale patient surveys show that short term treatment fails for over 90% of patients with chronic Lyme disease.
7. There are 12 strains of borellia that are known to cause Lyme disease. Standard serology only tests for one.
8. Lyme disease transmission might not be limited to tick bites. The bacteria that causes Lyme disease, Borrelia burgdoferi, has been isolated in fleas, mosquitoes, and mites. New theories suggest transmission could take place through placenta, contact with breast milk, blood, and saliva.