Help Jess get treatment for Lyme Disease

Most people have heard of Lyme Disease to a degree, but know very little about the nuances. I’m here to explain the challenge my family is currently facing regarding Lyme Disease, and to ask for your support now more than ever.

My wife Jessica has been plagued by health issues for nearly 20 years on an ever-increasing basis, and due  to a recent diagnosis, we now know that she has been battling Chronic Lyme Disease, and that she’s likely had it for many, many years. How has Lyme gone undetected for so long you may ask? There are many elements regarding the detection, diagnosis, and treatment of Lyme that make it difficult to pin down. 

Most people are familiar with Acute Lyme Disease; this is the more easily detectable version of Lyme in which someone is bitten by a black-legged tick, can sometimes locate the familiar “bullseye” rash mark, and seeks the typical treatment of antibiotics. People who contract Acute Lyme usually recover quickly. A much poorer understood version of the disease is known as Chronic Lyme or Post-treatment Lyme Disease-- with this version of Lyme, someone who has been bitten by a black-legged tick without knowing can experience a vast array of symptoms spanning weeks, months, or even years. The symptoms may go unnoticed, but can flare up due to spikes in hormone levels, stress, illness, etc. Chronic Lyme is a multi-systemic illness that can attack the immune system,and if left untreated, can manifest in a surprising variety of symptoms, including but not limited to the following:

Flu-like illness;
Fever;
Unexplained weight gain or loss;
Headaches, migraines or seizures;
Facial paralysis (Bell’s Palsy, Horner’s Syndrome, etc.);
Extreme muscle, bone, and joint pain (fibromyalgia and/or arthritis);
Chest pain, heart palpitations or irregular heartbeat (Lyme carditis);
Shortness of breath, dizziness, and respiratory complications;
Chronic (and extreme) fatigue;
Mood swings, irritability;
Depression, panic attacks, anxiety;
Inflammation of the brain and spinal cord;
Nerve pain;
Memory loss (short or long term);
Speech difficulty (slurred or slow), difficulty finding commonly used words;
Severe brain fog, confusion, forgetting how to perform simple tasks; and
Continual infections (sinus, kidney, eye, etc.);

This diverse laundry list of symptoms associated with Chronic Lyme makes diagnosing it very difficult for the medical community. In fact, there is wide-spread controversy amongst physicians regarding the existence of Chronic Lyme, which has led to a scarcity in “Lyme-Literate” doctors in Canada, and a healthcare system that does not recognize Chronic Lyme as an “official” disease. 

The method of transmission of Chronic Lyme is also under scrutiny, as some medical experts claim that it can be transmitted both in utero and through intimate activity. 

Jessica is a professional nurse by trade, but due to worsening cognitive functions, and chronic pain and fatigue, she has been unable to continue her profession. This has left us in a tenuous financial situation for years as we work to support our family of four (myself, Jessica, Elora [8] and our son Cole [17]) on mostly one income. 

Since the birth of our daughter Elora, many symptoms have appeared, and as her functioning steadily decreased, Jessica saw many medical specialists and endured many tests. There has been a dramatic increase in pain, fatigue, breathing problems, and cognitive dysfunction (among other symptoms) in the past 6 months.

Three months ago, unsatisfied with ongoing inconclusive test results received by many doctors and long waitlists for further testing and specialist appointments, Jessica saw a practitioner who specializes in treating Lyme. She was given a test for Lyme Disease; she tested positive. Wanting further confirmation, we also sought out a conclusive blood test through a Naturopathic Doctor. Currently there are few accurate blood tests available for Lyme, and the test performed in Canada through our health system is known to have a high rate of false negative results. Knowing this, the test recommended by the Naturopathic Doctor was sent to a laboratory in Germany, and cost $850 out of pocket. She tested positive for Lyme again. The time, energy, and money spent to diagnose the Lyme alone has caused indescribable stress both emotionally and financially to our family. 

Because there are so few “Lyme-Literate” physicians in Canada, there is currently a 2-year waitlist for treatment through our local healthcare system. The treatment offered through this route is a long-term series of intensive antibiotics, which cannot target the Lyme specifically, and therefore causes health implications for the body as a whole. This treatment takes 6 months to 3 years to see results, and most importantly, it does not fully cure the Lyme, but only puts it in remission. Although this treatment is covered by the healthcare system, it takes years to see the physicians and then months or years of damaging treatment to put the Lyme in remission.

A second treatment option is provided through a Naturopathic Doctor or a Traditional Chinese Medicine Doctor; this treatment involves IVs, various supplements, antibiotics, herbal antimicrobials, etc. Although Jessica can begin treatments quickly through this route, it would take anywhere from 6 months to 4 years of treatment to potentially end up in remission. The majority of the cost is out of pocket and very expensive (estimated between $10,000-$30,000 total depending on length of treatment). 

With these two treatments, there is the added complication of serious side effects. We were warned that Jessica would definitely feel worse before feeling better when receiving treatment for Lyme Disease. Not dissimilar to chemotherapy, these severe reactions can last for days or weeks throughout the treatment.

An alternative option is a comparatively new treatment called Supportive Oligonucleotide Technique (SOT) (https://imcwc.com/html5-blank/supportive-oligonucleotide-technique/). This treatment involves only a phone consultation and then one office visit to receive an IV injection, after which Jessica could head home to live life while the SOT does its job. It travels from pathogen target to target over a period of months, removing the Lyme’s ability to replicate. Since it is a newer treatment option, there is less information available than antibiotics with respect to potential long-term effects; however, available studies indicate that it does cure Lyme over time, in as little as 6 months. It is not covered by our healthcare system, and is estimated to cost $5,000 total. Because it is a specialized treatment option not available where we live, Jessica will need to travel to Vancouver, BC to receive it, incurring even more financial burden for travel and accomodations. (More on SOT here http://thegenesiscenter.com/lyme/).

It is crucial to note a personal risk regarding the “grey area” of Lyme transmission. Because it is possible to transmit Lyme through intimate activity, I must also be tested to guarantee that I cannot reintroduce Lyme back to Jessica following her treatment. Furthermore, because it is possible to transmit Lyme in utero, both Elora and Cole will need to be tested as well. As mentioned earlier, these tests are nearly $1,000 each, and if any return with Lyme-positive results, further financial hardship is all but guaranteed due to our treatment needs.

My family and I have been trying to handle the situation on our own as best we can for months, but with the current COVID-19 pandemic combined with Jessica’s immuno-compromised state, she is at high risk of severe outcomes. Her health has quickly deteriorated in the last few months, and to complicate the situation further, she has also recently been diagnosed with asthma. As you can imagine, this is a particularly scary time for us. Her situation has become more dire, and we are clinging to the hope that she can begin SOT treatment as soon as is reasonably possible, hopefully in a matter of months at most. 

We are asking for the help of our family, friends, and community to raise enough money for the testing, treatment, and associated financial burden on our family. We really wish we didn't need to ask, and we would never do so unless we had no other choice. We are hoping that with the support of our community, our family will be able to look forward to brighter days. Thank you for taking the time to read (we know it’s heavy), and for your thoughts, prayers, and support.

With love,

Kris, Jessica, Cole, and Elora

Follow this link to let your Federal MP know that Canada needs a better plan when it comes to recognizing and treating Lyme Disease: https://www.change.org/p/minister-petitpas-taylor-ticking-lyme-bomb-in-canada-fix-canada-s-lyme-action-plan-now

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Organizer

Kris Koloff 
Organizer
Calgary, AB
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