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How has Lyme Disease affected your life?

Let me count the ways..
Our CDC refuses to recognize Chronic Lyme, as a real, life threatening disease. They say everyone can be cured with antibiotics in 30 days. That would be comical if it weren’t for the fact that it has rendered me disabled, and has taken me from living..to merely existing. Chronic Lyme is not only very real, it is devastating. Insurance will only cover short term treatment, and most cannot afford to pay for the incredibly expensive, out of pocket treatments that are necessary to survive and thrive. Chronic Lyme and it’s common coinfections (Bartonella, Babesia, Ehrlichiosis, RMSF, Mycoplasma) are truly a silent epidemic, nationally and globally. I have spoken to patients across the U.S., Norway, even Australia…and we all share two things in common. We all struggle to find and pay for costly, necessary treatment with doctors who practice privately, out of the eye of insurance and the CDC for fear of losing their medical licenses to save our lives…and we ALL have a fierce determination to LIVE, to truly live, not just exist. This disease can damage every organ, even the brain and heart, and invades our nervous systems, causing a neurological nightmare.

I am a 37 year old mother of two daughters (11&14), and a wife. I have displayed very minor symptoms throughout my life, but the perfect storm of unfortunate events caused my immune system to finally give up in 2012. I rapidly lost over 40 lbs., leaving me looking skeletal at 92 lbs.. I was losing the ability to swallow, had extreme anxiety/panic, insomnia and unbelievable fatigue, muscle and joint pain, daily tremors, extreme sensitivity to light and sound, and much more, but most prominent..feeling ‘fluish’ every day. I saw countless ER doctors, specialists, even a psychiatrist because I thought I was losing my mind (and doctors added to that belief, sadly). It wasn’t until I wracked up several chronic illness diagnoses, and found out that I had a hereditary condition (EDS), that I thought I was on the right track. I had spinal cord surgery, then a brain procedure..hoping these extreme measures were the answer, only to eventually recover and still feel sick and lost. I asked every doctor if I could have Lyme and they were all adamant that I did not. Low and behold, I finally went to a neuropsychiatrist, who had suffered from Chronic Lyme herself for decades, and within ten minutes of hearing my journey she stopped me and said ‘I am certain that you have Chronic Lyme Disease’. It hit me hard, but was also music to my ears. There were several things that led me to think this all along, but I couldn’t find a doctor to agree. I was finally tested with IGeneX, the most reliable test available, and sure enough, this doctor said I had the most severe case she has seen in over 14 years of working with Lyme patients. I then went to an LLMD, who wasn’t sure if he wanted to take my case, because he thought I was near death’s door. Luckily he did, and even stuck with me after I landed in the hospital for ten days after my very first injection of antibiotics. He had never had a patient as sick as I was. This scared me…but I was determined.

I am now in my 5th month of treatment, after having a picc line placed, and receiving IV antibiotics, supplements for GI issues that help boost the immune system, vitamin C, a great probiotic, and my secret weapon…IV Ozone. This regimen has brought me more progress in 5 months than I had seen in 3 years. I am slowly but surely improving, and I want everyone to know that they can too. I researched endlessly, for over 6 months, convinced my doctor to take chances with me, and most importantly…held onto hope that I would one day be the mother and wife that I once was. I’m not 100% yet…but I am fighting my way there. To my fellow Lymies/Spoonies….keep fighting and hold onto HOPE. It truly can get better!

What inspires you?

There are several things that inspire me, but if I had to choose just 3, I would say the love of my children and husband, and their unwavering support have gotten me through some of the darkest of days. I also think that certain chronically ill women that I have met through social media, have become like family as we’ve shared this rocky road together, especially my beautiful inspiration Anita, from Norway. She has fought Lyme even when it took her ability to walk, put her into a coma, has her living in a nursing home in her early twenties, completely dependent on others, and has now taken her ability to eat. She continues to fight with the most beautiful smile I have ever seen in my life. She amazes me, constantly. Finally, helping others. When you lose your ability to do almost everything you once knew and loved, you have to find new purpose. Advocating and educating inspires me to continue this fight for my family, myself and the millions effected by this cruel disease.

“When ‘I’ is replaced with ‘We’, even ‘Illness’ becomes ‘Wellness’.” – Malcolm X

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Story 1

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© Illustration by Life in Lyme Light.

How has Lyme Disease affected your life?

Lyme Disease has affected my life because it affects the people around me. Although I, myself, do not have Lyme, I am still fearful of its impact. My childhood best friend has the disease, this is how I truly became aware of its weight and opened my eyes to its controversial and very real side. I may not fully grasp what it’s like to have Lyme, but I am receptive enough to see its impact. I soon realized other friends, mentors and deceased family members had it. It affects those that endure it physically for sure, but I can say confidentially it affects those around it as well because I can feel it. Lyme Disease has affected me because my empathy is not strong enough to heal those I love battling it. Lyme Disease has put a damper on my happiness and caused a lot of helpless pain, but has opened my eyes and heart to devote myself and my abilities for awareness and a cure.

What inspires you?

The impact I could create for others inspires me. People inspire me. The chance to change even one person’s life inspires me. Freedom of expression in all forms inspires me. Love inspires me. Laughter inspires me and baked goods generally spark some inspiration as well!

“Laughter. An essential ingredient for survival. And we laughed a lot.” -Patti Smith, Just Kids

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