Help Nicole Beat Lyme

It’s been 20 years of good days and bad days…

 

Years spent in and out of hospitals for weeks on end with what started with severe back pain and has turned into unbearable spinal and joint pain, tremors, debilitating fatigue, muscle pain, migraines, numbness and tingling, nerve pain and weakness, heart palpitations, difficulty thinking, memory loss, vision problems, ringing in the ears the list goes on and on.

 

At the time Nicole’s symptoms started, Nicole was a vibrant 8 year old girl with a passion for figure skating, soccer, swimming and we knew she was going to bring so much love and light into this world as she continued to grow but her future suddenly became unclear as these strange symptoms developed and worsened.

 

There was a time Nicole had a bright future in competitive figure skating, soccer and swimming, she saved my life while swimming in our backyard pool when I had an epileptic seizure and was drowning. I may not be alive today if Nicole hadn’t utilized what she had learned during swimming lessons at the young age of 12 and she received a rescue award of merit for her live water rescue. We as parents could not have been more proud of our daughter and what her future was going to look like.

 

Nicole has always had a kind heart, a smile that will light up any room. The first person to offer others help- she would give the shirt off her back to anyone in need. A girl with a heart of gold, extremely ambitious, tenacious with so many dreams and goals for her future which we had no doubt she would accomplish. We always knew Nicole would go on to do big things with a huge dream of changing the world and making a difference.

 

At the young age of 8 years old, life drastically changed for Nicole. Severe pain flares in her low back is what landed her in and out of local hospitals and eventually got so bad we spent weeks and months on end at the Sick Kids Hospital in Toronto. Every time Nicole was admitted we were told all different things by teams of doctors that were seeing Nicole on a regular and daily basis. We were told Nicole had a rare form of cancer, that she would be in a wheelchair by the young age of 20 years old, that she had an auto-immune disease like lupus or rheumatoid arthritis. At one point one specialist felt that Nicole had a very rare disease that only one other person in the world had at that time. The only consistency we heard through the years of her battle was “over time, whatever this is will fully present itself.”

 

By the time Nicole turned 18 years old she had aged out of the care of Sick Kids in Toronto and was transitioned to a pain specialist at McMaster to try to control her pain and give her some enjoyment and quality of life. Through the years she was referred to auto-immune disease specialists where they would do drug trials of biologic medications but the outcome was never positive leaving us all hopeless and helpless- we knew there was something so much bigger going on with our daughter.

 

 

Through all of this Nicole tried to live as normal of life as possible all considered. All she ever wanted was to be like all the other kids, she missed out on many things through her school career but she never stopped fighting for a normal life and never let her illness stop her from pursuing her dreams.

 

In late 2019, Nicole met a local chiropractor who had similar symptoms and felt very strongly after only one visit that she had all the symptoms of Lyme disease. A disease that the countless specialists Nicole had seen had never considered. The words “Lyme Disease” or the thought of testing for it was never in their vocabulary when it came to Nicole’s health. Living in Ontario, one of the highest risk areas in Canada for tick borne diseases, Nicole grew up playing outside, hiking, etc. But unfortunately, as with many other lyme disease patients, the Ontario lyme disease test came back negative. We came to learn that there are high numbers of false negatives with our Ontario lyme testing and that Canadian testing is only accurate for a short period of time immediately after contracting the disease and in Nicole’s case it had been many years and we should consider paying for more advanced testing in the United States.

 

At that point, her chiropractor suggested starting with a simple urine based lyme test in which would be sent to Colorado for testing- it was a good starting point and less expensive than other forms of testing. Nicole went ahead and sent the sample off and we impatiently waited for the results.

When the results came back and the test was positive we finally had found the answers we had spent 18 years searching for. It was an unforgettable day full of mixed emotions- happiness, sadness, fear, anger, every emotion imaginable we felt that day.

 

The next step was to do more detailed testing through Armin Labs in Germany, a lab with results recognized world-wide and would be able to tell us a lot more about the co-infections and co-viruses that ticks carry and transmit. Nicole’s testing came back positive for late stage Lyme disease, several co-infections of lyme disease as well as co-viruses along with other genetic disorders.

