help kali treat lyme disease

Hi :) My name is Kali, I'm a 23-year-old graduate student in Chicago with a recent diagnosis of Chronic Neurological Lyme Disease and co-infections, including Babesia and Bartonella. I cannot stress how hard this is for me to write, as I've been trying to keep my situation under wraps for a bit, but I have finally come to the point where I can accept a loss of pride if it means getting a bit of help. I’ve always considered honesty as one of my best (and worst) qualities, and this was the first thing I've felt inclined to keep hidden, so before I express what I am asking for help with, I’d love to tell a bit of my story.

About a year ago, in January of 2022, I started feeling so off, there's no better way to say it. I had kept a pretty healthy lifestyle my entire life, and my health was just starting to reach its peak as I was finally out of college, cooking healthy meals, and working out almost daily. I had been feeling great for a while, but it only took a few weeks of crazy fatigue for me to know that something was deeply wrong. A couple of months of debilitating abdominal pain and a stupid amount of naps every day went by before I finally hit a point where it was obvious that things were looking a bit more daunting than before. By the end of March 2022, on top of previously said symptoms, I was losing my eyesight, motor function in my hands, spatial awareness, hair and short and long-term memory. Essentially, if you randomly pointed to any part of my body, there was likely something wrong with it.

As symptoms steadily racked up, I started having 1-2 “episodes” a week that presented symptoms similar to a non-convulsive seizure or ministroke. For about an hour or two I’d forget how to walk, respond to any external stimuli, speak, understand others as they spoke, and then they’d end in a blackout. It was after my second of these harrowing moments that I finally headed to the ER at Northwestern. I was kept there for 2 days of testing and discharged without a diagnosis, but with so many specialist referrals, including neurology, neuro-psych, internal medicine, etc etc etc. It felt like so much at the time, but I had no idea that this would only be the beginning of the lifelong battle I was about to embark on. In the months that followed, I didn’t talk the same, my responses to all stimuli were delayed, and I had almost no ability to type or write legibly. After applying for disability at school to take my finals orally, by the grace of some being much higher than me, I had made it through my first set of graduate school finals and was on a flight home within 24 hrs of completing them. A bit of luck struck when my parents were given a Lyme-literate doctor recommendation from a friend that expressed how similar my symptoms were to his. After a month in my parents' care, I flew to New York to be seen by a Lyme Disease Specialist, where I was immediately diagnosed with Chronic Neurological Lyme Disease. A few confirming tests later, I was finally officially diagnosed and began treatment with the start of 3 antibiotics.

Since that day, May 25th of 2022, I have circled through 16 medications varying from oral to injectable, steroids to herbs, etc., often taking around 5-7 different ones at one time. I'm currently on 8 medications, one of which is a penicillin injection with a 1.5-inch needle that my loving roommate administers for me, thanks Erin :). I had to learn much too quickly that I now had a disease that was not for the weak (sadly me), or the alone (luckily not me.)

Before I go into where I am currently at in my Lyme journey, I’d like to speak on some of the bigger upsets I’ve experienced throughout this past year as a result of this illness. Here we go, in chronological order:

Amongst the many other upsets I’ve experienced throughout this journey, those bigger turning points have brought me to where I am today. Meds no longer keep me awake, I can’t walk up a flight of stairs without seeing stars or having to catch my breath, and my eyesight is still progressively declining, leaving me with my 6th eyeglass prescription in 11 months. My motor skills have not fully returned, my toes and the tips of my fingers are without feeling and my body is unable to regulate its temperature- u see me sitting inside sweating through my clothes as my hands, feet and lips turn a pale purplish-gray. My memory has declined further, holding only a few moments each day before completely leaving by the next morning, and the only thing keeping my hands feeling well enough to even type this right now are the two-three acupuncture appointments I attend each week.

My relationships have changed, my appearance has changed, my ability as a student has changed, my ability as a human has changed, and my love for life is no longer as strong as it once was. With only 2 semesters left at the time of my diagnosis, I have dragged myself through each day to finish my master's, but my will and determination are dwindling with each new piece of this puzzle that is forced upon me. It has been awful to live with all of the aches, the mourning of my life a year ago, and the fear for the life I have ahead of me. Each treatment plan within the past year has chipped away at the issues, just not fast enough to keep the disease at bay. It's time that I seek a more intense treatment, so here I am, very humbly, asking for help getting onto a path for a second chance at the life I had.

The Lyme Center at St. George Hospital in Bavarian Bad Aibling Germany has invited me for a prolonged stay for Lyme Disease treatment. The average length of treatment they administer includes a two-week ICU stay. With consideration of the extent of my illness and test results, I have been invited for 5 weeks of treatment. This treatment holds multiple attacks at the disease such as blood washing and antibiotics, but most importantly includes a series of whole-body hyperthermia treatments, where my body temperature would be raised to about 106.9-107.2 °F and is held there for a few hours to burn off the disease. Though so scared of this reality, the life I live now is not sustainable, it is too heartbreaking, and filled with more pain and disappointment than I could ever fully express. It feels as if I've spent the last year stuck inside someone else's body. The only thing I’m afraid of, more than the treatment itself, is living my life, the way I currently am, forever.

The lack of research and acceptance of Lyme Disease in the US is a topic I could speak on for days, but to make a long story short, there is almost absolutely no insurance coverage for the medications, doctors, and treatments I have had to go through to keep this ounce of life in me. This of course hasn’t been easy, but I now have a few months to attempt financially preparing for the priciest treatment thus far. Including the cost of treatment, a personal room in the hospital for 5 weeks, and my family renting a room nearby in case of emergencies, the total cost of this life-altering treatment is looking to be about $55-60k. I have no intention to be able to get this fully covered, but any help at all would be so much more than what I'm able to bring to the table on my own right now. I’m praying this can get into the right hands, and that the financial burden of this disease is lightened, even if only a bit, so that I can spend more of the small amount of mental space I have left on healing.

Thank you for hearing the super-long cliff notes of my story, I deeply appreciate all that have given my situation even a second of care, the love and support I've been given is the main thing keeping me going. That and the idea that this treatment, god willing I can attend and be safely treated, can put me into remission, and I will be able to get my life, my art, my brain, and the love and light in my eyes back.

Thank you again for being here with me for this phase of my life, even if only momentarily.

All of my love,

Kali