Help Elena Fight Lyme disease and Reclaim Her Life

Dear Friends and Family,

This will be long but I feel like I am obligated to tell the full story to make it clear and understandable to those who had no idea what has been going on in our lives.

As I write this, I am approaching 8 years of living with a multitude of symptoms that overtime progressed from mild to overwhelmingly severe and started after the birth of my first son with puzzling neurological symptoms that lasted for over a year and a half and ultimately went into remission giving me hope that they would never come back but was I wrong.

5 years ago I was a what is considered a healthy and happy individual. I was able to hold 2 jobs (a full time and a part-time), enjoyed regularly attending the gym, riding a bike, reading, spending quality time with my oldest son and staying busy and productive. Nick and I got married and I was expecting, we bought a house, and were building a joyful, blissful, exciting future. I felt great and thought that everything would be relatively smooth sailing. I felt healthy and happy.

Fast forward to today…for nearly 5 years since the birth of my second son reactivated chronic Lyme disease and coinfections Bartonella and Babesia, viral infections of EBV, CMV, HSV complicated by mold and heavy metal toxicity I have suffered ever-worsening and spreading debilitating pain in the face, head, neck, and a multitude of neurological symptoms that overtime rendered me dysfunctional and bedridden.

There are too many symptoms to list but some of them are: severe daily head and neck pain, facial nerve pain, POTS (postural orthostatic tachycardia syndrome) causing rapid increase in heart rate upon standing and resulting in extreme dizziness, muscle twitching all over the body and face, tingling, stinging, electric sharp pain in the legs, arms and body, extreme fatigue and post exertion malaise, hearing loss and auditory nerve damage (I can't hold the phone to my ear and have to put everyone on speaker), eye floaters and light sensitivity, piercing eye pain and stabbing headaches, sound sensitivity, heat intolerance and overall temperature dysregulation, gastrointestinal pain and leaky gut, derealization and visual snow and many others.

I am now unable to make any plans, social or otherwise, have no social interaction of any kind with anyone except my husband and my youngest son and phone calls with my oldest son. I had to abandon my home in Nebraska and pull our youngest son from school in order to join my husband on the road due to the nature of his job. I became physically unable to care for my kids and even myself.

I can’t do any of these things without paying the price pain spike or increase in other symptoms : taking, on the phone, in person, or otherwise, sitting for more than about 20 minutes for any reason, whether that is to have a meal or a rare occasion when I have enough stamina to focus on watching something on TV, doing anything that requires near focus for more than a few minutes, including anything with a screen (phone, computer, TV, etc.) or a page of a book, putting make up on, emoting and using the same often nearly cartoonish facial expressions that I have always been known for

I am unable to drive anymore, most days I can't even take a shower due to overwhelming dizziness and weakness. If I do I usually wait for my husband to get home in case I fall or pass out. I can't go inside large stores due to intolerance of fluorescent lights and resulting sensory overload.

This is just a short list of examples of everyday things in life I once took for granted that have become agonizing, exhausting and impossible tasks. Even this text has taken me a week to have it typed up due to inability to sit upright for longer than several minutes without causing an increase in symptoms and pain. Absolutely everything in my life has been starkly impacted by inescapable pain and crippling neuro symptoms .

I have never known anything like this grueling disease that impacts any and all areas of my body including brain and nervous system.

Imagine for a minute not being able to do simple daily things that we normally do on autopilot and take for granted like reading a book to your child, taking them for a walk, having a coffee with a friend, watching an enjoyable movie. This disease has completely stripped my life of any semblance of normalcy, any and all joy and light. It derailed the life of my family and turned it completely upside down.