 

Nicole was then referred to start working with a lyme literate naturopathic doctor in Fonthill, Ontario where she started a long course of oral doxycycline- an antibiotic typically used to treat lyme disease. Nicole also continued working with her chiropractor to do as many holistic treatments as possible. He also recommended she seek out of pocket treatment in Toronto. She then began her journey of 10-pass ozone blood treatments and vitamin IV therapy for 33 weeks, 2 rounds of stem cell therapy infections, prolotherapy injections, spinal freezing, absolutely everything she could find to help with lyme disease and the symptoms she was experiencing.

After several months of doxycycline, Nicole’s health began to decline significantly. She was nauseated and vomiting daily, she was grey in colour and none of the treatments she was doing were providing relief or a positive result in her condition.

 

During this time, Nicole researched various doctors in the Ontario/Canada area that had been known to be treating patients with Lyme disease. She had all her doctors send referrals to various different doctors, she called daily, faxed letters begging them to accept her as a patient but was never able to be accepted as a patient. After all these years of searching for answers we finally had them but getting help in Canada seemed so far out of reach if not impossible.

 

By December 2020 Nicole’s symptoms had never been worse, she was at one of the lowest points in her journey and the only way she knew how to explain how she was feeling was by telling us daily “I feel like I’m dying.” We knew she couldn’t go on like this.

Nicole had spent months researching treatment for late stage lyme disease, she spoke with other patients, looked into treatment methods recommended by ILADS (International Lyme and Associated Diseases Society) and found a highly recommended lyme literate doctor in Washington, DC- The Jemsek Speciality Clinic.

 

Just days before Christmas Nicole and her dad made the long drive from Niagara on the Lake, Canada to Washington, DC to have Nicole’s initial appointment. For the first time in her life, she finally felt completely heard and understood by a medical doctor. She was immediately enrolled to become an IV patient and in a few short months once they were able to stabilize her body a bit more she would embark on her IV antibiotic therapy journey for late stage lyme disease- a mixture of IV antibiotics, oral antibiotics and herbal vitamins and supplements in specific combinations.

 

Feb 12, 2021- Nicole and her dad made their second trip to Washington, DC to have her Central Line Placement surgery. Nicole had a picc line placed in the right side of her upper chest in order to run IV medication and fluids for treatment. And just days after surgery she was back at the Jemsek Specialty Clinic office doing her first office “drug trial” and picc line maintenance

training. We finally felt like Nicole was on the right path as she adjusted to her new way of life and was ready to embark on an 8-12 month IV treatment journey. Little did we know what was to come next…

 

A few months into Nicole’s IV treatment journey she became very sick and ended up at our local hospital in Canada with severe stomach pain. Ever since Nicole finally got diagnosed with Lyme disease we started to realize that Canadian doctors and hospitals did not take this disease seriously- she was dismissed, denied care, pushed to the back of the line and just blatantly mistreated. It came as no surprise when Canada would not provide her with proper care of several surgeries that were truly life or death.

 

Nicole’s IV treatments came to a drastic halt on and off for the last 2 years as she underwent 5 unexpected surgeries in the United States after being denied care in Canada numerous times at hospitals all over the Niagara Region.

 

Nicole had emergency surgery in 2021 to remove her gallbladder that had become extremely diseased and toxic from the lyme disease being untreated for so many years. During that surgery Nicole was diagnosed with an adhesive disease, meaning- the more they operate the more scar tissue her body will build. Very shortly after her gallbladder removal surgery, Nicole stopped being able to eat completely and was yet again denied help in Canada. She was forced back to the United States to seek help where she was then diagnosed with a rare disease called SMA Syndrome (Superior Mesenteric Artery) which is defined as compression of the third portion of the duodenum between the abdominal aorta and the super mesenteric artery. After numerous tests and procedures it was confirmed that Nicole had SMA syndrome and the first course of action would be surgery to place an NJ (nasojejunal) tube in her nose, down through the stomach directly into the jejunum (small intestine) in order to “feed” her and help her gain weight as she was drastically losing weight and literally starving to death at 66 pounds.

