Tara and I have been besties since grade 6. We are both Canadian. While I live in Florida now, she and her family live in Canada. We spent every summer together for years at my family's cottage. We were inseparable.
I am so grateful for our friendship and those memories at the lake, and the memories we continue to make, especially with our children becoming so close when we see each other every year. Her son is like a big brother to my girls.
You would never know Tara has Lyme Disease. She is the most positive, outgoing person, who cares more about others and is always ready to laugh until it hurts. We have laughed so much together; this is what I love about her.
It broke my heart when she started telling me about her symptoms and what she is dealing with on a daily basis. She works harder than any one I know, and takes care of her family as if she is in perfect health. She is a fighter. She needs to beat this disease. She will beat this with your help to get the right treatment.
We just celebrated her 40th birthday together and I witnessed for the first time, one of her neurological attacks. It was scary and I said, enough! We need to get you treatment, and if money is the issue, we can see if others will help.
Please help her by donating any amount. A little adds up to a lot and when she can get back to a full healthy mother, wife, and friend, I know she will continue to help others who suffer from Lyme Disease.
Please read her story from her own words below. It certainly moved me and touched me greatly.
I’m Tara, and this is my story of Chronic Neurological Lyme Disease.
I remember the first time everything went black. I thought I was going blind. I screamed for Trevor, my husband. Eventually, after what felt like forever, I could see again.
There were other symptoms. There are other symptoms.
I have a laundry list of symptoms: chronic pain in my joints and muscles, ringing in my ear, tingling and numbness in my hands and feet making them feel like they’re on fire, tumours in my cervix, hormonal imbalance, total adrenal burnout, twitching and cracking in my neck, brain fog, memory loss, …the list goes on. These symptoms, alone or in combination - and there really are too many to count - are a daily part of my life.
Six years ago I had my first TIA, or transient ischemic attack. Basically a mini-stroke. At the age of 34.
I remember crawling from the bedroom to the living room with my son Kensington in tow. We were moving and I had to pack, but I couldn’t walk or stand. I was so lightheaded all I could do was lie on the floor.
I can mostly deal, and I have been dealing with these issues, even though I usually feel about a 2 or 3 on a scale of 1 to 10, but lately something else has been occurring that has made my life nearly unbearable from a health perspective. Since May I have been suffering from daily neurological attacks.
These attacks affect my balance, my sight, my speech...everything, really, and they have been beyond debilitating. And really, really scary.
This is me with my husband and son:
My neurological attacks, as we refer to them around here are a layman’s term for a system of symptoms recently identified in me and known as “cortical spreading depression, and ionopathy instability.”
So you can see why we call them neuro attacks.
Since the first onset of symptoms in 2005 I have seen many doctors and other healthcare professionals. I have been tested for and treated for so many illnesses. I’ve lost track of how many tests I’ve had: MRIs, CT scans, EEGs ECGs and so many others. Countless blood tests. Every doctor I saw thought I had something else, or they were left as confused as the next.
A naturopathic doctor identified the adrenal burnout and thyroid issues, and presented me with the longest restricted foods list she had ever seen. She asked me how I got out of bed each day. My answer? Caffeine.
In June of this year through what I deem a miracle, I finally discovered what has been plaguing me all these years. All of my symptoms under one umbrella. It seemed impossible, but I took a test for Lyme disease - yes, Lyme disease - provided on the Lyme Ontario website. Answer the questions, and if you score over 41, you have a high probability of having Lyme disease.
I scored 106.
I finally had my answer, something I could name: Chronic Neurological Lyme Disease.
The moment I got my official clinical diagnosis, I couldn’t stop crying. Relief, fear, excitement; it was a combination of all these emotions and more. It had been such a long haul, and now there was light at the end of the tunnel.
And while I can now name what I am dealing with, treating it is a whole other story.
Once the dust settled and I found some options for treatment, the financial reality smacked me in the face. Where would the money come from?
I spoke to someone who runs a non-profit organization in the US. He called me a fighter, said he could hear it in my voice, that I would be ok, that I would find the money for treatment.
There are only two centres in the world performing a hyperthermia Lyme protocol that involves raising the body’s core temperature to 42 degrees Celsius in an attempt to kill the Lyme bacteria and any infections associated with it. The course of treatment runs for two weeks in a facility in either Mexico or Germany and costs roughly $20,000 USD.
Link to the Clinic in Mexico:
Link to Klinic in Germany:
As I prepared to find a way to raise this money for treatment, one of my best friends who has been a constant support - helping me with research and finding information - discovered that her naturopath recommended something called Cold Laser Therapy for Lyme patients. I immediately researched this protocol for Lyme and discovered it has also been used by many doctors in the US.
I was also able to find an amazing doctor in Ontario who is also a Lyme specialist. (Recommended by Lyme Ontario) My current goal/treatment plan is to have her and the US doctor work together to treat my Lyme.
Right now I am focusing on raising funds either for the Cold Laser Therapy (a three-month protocol in Boston; Link to Clinic: http://lymelasercentersofnewengland.com/ )
or the hyperthermia treatment at the Lyme Center in Mexico or Germany.
Both my Naturopath and the doctor in the US have advised me that there are no guarantees; that it will be a long road, a minimum of 12-18 months to fight all the diseases that Lyme has infected me with. That said, they are hopeful and convinced they will be able to treat my neurological disorder and give me relief.
Through all of this, Kensington and Trevor have been my everything.
Even as recently as yesterday I knew something was wrong and was doing everything in my power to stand, and to not fall over with Kensington next to me. As I began to stutter, he said, “Mum, you’re having a neuro attack. Don’t talk, just breathe deep, and let’s sit down.”
When we finally made it upstairs he got me a cold cloth like he’s seen his dad do so many times. My speech was garbled, I was bawling my eyes out (from sheer guilt) and trying to say “I’m sorry.” He simply told me to breathe deep, and that there’s nothing to apologize for.
He is 8 years old.
We refer to my garbled language as “alien talk” because I don’t want him to be scared. Because he was present for my last TIA (mini-stroke) and that was more than terrifying for all of us.
During the last one, I wasn’t sure if it was a real stroke or not. I wasn’t sure if I would ever be able to speak again. I was terrified I would die. And, if these neuro attacks and TIAs continue, it’s a reality I could face.
As difficult as it’s been to share my story with, what feels like the entire world, it’s possibly one of the best things I’ve done. The emotional support and encouragement I have received for both me and for my family has been incredibly heartwarming.
I’ve also been able to connect with other Lyme survivors and have spoken to people who have had success from the same treatments I’m seeking. They give me hope and hope is everything.
I do need your help. Any amount you can donate to help me reach my goal is appreciated. And, if you happen to be in the know and are familiar with any programs or grants I could potentially apply for, please send the information along.
I have a long road ahead of me, and I am so grateful to all of you for taking the time to read my story and support me in my search for relief from this overwhelming disease.
Please follow her journey now and when she begins treatment:
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