Every year in America, 300,000 people are diagnosed with Lyme disease. Despite this alarmingly high number, there isn’t very much education or awareness about this debilitating disease. The problem is, most people, including medical professionals, don’t understand Lyme disease: How it presents itself, what the symptoms are, and how it affects a person’s ability to live and thrive. Thousands of people go improperly or undiagnosed for months or even years, causing unnecessary suffering and permanent damage to their bodies and their health.
This is what happened to Jenny*, and it has changed her life forever. Through her struggle, she wants to help educate others and push forward research and legislation for Lyme disease to be tested for and treated earlier.
What is Lyme Disease?
Lyme disease is an inflammatory infection that spreads to humans usually through tick bites. The bugs themselves are infected with borrelia bacteria which, when bitten, passes into your bloodstream and travels throughout your body. There are three stages of Lyme disease, through which your body goes through very quickly. This is why this disease is so debilitating: A diagnosis takes so long to attain, those affected are often in the latter stages of the disease already.
3 Stages of Lyme Disease
- Early Infection: This is within the first few days after being bitten
- Infection Spread: This can occur within days or take up to a few weeks
- Chronic Lyme Disease: The disease can move to this final stage within days to weeks of being bitten, and if left untreated (or improperly treated) can last for months or even years.
Symptoms of Lyme Disease
There are over 100 symptoms of Lyme disease, which is part of the difficulty in diagnosing it. We are often taught to look for the red “bull’s eye” rash, however only 30% of patients report developing a rash at all, and out of that only 9% said it was the classic “bull’s eye” version.
Other symptoms of Lyme disease include:
- Initial flu-like symptoms (fever, headache, nausea)
- Jaw pain
- Muscle ache and neck stiffness, joint pain and inflammation
- light sensitivity, double/blurred vision
- red eyes
- unexplained hair loss
- facial paralysis
- sore, hoarse, phlegmy throat
- decreased hearing, pain or buzzing sound in ears
- diarrhea, constipation, and GERD
- night sweats
- difficulty or pain breathing
- heart palpitations or blockages
- chronic fatigue/weakness
- burning or stabbing sensations in the body
- dizziness, difficulty walking
- mood swings, panic attacks, disorientation
- insomnia or too much sleep
- memory loss, confusion, can’t focus
- constant illness or infections
For a complete, comprehensive list please visit CanLyme.ca
Treatment of Lyme Disease
Treatment for Lyme disease is most effective when caught in the early stages. It can be reversed with antibiotics, though usually more than one round is needed. Antibiotics can be delivered orally, intravenously, intramuscularly, as well as through what’s called “Pulse and Combination Therapy”, which is relatively new and involves combining different antibiotic treatments.
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Chronic Lyme, however, is a different story, and the jury is still out as to whether or not it is completely curable. Some patients may benefit from longer, repeated courses of antibiotics, however, this does not seem to completely eradicate the problem for most and can lead to antibiotic-resistant arthritis.
At this point, the optimal treatment for patients with chronic Lyme disease is still unknown. While more studies are being done, sufferers need to work with doctors, medical practitioners, and physiotherapists to treat their specific symptoms and discover what works best for them.
For this Canadian woman, diagnosis, treatment, and healing from chronic Lyme disease has been a winding, nearly 10-year process. This is her story.
Chronic Lyme Disease: Jenny’s* Story
*Unfortunately, in Canada, chronic Lyme disease is not recognized as a real medical condition. In most cases, patients are sent for psychological counseling or told they have to seek treatment in the United States. Doctors who attempt to actually help patients with Chronic Lyme disease risk losing their license, so “Jenny” cannot use her real name and must remain anonymous.
In October of her final year of her three-year glass blowing degree, Jenny woke up with excruciating stomach pain, causing her to vomit profusely. At first, she assumed food poisoning, but when this happened every morning for a week, she knew something was seriously wrong. One week of morning upset turned into eight months of being able to stomach no more than a few crackers and some jelly beans throughout the day. All she was told by her doctor “If it hurts your stomach, don’t eat it.”