Before getting to a correct diagnosis I have seen countless specialists such as neurologists, neurosurgeons, ENTs, head and neck surgeons, physical therapists, massage therapists, tmj specialists, regular chiropractors and specialty upper cervical chiropractors. Have had multiple MRIs, CTs, ultrasounds, x-rays, myriad of lab work, lumbar puncture and many more I am sure I am forgetting due brain fog. I have undergone multiple treatments such as nerve medications, pain medications, anti inflammatories, all sorts of supplements, tmj treatments in an attempt to get relief from facial pain not knowing it is not stemming from a structural issue but from a bacteria attacking all systems of my body.

It culminated in my getting a very invasive skull base surgery called bilateral styloidectomy in January 2024 that unfortunately not only didn't help relief any symptoms but left me with lingering numbness and pain on the left side of my face, jaw and neck.

After finally arriving at the right diagnosis in the summer of 2024 due to my own research and the labs confirming positive results for Lyme disease and coinfections I commenced treatment with a Lyme literate provider based in Kansas. Unfortunately treatment heavily based on the use of high dose of multiple antibiotics did not agree with my body and rendered me feeling even worse causing more damage to my GI tract.

I finally found a place that has a very high track record of successful treatments of Lyme disease and multiple other chronic illnesses. They use functional medicine approach to restoring the body without the use of prescription medications. I have contacted past and previous patients and they all confirmed the incredible results and relief they experienced as a result of treatments at the Institute for Restorative Health in Derby, KS. One patient's story in particular impressed me more than others - she lost all feeling in her legs due to Lyme disease and couldn't walk at the age of 18 plus a myriad of other symptoms accompanying Lyme disease. Conventional medicine could do absolutely nothing for her and the doctors were unable to figure out the cause. Within a year of the start of treatment at the IRH she was walking with a walker and within 2 years she was back to normal and is now living a full life, got married and has 2 beautiful children.

The cost of the program is $9800 and includes 2 weeks of intensive hands on treatment at the clinic in Derby, KS, 3 months of remote treatment with regular appointments with the doctor and the first refill of supplements and nutraceuticals. Another $1200 will go towards a 2 week long hotel stay close to the clinic.

The issue that we ran into is financial. Chronic Lyme disease is marginalized and is not widely recognized by CDC and traditional western medicine. As a result insurance doesn't cover treatments and all costs are out of pocket. The past 6 months only of me treating with a Lyme literate NP cost out family $8000 (office visits and medications/supplements).

Everyone who knows my husband Nick knows that he is the most hardworking, caring and giving person you could ever find. He has helped a lot of people throughout his life both financially and otherwise. He has been my only close support circle in battling this horrendous disease. He has been working over 80 hours a week and on top of that caring for our son Jeffrey and me, cooking, taking me to appointments and doing many other things that are part of daily life. I have no idea how he has been able to manage all of these and not break down, but I am eternally grateful for my superhuman husband.

Unfortunately 5 years of treatments and out of pocket costs put our family into a huge financial hole. My husband's retirement fund is completely wiped out and gone (with a huge penalty he had to pay to IRS for early cash in), whatever small amount I had in my retirement fund is gone as well. Credit cards are maxed out from multiple medical expenses. Savings are gone. We are still paying for the surgery I had a year ago and will have to pay for the next several years. All the money my husband is making working long hours goes towards current monthly bills and multiple medical expenses associated with my treatments.

This is why we arrived at a difficult decision of asking for financial help to be able to afford this lifechanging treatment. Difficult because neither my husband not I are used to asking for help. We both have been working since an early age. The fact that I have been physically unable to work for the past 2 and a half years has taken a huge tall on my mental health and one of my biggest desires besides regaining my health and being able to be a mom to my kids and a wife to my husband is getting back to employment.

No donation is too small, whether it is $1 or $1000 they will all be appreciated beyond measure. If you can't donate please share this GoFundMe and spread the word, we will appreciate it no less. I will also gladly take all the positive energy and healing vibes you can send my way.

Please, help me win the most difficult battle I have ever fought - battle with Lyme disease, and gain my life back. Please, help Ruslan and Jeffrey get their mommy back.

Thank you from the bottom of out hearts,

Elena and Nick