Support Kayla’s Ongoing Battle Against Lyme

A Note from Stephanie (the Organizer):

Hi everyone,

My name is Stephanie, and Kayla and I have been best friends since preschool. If you’re reading this, chances are Kayla might also be one of your best friends, or maybe this was sent to you by one of those friends. For those of you lucky enough to have her in your life, you know Kayla to be the most loving and reliable friend a person could ask for: the one who always reaches out to celebrate your birthday, who remembers all of your favorite moments together, and who will laugh or cry with you whenever you need someone to lean on.

Kayla’s life has been put on hold since she first became sick with Lyme disease and various co-infections more than 6 years ago. Many people have seen Kayla’s journey from an outside perspective, but few know about her daily struggles with severe pain and fatigue, isolation, and all of the hidden costs (time, energy, money, and so much more) that come with recovering from a disease like this.

If you are able, I hope you’ll support Kayla in her current journey to access new treatments that could help her get her life back. These treatments are extremely cost prohibitive and not covered by insurance. I know she is so grateful for the community of people who love and support her, and she could really benefit from this community rallying around her right now. Please read on to hear more from Kayla about her story and her goals, and thank you for being here!

Note: If you would like, you can also donate to Kayla directly via Venmo: @kayla-seigelstein

Kayla’s Story:

Thank you for coming here to read a little of my story. When I was 23, I was diagnosed with Lyme disease, Babesiosis, Bartonella, Rocky Mountain Spotted Fever, Ehrlichia, and Mycoplasma, to name the main tick co-infections. All of these came from one single tick bite that I never saw or had any indication I was bitten. I still could not tell you when or where this happened. For years prior, I was experiencing what doctors diagnosed as “viral infections” and they suggested treating my symptoms with “rest and hydration, it’ll go away.” Nausea, weakness, lethargy, night sweats, abdominal pain, cognitive dysfunction, short term memory loss, word confusion, shortness of breath, orthostatic hypotension, encephalitis, inflammation of the body, heaviness, light and noise sensitivity, severe fatigue, headaches and joint/muscle pain like I had never experienced before.

In March of 2018, I was living in Maryland working full-time as a healthcare recruiter. When I became sicker than I had ever been, I had no choice but to return home to New Jersey to be taken care of by my family. I was completely dependent on others for everything. I left my health care recruiting job and began, what I didn’t know at the time, would be 6+ years of battling these diseases.

Over the last 6 years I have done the following to try to get better. I had a peripherally inserted central catheter line (PICC) for 15+ intravenous antibiotics for 1.5 years and took 22 more oral antibiotics over 3 years. I have seen an internist, infectious disease doctors, a cardiologist, a hematologist, a neurologist, a rheumatologist, a neuro-psychologist, psychiatrists, a chiropractor, an acupuncturist, a genealogist, a physical therapist, nutritionists, naturopaths, a neuro-opthalmologist and psychologists. I have traveled to Virginia, New York, Pennsylvania, Connecticut, and Colorado to see doctors. I have used magnets, a rife machine, had energetic testing, had reiki healing, enemas, daily baths, meditation, saunas, cryotherapy, mindvybe technology (vagus nerve stimulator), transcranial electrostimulation (tCES), and neuro-optimal feedback. I have had MRIs, sonograms, brain spect imaging, cardio-pulmonary exercise testing, weekly lab work, iron infusions, and B12 shots. Many of these treatments I had never heard of, but I am desperate for answers and continue to hope for any sign of improvement.

Kayla’s Progress:

My life has been on hold since I was 23; I am turning 30 in July. There has not been one day in the last 6+ years where I have been symptom free. I have continued to experience severe body pain and brain fog. I have never felt completely cognitively clear or sharp, had a healthy gastro-intestinal system, or felt truly awake or alert. My body and limbs feel like they are filled with dried cement, and sometimes it's very difficult to move. Exhaustion doesn’t even begin to touch on how I feel - I become unable to function unless I let myself sleep. My ears are sensitive to everything, my head feels like it is being confined by rubber bands, and I have difficulty with memory and comprehension. I have suffered from depression. I list these not to complain, but people are constantly asking “how do you feel?” It's not that fun to actually tell them. This is an invisible illness, so you can look at me and think I look fine, but in reality I am suffering from all of the symptoms listed, and unfortunately more.

I have lost myself in many ways over the years - my identity, my personality, my spirit. When others tell me they miss me, I think how I miss myself too. Lyme disease and co-infections are isolating. I spent close to three years living in my bed rarely leaving the house, and when I did, I would need to sleep for hours to barely function again. I still have to rest after the shortest of outings. Being ill is a full time job and disallows me to keep up with others and life in general, since all I have energy for is for what is right in front of me.

The good news is that I have made progress, especially in the last 2.5 years, with Dr. Letellier Smith’s treatments (please see below). I am so grateful to be able to walk independently again with improved peripheral vision with Dr. Padula’s treatments (please see below) and accomplish daily tasks. Even when I am in significant pain and can barely function due to exhaustion, I am fighting on. I grieve for the person I once was, but I have not lost hope in myself or faith in my body. However, getting well requires money. Over the last 2 years, I have been caring for dogs to help pay for my medical expenses. I have loved working with dogs, but my income from this does not even begin to cover my medical expenses; it gets me through some days but I am always behind.

Kayla’s Goals:

I have come here to ask for help because there are new doctors I would like to see and treatments I want to receive, such as ozone therapy and other IV therapies. These can be provided at the Morrison Center with Dr. Tao (please see below). I also am very interested in and hoping to go to a facility that offers hyperthermia treatments in addition to Lyme programs. This is provided at Clinicum St. Georg in Germany, Lyme Mexico in Mexico, and Sanoviv in Mexico (please see below). Chronic Lyme disease and co-infections are not recognized by the CDC and insurance companies as legitimate diseases, so the treatments that I am hoping to pursue are not covered by insurance. I believe with all of my being that I can get well, work a full time job, and be the best and healthiest version of myself.

Here are the doctors where the money I raise may be used for appointments, treatments, therapies, supplements, bloodwork, and testings:

I learned at a young age that life doesn’t always go the way you envision. When I was 23, I was growing in my career, taking advantage of the city I lived in, traveling and BEING a 23 year old. All of that changed too quickly. I will continue to do everything in my power to get my life back, to find myself, and to be healthy once again.

For additional information regarding chronic Lyme, I invite you to click on the links below:

Thank you all for reading and being there for me. Please reach out if you’d like to chat or have any resources to share.