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My name is Serena and I have been quite sick with chronic neurological Lyme disease for over 5 years. My journey has been long, exhausting and very painful. While asking for financial help is difficult, I feel it is time to invite others into my journey to recovery. My amazing parents have invested so much in my medical expenses and overall health, so I hope this can bring some relief to our family. I currently have a team of doctors who treat patients like me who have been suffering for a long time unable to get better. These treatments are quite costly but are my only hope of recovering and returning to a life of some normalcy.
Every aspect of my life has been deeply affected by this horrible disease and it can feel very lonely and hopeless. The life I imagined as a young adult is not attainable feeling this sick. Doing basic things like running errands, socializing, going for a walk etc. can be extremely exhausting and taxing on my body. I have lost so much of what I once had, and the person I once was. I used to be full of life, excited about my future, a career, having a family and the many experiences that most young adults enjoy. Instead, I frequently worry about my future, and what it holds. However, I am often in too much pain to even consider the next few moments. It is a very sad and disheartening situation. It has been hard seeing the toll this has taken on my parents and sister as they have seen me suffer and not have the ability to take away the pain.
My Story:
I was a sickly child having various issues and symptoms dating back to age 9. Over the years I continued to gain more health problems which remained unresolved. I saw many doctors and ended up in the ER on multiple occasions still getting no answers. Doctors attributed my symptoms to stress and over time I felt deflated and unheard, but we were at a loss of where else to go for help.
In 2017, I started university, and my health was rapidly declining. I was constantly fatigued, severely nauseous, fainting and missing a lot of classes. Once again, I saw many doctors who advised me all my symptoms were a result of stress. At this point, they were partially correct, but I knew that wasn’t the whole picture. As that year passed, I became progressively worse causing bouts of depression and anxiety as I was overwhelmed with my illness and the usual stresses of school.
The month of May always brings feelings of intense sadness and trauma from everything I have experienced. In May 2018 our family took a vacation, and I was quite ill the whole time. Just before leaving I was unable to stand for short periods of time because I was so weak and faint. I spent the trip mostly in bed. Sadly, this was the last family vacation we’ve had.
May 31, 2018. This day forever changed my life as my disease took a turn for the worse. I couldn’t sleep that night. Something in my brain had drastically shifted and though I didn’t know at the time, my life would never be the same. I woke up with so much pain in my brain and my whole body. The pain became more intense as the days passed, and I had no idea of the cause. I had horrible insomnia and developed more debilitating symptoms. At this point I hadn’t slept in 3 days, and I was not coping well, crying throughout the day and night. We went to the hospital, and I was immediately sent to the psychiatric ward for what they thought was a mental breakdown. This is sad for me to share because the doctors convinced me my physical ailments were all in my head which couldn't be further from the truth. However, at the time, I listened to the doctors and went down the root of mental Illness.
I was weak, had no appetite, was extremely sensitive to light and sound, my whole body hurt; I was losing weight rapidly, I would shake uncontrollably from my hands to my head, and my brain felt like it was literally on fire among a plethora of other symptoms. I was numb, in constant pain and every hour was difficult to get through. The treatments for mental illness were not working and I was still on the decline. I soon became bedridden for the next 2 years. Sadly, I couldn’t return to school that Fall. I don’t remember much from this time. What I do remember is that I was in excruciating pain, being alive was horrible. I spent many days and nights in tears with my mom lying next to me. At times, I thought I would not wake up and often hoped I wouldn’t. All my symptoms listed were over 2 pages long at this point.
Despite the crawling in my skin sensation from car rides, I finally started to visit new doctors to address my physical health. Over the next couple of years, several doctors helped me regain enough strength to get out of bed. But the improvement was minimal. In 2020, I started receiving diagnoses for multiple illnesses.
In July 2020, I was diagnosed with multiple strands of Lyme disease. When I heard this diagnosis, I felt both relief and intense fear. Countless doctors and treatments later, I became stagnant, and this has continued for the last couple of years. Thankfully, I am no longer bedridden but despite what it may look like, I struggle every day. For me, it is my brain pain that is the most debilitating. It has been such a long journey with no end in sight. Lyme disease rarely kills you, but it does steal every part of your life.
From 2020 to now very little improvement has been made and I have continued to try. It has been extremely difficult to continue this process when my body and mind are so exhausted from the years of pain. I never get a break; I am always uncomfortable and in pain. While it doesn’t look like I struggle as much as I do, looks can be very deceiving. No one would choose to live the life I do without having something seriously wrong. Since getting sick, I barely see my friends or family. It is extremely difficult for me to enjoy being out and socializing. I have watched so many people close to me do the things I have always dreamt of which is truly heartbreaking. While I’m happy for people, I hate living in a body that will not allow me to choose what I want to do without experiencing the consequences afterwards.
I hope sharing my experience helps people understand what Lyme disease is really like. It steals so much from your life, and you are left trapped in a body that is constantly in severe pain. Several doctors have indicated that my symptoms appear to be Lyme encephalitis and/or meningitis. When these are coupled with Lyme they are often not as deadly and people can live with them for years, but with unimaginable pain. When my brain is at its worst, it is challenging to be awake and all I want to do is curl up in a ball and cry. I feel immense pressure and pain in my brain and spine like nothing I can describe. It honestly feels like a match was lit inside my brain. Living like this is not fathomable in the long term and I am desperate to live a life better than this.
Doctors have described me as a canary in a coal mine and that a ‘perfect storm’ has resulted in my many issues. They also believe that Lyme opened the floodgates to multiple chronic illnesses. I am currently diagnosed with Lyme and coinfections, POTS (postural orthostatic tachycardia syndrome), Sjogren’s (an autoimmune disease), endometriosis, PCOS (polycystic ovarian syndrome), and MCAS (mast cell activation syndrome). It has been devastating for me to process all these diagnoses after being told it was in my head for so long. In addition, my doctors are still trying to put all the puzzle pieces together.
How You can Help:
Lyme disease in Canada is difficult to test and treat. I have seen many different doctors (in Canada and the US) and tried various treatments, that I frequently have negative reactions to as the Lyme bacteria becomes aggravated very easily causing a serious increase in the intensity of my symptoms, making the process long and challenging. This is very common for Lyme patients as they experience herxhiemer reactions (a worsening of symptoms when the bacteria dies). With so much trial and error the costs add up quickly. My parents have spent a great deal on my health costs thus far and while I am eternally grateful, I hope to relieve some of this burden. I was 18 when this nightmare began and since I couldn’t work, I have no income and my medical insurance has ended. In addition, since my sweet mom is my caregiver, she had to decrease her workload. My parents have been so generous, but the financial burden is taking a toll. Any amount is sincerely appreciated and if you cannot contribute, please consider sharing my story and keeping me in your prayers.
The funds raised will be used for different forms of treatment and medications/supplements needed on my health journey. Here are a few of them: various IV’s to support my body ($100 + per session); hyperbaric oxygen chambers which could aid in the restoration of my damaged cells ($2,000 +); and ozone dialysis which essentially extracts blood for deep cleansing and detoxing before returning the blood to the body (minimum $10,000). These treatments can make a huge difference and I am hoping that I can do a round of this in the coming months. The costs listed are for a few treatments only, there are many additional costs like doctor’s visits, supplements and medications, special dietary requirements and more which rank up quickly. My doctor advised me that these treatments only scratch the surface of what I will likely require in the near future. I would be so grateful to have the ability to dive in and try different treatments without having to worry about some of the expenses.
Thank you all so much for your support!
Additional Resources:
Below I have included several resources if you are interested in learning more about Lyme disease.