 

After 2 months of NJ tube feeds being unsuccessful we were once again at a loss, Nicole was starving and unable to gain any weight with her NJ tube and ended up taken to hospital in Canada by ambulance after passing out on the kitchen floor due to lack of proper nutrition.

She was seen by a Canadian GI specialist who refused to be of help and told us “there’s nothing we can do, go back to the united states.” We were beyond frustrated and hopeless, how can a doctor look at our starving daughter and deny her proper care?

We gained temporary hope for a few days when a doctor agreed to give Nicole the nutrition she desperately needed through a picc line in her arm, called TPN feeds. We quickly lost hope when they cut her off after 3 short days and again told us to seek help out of country.

 

By January 2022 Nicole and her dad were back in the United States seeing another specialist to seek help for SMA syndrome where Nicole had yet another surgery to place a G tube directly in her stomach for feeding as well as bowel and intestinal cutting during surgery.

Nicole had a G tube for 2 months until she gained enough weight to make surgery to finally fix her SMA syndrome- Nicole underwent another surgery to remove the G tube and had a duodenojejunostomy.

 

The duodenojejunostomy surgery held for 8 months and completely fell apart causing her intestines to collapse and intussuscept with her bowel requiring reconstructive surgery to fix the original botched procedure.

 

After several tests, and a long search for a surgeon willing to take on Nicole’s complex case, Nicole met with one of the top cancer surgeons in the US (the only surgeon confident enough to take on her case). A week later Nicole had her 6th surgery to robotically reconstruct her GI system to allow her to eat again, but that would not be the last of her surgeries.

 

Just 2 months after Nicole had reconstructive surgery and had healed enough to meet surgical requirements Nicole had her 7th and final surgery to remove an infected mass of scar tissue off of her intestines- another complication from her original botched duodenojejunostomy.

 

Nicole was finally ready to return back to her IV antibiotic lyme treatment protocol- which had been on an on/off basis in between her 6 lyme related surgeries. Nicole was able to successfully complete 7 cycles of IV antibiotics but her last cycle was one of the hardest- she was bed ridden the entire cycle, vomiting and barely able to move. It was heart breaking to watch her suffer so badly. Was this the right course of treatment for Nicole? When were we going to start seeing some results?

As we continued to look into treatment methods we felt that Nicole had done everything possible to give IV antibiotics the best shot she possibly could but her body could not continue with the heavy antibiotics with no sign of actual recovery. Unfortunately, there is no guarantee of success with antibiotics and late stage lyme disease.

We truly feel that we chose the best method of treatment for Nicole at the time and we have seen some improvement with treatment but we feel strongly that there are better methods available with higher success rates.

 

The next part of Nicole’s journey will take her to a treatment centre in Germany or Florida to seek an individualized treatment plan with a hybrid of conventional and alternative medicine that promotes holistic healing for the patient while addressing underlying infections and toxicity.

 

Canadians are left with no choice but to travel for treatment and pay anywhere from $75,000-$100,000 just to help treat the disease. After that they have to continue with weekly treatments (also not paid for by Canadian health insurance) and costly supplements to take daily.

 

20 years ago, while playing at a friend’s house on the Niagara escarpment Nicole had a bite on her left hand unlike any other. After taking her to the doctor we were told it was nothing to worry about. Looking back, Nicole had the typical “bullseye” rash but never actually removed the tick. After years of research we have come learn that 50% of people with lyme disease never remove the host or even remember being bit- this is due to the fact that a ticks saliva contains an anesthetic property.

 

20 years of pain, suffering and trying to convince people it wasn’t all in her head. 7 lyme related surgeries, approx. $350,000 USD spent out of pocket we have come to the point we have to ask others for help. Any help we can receive is so greatly appreciated! Even just as simple as sharing Nicole’s story as we try to spread awareness for Lyme diagnostics and treatment in Canada and help others find answers as well!

 

Thank you kindly,

 

The Legros Family