Aly Shwedo's Medical Fundriser

For: Alexandra Shwedo
Woodstock, GA
Organizer: Aly Shwedo
Aly Shwedo's Medical Fundriser (Alexandra Shwedo)
of $20,000 goal
52% Complete
Raised by 208 donors

The Story

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.

Fundraiser Updates

Posted on June 6, 2017

Posted on June 6, 2017

It has been a long time since I have updated all of you on how things have been going health wise! To start: I have wonderful news! Things are starting to look up!

I last saw my doctor in Seattle 3 months ago. I had two weeks of intensive treatment. Every day I was getting IVs, injections, treatments for chronic pain, and more. Going through so many different therapies in such a small amount of time is difficult: you are at the mercy of your body and in such a busy state, your symptoms feel ten times stronger. While I was up there, I was feeling pretty sick, but as I adjusted to my new medication protocol, I really seemed to hit my stride once I got home!

My body was pretty worn out. The past three years have been hard, as we have been treating central nervous system infections with multiple antibiotics. My microbiome had been wiped out and I was exhausted. I am now happy to say that we have made a conscious decision to transition away from the "fight fight fight" treatment perspective into more of supportive one. Finding medications that support and allow the immune system to fight infections rather than use antimircobial ones is a game changer. We are finally rebuilding.

I am feeling better and doing better.

It is hard to notice healing when it is done slowly. There was a time in my life where I was in bed all day, every day. I couldn't get up without needing help from pain or fainting. I still have days like this, but they are so far between that it does not upset me, as I now know that they are just part of the process. I am more active, working on setting up a business from home (more on that later!), playing with my dogs, rebuilding strength through yoga, and enjoying time with my family. Life is much better now.

With these good things, I am still struggling with some. My heart condition has begun to flare up again with chest pains, heart palpitations, and PVCs. A fast heart beat will make you more tired, and the medication to slow it down can make you more tired. I still battle incredible amounts of fatigue each day, that a full nights sleep cannot erase. I have a lot of pain. There is a bulging disc in my neck and the pain is present nearly all of the time, occasionally causing migraines and blurred vision. With the long term damage to my nervous system, I have a lot of nerve pain, which shoots up my legs and makes it feel like bugs are crawling and biting my skin.

These things may seem big, but they are oh so small compared to how I was even a year ago.

I am not yet able to drive or work, so I still have to ask for financial help. Even though I am better, I am still in active treatment and need help. My mom is a public school teacher and works very hard to help me. I am so grateful for everything that she, and all of you that have supported me, does for me. Without your help, I would still be stuck in bed, at the mercy of this disease. I am still trying to figure out how to repay your kindness- look out for that in the future!

Currently the cost breakdown of my medical bills look like this:

•1 hour out of network specialist appointment: $240
•One IV (my insurance does not cover any IV medications): $175
•Appointment with a chronic pain specialist (the most helpful!): $150
•Dose of immunotherapy injections: $60
•Monthly cost of oral prescriptions: $40
•Cardiologist/Neurologist/Orthopedic co-pay: $10

Anything you can do to support me through the last stretch (fingers crossed!) of this disease, is immensely appreciated. Sharing my fundraiser gives me a well needed signal boost and donations are greatly appreciated. Thank you always! ❤️

Posted on November 24, 2016

Posted on November 24, 2016

It has been 9 months (!) since I have made an update to my fundraiser. First, I would like to thank all of you for your love, prayers, and support.

I last saw my doctor in March. I had been doing pretty well and making improvements under her treatments in care. My POTS (heart/nervous system disorder) is better managed, my pelvic pain is practically gone, my seizures are nonexistent, and my fatigue is improved. I have been doing immunotherapy and found wonderful relief through these, although short lived and spread out as I have to follow the life cycle of my T-cells (7 weeks) for this treatment.

I recently had a surgery on my knee due to a ligament tear and a genetic mutation. It took 7 months of battling my insurance coverage on this surgery, and ended up costing $600 out of pocket. The surgery has helped so much with my pain and physical therapy is helping me stay active. I have regained use of my left leg.

Because of a lack of funds, I haven't seen my doctor since June. This has been a difficult decision to make, as I am supposed to see her every 3 months. My symptoms have been coming back. I would love to be under closer and more directed care with her so that I can have a more precise treatment. I fell into a deep depression about my health and financial situation recently, and that is why I have not been updating. I have been in one of my lowest places and at a loss for words. I have scheduled another round of treatment in a few months. The costs of doctors appointments, medications, blood testing and imaging, and IVs will cost around $5,000 out of pocket. Any help through sharing, donating, and praying is greatly appreciated!

Posted on February 27, 2016

Posted on February 27, 2016

Hi everyone! It has been a few months since I have updated and I wanted to share with you all how I am doing since my last round of treatment. This time it is good news! I am finally experiencing some relief. I have a bit more energy and my cognitive function has improved! So it is safe to say that I am confident that this is the right path for me now that I have slight improvement. However, relief is not without symptom shift, and my pain has become much worse. My migraines are almost always constant along with siatic nerve pain in my back and legs. While the pain is difficult to deal with, I am trying to take this as a sign of things changing and trying to take advantage of my good days. Two weeks ago, I went to Arabia Mountain and walked maybe 1/4th of a mile. That would have been impossible for me just a few months ago. I don't want to be premature in announcing these changes, as healing is a fragile process which can come and go at any time. While most of my time is still spent in bed, I want to emphasize my optimism and the progress I've made.

At the clinic, I did IV nutrition and vials of artesunate, an anti-malarial drug used treat Babesia. I tolerated this drug, so we decided it would be best to continue doing these intra-muscular injections at home. Five weeks of the injections cost $811. I also did a food intolerance test and will be removing most fruit from my diet. We did my third dose of LDA, or low-dose antigen therapy, for food allergies, inhalants/toxic mold, and the varicella virus, which are all a burden on my immune system. I am continuing to treat parasites at home.

I also had a dental scan to check for infections. Currently, it looks like there are, at minimum, two surgeries in my future, but I am trying to not lend weight to this until I meet with the oral surgeon in June. There is also a possible hole in my sinuses, possibly caused from improper wisdom tooth extraction. I am not sure where this will lead me, but I will next time I meet with the doctors.

Again, I would like to thank everyone for sharing and supporting, your prayers and thoughts mean the world to me. Thank you everyone who has taken the time to learn more about Lyme disease and ask me how I am doing.

All the best,


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