The picture below was taken 1 year ago today. I took it in my car right after an appointment I had that finally gave me some answers to suspicions I had about my health and then I cried before driving home.
That day I learned that Lyme, co-infections, parasites and other pathogens had set up shop inside my body and had probably there for years... maybe even decades.
What is Lyme?
Lyme disease is a vector borne illness caused by the bacterium Borrelia burgdorferi mostly spread by infected ticks.
In the early stages some people experience EM (erythema migrans) known as the bullseye rash fatigue and flu like symptoms.
I grew up camping in the Nicolet National Forest and many other Northern WI campgrounds —breeding grounds for ticks and mosquitos. Ticks are not the only insects that carry Lyme either. I don’t ever remember having a tick crawling on me or getting bit by one but that doesn’t mean I didn’t. Ticks can be as small as the size of a pin head or a poppy seed. Many people with Lyme don’t ever remember being bit by a tick. I also never had the bullseye rash but I have had probably thousands of mosquito bites maybe more.
Lyme and its co- infections are very difficult to understand. When you're bitten by a tick, you can get five or ten different infections at the same time as well as parasites each with its own array of issues it causes. Sadly, I learned that nearly 70% of those who are tested for Lyme get a false negative. Testing for Lyme is severely inaccurate which can lead to years of misdiagnoses while the Lyme and other pathogens continue to ravage the body sometimes doing irreparable damage.
Antibiotics are the mainstream treatment option but unfortunately they don’t always work and they can destroy your gut too which only adds to the already long list of issues one has to deal with. The spiral shaped Lyme spirochetes go into hiding when under attack spiraling away from the antibiotics. They burrow deep into your joints, bones, muscles, ligaments, cells and nerves. They can go into your heart and even cross the blood brain barrier into your central nervous system. You may think you’ve gone into remission but the spirochetes are still there protected by their biofilms just waiting for an opportune time like a mold exposure to make you sick with a weakened immune system allowing it to wreak more havoc on your body.
Thankfully new information is emerging all the time but there needs to be more awareness, more research, better testing and standards as well as alternative treatments.
What’s really scary is that the signs and symptoms of Lyme disease can mimic so many other diseases —as many as 350 conditions. Lyme can create multiple neurologic problems appearing very similar to Multiple Sclerosis (MS), fibromyalgia, arthritis, Parkinson’s, Crohn’s disease, Lupus, anxiety and depression, ADHD, Alzheimer’s and so many more. The symptoms of chronic Lyme (long-term persistent infection) can also vary.
Chronic Lyme Symptoms include but are not limited to:
Severe headaches and neck stiffness
Additional EM rashes on other areas of the body
Facial palsy (loss of muscle tone or droop on one or both sides of the face)
Arthritis with severe joint pain and swelling, particularly the knees and other large joints.
Intermittent pain in tendons, muscles, joints, and bones
Heart palpitations or an irregular heart beat (Lyme carditis)
Episodes of dizziness or shortness of breath
Inflammation of the brain and spinal cord
Nerve pain
Shooting pains, numbness, or tingling in the hands or feet
Visual disturbances
I have had all of these symptoms for years but never gave it any thought that I could have Lyme until some of my friends who have it mentioned their symptoms 😔 They urged me to look more into it and shared what they were doing to help heal their bodies.
I tried to remember what kind of symptoms I’ve had over the years to try and pin point when it may have all started. I really have no idea but these are all the things I have dealt with over the years...
I had terrible migraines/headaches (my first was at the age of 10 and it made my vomit), I’ve never been able to gain weight, I have joint pain and inflammation that started around my late 20’s, I’ve had TMJ since my teens, dental issues and pain the last 2-3 years, pain in my tail bone since high school, sensitivity to light, eye floaters, extreme sensitivity to artificial smells (hyperosmia) + toxins, eczema and skin issues off and on since childhood, itchy skin, bloating after eating, gut issues, food sensitivities, adrenal fatigue, chronic fatigue, heart palpitations, air hunger, kidney pain, muscle twitches, ears ringing, noise intolerances, brain fog, memory issues, pain in feet, cold extremities, PMS, hormone imbalances, hot flashes since my early 20’s, OCD and ADHD like symptoms.
I thought I was pretty healthy. I mean I never really got sick and I looked fine and my Doctor always told me I was healthy, there was nothing wrong... so there couldn’t be anything wrong with me. And thats the thing, I could and would be fine for a while and then I wasn’t. It was a cycle of ups and downs —a roller coaster.
Healing from Lyme and all that goes with it really is a roller coaster whether you go the traditional western medicine route or a more holistic natural approach like I am. After starting my protocol I felt pretty good. My energy came back, I was going to bed at a normal time and sleeping better than I had in years. I was able to do many of the things I enjoyed without feeling totally wiped out. But just as I started feeling better things started to change again.
When I would get exposed to chemical toxins, fragrance or mold or when the pathogens started to die off too fast for my body to eliminate the Herxing would start. When I Herx (a reaction to die off or detoxing) it starts out usually as a stabbing pain in my head which gets more intense until it feels like my brain is on fire! It can last sometimes up to 3 days keeping me bed ridden. It sucks!
If I’m really being honestly, this past year felt like going through hell and back sometimes. It’s the sickest I have ever felt in my entire life! I had no idea when I started my healing journey with Lyme that I might actually feel worse than before I started it. Since I tend react to things much more intensely than most I started listening to my body and slowed things down. I am thankful to have found a rhythm now with my protocol that seems to be working so far!
As far as the emotional stuff I have good days and bad ones. It’s just another roller coaster I’ve had to deal with. I have found different ways that help me cope which I hope to share in a future post. I will say that I’ve cried, I’ve prayed a lot and I’ve had to say NO to many things this past year which has given me much needed time to rest and continue to heal.
I feel like most people don’t really understand what it’s like living with these invisible invaders that hold you captive. You never know when they’ll attack and hold you hostage. I feel like some think it’s all in my head. Like I’m not really that sick. I’m just lazy. And I’m sure some think I should have gone the western medicine route for treatment too. I can’t worry about all that stuff though. It’s not my job right now to make people understand. I just need to focus on healing right now and being present for my family.
I am very thankful that God lined up some pretty amazing people in my life to help me navigate this journey. They understand me and my struggles, they get it because they’ve been there too.
So that’s my Lyme story 1 year in and this is me now...
healing slowly, learning and growing. XOXO Carrie
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