My Journey with Lyme Disease.
I was diagnosed with Lyme Disease last November, and what a wild ride it has been. This disease is transmitted via a tick bite, and the number of cases of Lyme Disease increases yearly. It is often missed or misdiagnosed, and since we are all at risk of receiving a tick bite and getting the disease, it’s essential to be informed and diligent with prevention.
What is Lyme Disease?
The history and name of Lyme Disease date back to the early 1970s when a group of children and adults in Lyme, Connecticut, and the surrounding areas suffered from puzzling and debilitating health issues, and by the mid-70s, researchers began describing the signs and symptoms of this new disease and named it Lyme. In 1981, a scientist named Willy Burgdorfer found the connection between the deer tick and the disease. He discovered that a bacterium called a spirochete (Borrelia burgdorferi), carried by ticks, was causing the disease.
If a human or animal is bitten by a tick carrying this bacteria, there is a risk of developing Lyme Disease. A single tick bite can also cause a person to get sick with several diseases called co-infections because the bacterium that causes Lyme Disease often carries and transmits other pathogens.
Geographically, Lyme Disease is found in the USA in the midwest, the northeastern and mid-Atlantic states, many parts of Europe, and in Canada, it is present in British Columbia, Manitoba, Ontario, Quebec, New Brunswick, and Nova Scotia.
Lyme Symptoms
The lack of the classic bullseye rash does not mean a person is not infected with Lyme. This rash, called erythema migrans, is a symptom and typically begins at the tick bite site. It slowly grows to more than 5 cm in diameter over several days and can sometimes be circular, look like a bull’s eye, and will go unnoticed if it’s in a difficult part of the body to see.
It’s important to understand that many people with Lyme Disease do not develop a rash.
Other early signs and symptoms include:
fever
chills
fatigue
headache
swollen lymph nodes
muscle and joint aches
Later signs:
more rashes
dizziness
severe headaches
migratory pain that spreads in the joints, bones, tendons, and muscles
arthritis in the knees, ankles, elbows, and wrists
thinking and reasoning symptoms, such as memory loss and brain fog
Other later-stage symptoms include:
nerve pain, weakness, tingling, or loss of sensation in limbs
drooping of one or both sides of the face (facial paralysis or Bell's palsy)
heart palpitations and an abnormal heartbeat
swelling of the brain and spinal cord
eye problems, such as pink-eye
In very rare cases, death could occur due to complications involving an infection of the heart.
What you should know about ticks.
Not every tick carries the bacteria that causes Lyme Disease, and not everyone feels or sees when a tick is biting. Some people are bitten on the back of their neck or leg and may never see the tick or notice a rash if it develops. This is why checking for ticks or evidence of a bite is essential if you’ve been outdoors regularly. Ticks are resilient and can survive in temperatures as low as 4°C. It is not unusual for a person to end up with Lyme Disease and have no awareness of when they were bitten. This can cause a frustrating experience because some people end up very sick before they receive a proper diagnosis, making treatment and recovery very challenging.
How to remove a tick?
Removing attached ticks as soon as possible reduces the chance of infection that causes Lyme Disease. Removing it properly will also decrease the likelihood of more bacteria being released into your body.
If you find an attached tick, follow these instructions to remove it:
Use clean, fine-point tweezers to grasp the head as close to the skin as possible and slowly pull straight out.
Try not to twist or squeeze the tick. Ticks firmly attach their mouthparts to the skin requiring slow but firm traction to remove them.
If the mouthparts break off and remain in the skin, remove them with the tweezers. If you cannot remove them easily, leave them alone and let the skin heal.
Wash the bite area with soap and water or an alcohol-based sanitizer.
Do not try to remove the tick by:
burning it
smothering it with nail polish, essential oils, petroleum jelly, or nail polish remover.
Testing of Ticks
There was a time when you could send your tick to be tested for Lyme. This is no longer available, as I believe there are too many ticks and insufficient resources.
Testing for Lyme Disease
Ontario produces over 70% false negatives, so you’re not likely to receive an accurate result. You may need to consider testing elsewhere in labs called Armin or Igenex.
Treatment
The standard treatment is antibiotics, usually Doxycycline. If the tick was attached for less than 24 hours and not fully engorged, an emergency room doctor or pharmacist will only give two dosages of Doxycycline, which I don’t believe does anything. If the tick was attached for more than 24 hours and engorged, you will likely receive two weeks of antibiotics. I’ve read that this will usually suffice, and no further treatment is needed. However, If the bacteria have had time to be in your body without any treatment, you must take antibiotics for much longer.
Herxheimer Reactions. When a person starts a Lyme Disease treatment or changes herbal and prescription antibiotics, it is common to experience worsening symptoms because toxins can be released when the bacteria die off.
My Story
I’ve been bitten three times by a tick. I felt all three bites and removed the tick. For the first two, I attended the local emergency department, received two dosages of antibiotics, and was told not to worry because the tick was not fully engorged or attached for more than 24 hours.
The third time I was bitten, I felt the bite and removed the tick. Since it wasn’t fully engorged, I didn’t seek medical attention because I followed the advice mentioned above. This was a big MISTAKE.