Despite the strenuous nature of glass blowing, she pushed herself to finish her degree. During that time, the pain spread from her stomach to her muscles and joints. She was put on Percocet to manage the pain enough to graduate.
For the next five years, Percocet was the only thing that made it possible to get out of bed each morning. Jenny made several trips to the emergency room with various excruciating symptoms.
No matter which doctor or specialist she saw, she was told the same thing: “You don’t look sick! You’re just a young girl with an eating disorder and are trying to blame it on something other than a mental illness”. Before trips to the ER or doctor, Jenny began applying make-up in such a way that she would appear sick and hopefully be taken seriously.
She had a colonoscopy that found issues in her colon that the specialist had never seen before. The medications she was given for it only made her condition worse.
For years, healthy foods like raw veggies, chicken, and lean beef caused her stomach pain and vomiting within minutes of swallowing.
“The only meat I could digest was pork… If I was having an overly bad day pizza and red wine were the cure.”
Over the years, Jenny was diagnosed with early on-set arthritis, fibromyalgia, sporadic heart arrhythmia, memory problems, a learning disability, endometriosis, and IBS. Her once perfect vision degraded and she began losing her hair, all the while being told that “that’s just the cards some people are dealt”. She was only in her twenties.
She could not work as a glass blower, so tried to go back to school. This was nearly impossible most days: She had no energy, could barely remember conversations from moments before, even her clothing caused her pain. She couldn’t work out, which she once loved, and she had to wear loose underwear and clothing that caused her less pain.
“Having to change my style and fashion to more comfort killed the last remaining aspects of what made me, me.”
The Lyme Diagnosis
It was Jenny’s mom, a pharmacist, who read an article on Lyme a thought that perhaps that’s what Jenny had. Several years back, while on a trip to the Dominican, Jenny had been bitten by sand fleas. Though there isn’t a way to be 100% sure, based on her symptoms this is where her doctors think she got it from. She never had any signs of a bull’s eye rash.
Jenny was tested in Canada six times for Lyme, all which came back negative. Finally, she went across the border to the USA, where she tested positive on the first try.
Her Lyme Disease Treatment
Jenny’s treatments began with a long dose of anti-malaria medications. These drugs made her incredibly sick, and she lost several pounds in just a few short months. She was too weak, sore, and confused to walk, so she spent many of those first few months of treatment in a wheelchair.
Whenever she could eat, she began eating the “anti-lyme diet”: No sugar, yeast, or gluten, but also no tomatoes, onions, or mushrooms.
As the Lyme bacteria began to die in her brain, their toxins were leaking, causing terrifying hallucinations, and making even the simplest of tasks, like grocery shopping nearly impossible.
Jenny was on several antibiotics, including malarone, rifampin, and clarithromycin. One year in, she began using them in combination with bee venom. For two years, every two days she or her parents had to sting her with ten bees on specific spots on her body. She bought the bees from the nearby university.
Over this time, she began to improve and was able to work, however difficult at times. She lost several friends because of the disease, many of them simply didn’t believe her because she didn’t “look sick”.
After moving from Ontario to Edmonton, where she no longer has the ability to store the bees over the winter, she switched to using one ounce of colloidal silver every day. She will be continuing with the bee venom when the weather is warm again.
Now, Jenny says she is 85% back to her normal self, and will soon be able to finally start her career. She will continue to treat her Lyme with bee venom and the anti-Lyme diet for many years to come.
Lyme Disease Support and Awareness
Jenny has learned a lot through her struggle with Lyme disease. She now wants to help build awareness and support research for this debilitating disease that nearly robbed her of her life. She started an Instagram account called LYMEnsTEEin (a play on words, combing Lyme and Frankentsein) from where she sells t-shirts to help fundraise for her expensive treatments from the states, as well as to spread awareness about Lyme disease and what it does to your body. She also ran organized a comedy show that raised funds for The Canadian Lyme Disease Foundation, CanLyme.
Lyme Disease is an extremely damaging disease that can change your life forever. Help support Jenny by visiting her Instagram account, and help educate others on the impact of Lyme disease by sharing this article. Together, we can fight Lyme disease!
*Article originally appeared at The Hearty Soul.