About a month after the bite, I started experiencing strange symptoms like severe foot pain, including stabbing, throbbing, and burning sensations that were so bad some nights that they woke me up. I had no idea what was happening and made an appointment with my physiotherapist because I wondered if I had plantar fasciitis. Then I woke up one morning with an intense burning feeling on my front right hip and, upon examination, discovered a giant bull's eye rash that had blistered.
I immediately went to the emergency department, and they informed me that I unequivocally had Lyme Disease because of the bull's eye rash. I tried to explain that the tick that bite me was not fully engorged nor on me for more than 24 hours, and the physician brushed it off. I was prescribed antibiotics for two weeks and continued to deal with symptoms for many months. I never submitted bloodwork to confirm the diagnosis, as the emergency doctor was confident with his diagnosis.
Over the next few months, I experienced many other symptoms; severe fatigue, brain fog, painful headaches, neck pain, joint pain, a swollen and painful left knee for many months, facial twitches, and one day after Christmas, I ended up in an emergency with heart attack symptoms. They kept me for the day for tests, and luckily everything was fine, yet they were not 100% sure what the cause was, but they felt that it could be related to Lyme Disease, something called Lyme Carditis, when the bacteria gets to the heart. Good grief.
I researched and found a Facebook group for people with Lyme Disease in Ontario, and this group has been supportive and provided important information about prevention, diagnosis, treatment, and resources. After reading some of the stories on this site, I feel fortunate that I caught it early and could access alternative medicine. Some individuals didn’t get diagnosed with Lyme Disease for years and will probably suffer with symptoms for the rest of their lives.
I took two weeks’ worth of antibiotics and still had symptoms. I like my family doctor; he is a good and caring doctor; however, I occasionally have to push back and advocate for myself. He admitted he knew little about Lyme Disease and was uncomfortable prescribing more antibiotics. I explained that I had researched and discovered that it’s recommended to remain on antibiotics if you continue to have symptoms. At one point, I got a little annoyed and said, “I’m not begging you for narcotics.” “I’m asking you to prescribe something to prevent me from getting sick.” He finally agreed, and I took Doxycycline for another six weeks. I started to feel better, but I still had all the symptoms, just less severe and less often. From chatting with people on the Facebook page and talking to others with Lyme, I knew I had to do more than antibiotic treatment.
I know a few people who fully recovered from Lyme after receiving help from a Naturopath. I contacted a Naturopathic Doctor in Ottawa at Bioheal, a clinic specializing in Lyme Disease. They prescribed many different supplements, and I followed a strict diet that excluded sugar, gluten, and alcohol for many months. They supported the prolonged use of antibiotics and devised a treatment plan to heal my gut once I discontinued them. Accessing this support and treatment was very expensive and critical to my recovery. I’m grateful that I could pay for it.
I did experience Herxheimer reactions a few times, and when they subsided, slowly, I started feeling better; and eventually, the only remaining symptom was fatigue. I recently had COVID, so it’s hard to distinguish whether the fatigue is connected to Lyme, COVID, or both.
What I’ve learned and recommend:
I must start with a disclaimer. I am not a health professional; these opinions are my own and from my experience with Lyme Disease and the research I have done. I highly recommend that you seek immediate medical attention if you have any indication that you may have Lyme Disease.
Prevention:
If you spend time outdoors hiking in the woods, walking through fields, or even just attending to your garden, you must diligently avoid tick bites. Always wear long sleeves and pants, preferably in a lighter colour, for easy tick detection. Consistently use a repellant, preferably without DEET.
Check yourself and your clothes when you return home. I wear the same pair of hiking pants, and after a hike, I place them in the dryer for 15 minutes to kill the ticks. My husband and I also check each other regularly before bedtime.
Our dog Peggy is black, so it is tough to detect ticks on her. We use a special brush on her each night before bed.
If you are bitten or have symptoms:
Follow the removal of the tick instructions above.
The general medical advice is that you do not need antibiotic treatment unless the tick has been feeding for more than 24 hours and is fully engorged. This was different from my experience and many other stories I have read.
I recommend receiving two weeks of antibiotics no matter how long the tick has adhered to your body. I firmly believe you can get infected with Lyme shortly after being bitten, though the medical community has a different opinion.
If you are unaware if you were bitten but are experiencing some of the above symptoms, please speak to your health practitioner as soon as possible.
Understand that a negative blood test for Lyme does not mean you don’t have it.
If your Lyme diagnosis has been confirmed, or you have some of the above symptoms, consider taking antibiotics and seeking additional alternative treatment.
Get informed and do your research. You must strongly advocate for yourself, insisting on taking antibiotics for long periods if you continue to have symptoms. There is a lot of medical gaslighting regarding Lyme. You should find a Lyme Literate Doctor.
Medical research and awareness for Lyme Disease have not caught up with the number of incidents of Lyme.
Lyme Disease can be severe, and infection could spread to the joints, heart, and nervous system if left untreated.
Be diligent and be well.
Anita
Resources:
2. Mayo Clinic
4. International Lyme and Associated Diseases Society
6. Treat Lyme
DISCLAIMER; The information provided on County Yoga Loft’s website blog is for general health care informational purposes only. All information on the site is provided in good faith. However, it should not replace consultation or advice from a physician and/or other healthcare practitioners. The use or reliance of any information contained on this site is solely at your own risk.