This is an all too common story. It’s the story of how I caught Lyme disease. The thing is, once I caught it, I discovered that I had stepped into a zone of raging controversy.
It even has a name, “Lyme wars.” And while writing this post I learned to choose my words carefully to avoid taking sides!
It was a Tuesday. And it was field-day at our school. I didn’t get picked as one of the parent volunteers to help out, so I was glad I got to substitute teach. That meant I still got to join the fun.
I noticed what looked like an itchy mosquito bite on my arm. Pointing it out to the kids, I said, “Look I got bit!”
When I got home, I was exhausted. But I chalked that up to being outside all day with the kiddos, trying to reign in their competitive nature and keep them having fun. Then, I got a headache and it felt like a tidal wave of exhaustion came over me.
For the next couple of days, I just kept wondering what was wrong. I didn’t feel good. The only thing I could compare it to was the flu. Except this was way, way worse. Plus I had weird symptoms like random shooting pains in my ankles or knees. My neck felt very stiff and I had a constant dull headache.
Resting didn’t help, so I just started dragging myself around to wherever I needed to go, somehow making it at 1/4 speed.
The symptoms of Lyme disease include:
- Joint pain and swelling
- Flu-like symptoms such as headaches, dizziness, fever
- Night sweats and sleep disturbances
- Difficulty concentrating or memory loss
- Sensitivity to light
- Mood changes
- Unexplained pain or numbness
I had 5 out of 9!
The Bullseye Appears
Then, on Friday morning, as I toweled off after a shower, I saw it! The bullseye rash! It was in the exact spot I had pointed out to the kids Tuesday.
I felt a sinking feeling in the pit of my stomach. But, at the same time, I felt a little relieved to have an explanation for my strange symptoms.
Even in those few days I had kind of accepted the fatigue as my new normal.
“I had started to wonder if I was just going crazy. There was nothing visibly wrong with my body, so why was it failing me so miserably?”
Why couldn’t I do the simplest things without feeling exhausted?
I am SO glad I got the bullseye rash. That meant I started taking antibiotics just a few days after the Lyme bacteria got into my body. It hadn’t had time to burrow deep into my organs and tissues where the antibiotics couldn’t reach.
I thought back to when a Lyme infected tick could have found me. We had been on a gorgeous hike along a well-groomed trail the previous Sunday. This fits perfectly with the time frame usually given that a tick needs to be attached for 36 hours to transmit the bacteria. Most likely, the tick bit me then but detached by the time I noticed an itchy spot on Tuesday.
Ticks secrete an antihistamine which keeps their victims from feeling the bite. This explains why I never noticed the bite until the tick was already gone.
I’m also glad neither of my kids had a tick on them. How would they have been able to explain to me what they were feeling if I couldn’t even explain it to myself?
You’ve Had Lyme Disease Too?!
Once I learned it was Lyme disease, it seemed like everyone I talked to about it either had it themselves or had a close relative who did. How did I miss how widespread this is?
Lyme disease has now been reported in every state except Hawaii. The New England states have the highest rate of infection. It’s pretty incredible to look at the CDC statistics.
The good news: if caught early Lyme disease is very treatable. However, it can cause very serious problems. In rare cases even death. Also, an estimated 20% of people infected with Borrelia burgdorferi, the Lyme bacteria, don’t completely recover after initial treatment.
Treatment for Lyme Disease
As soon as I saw my bullseye rash, known as erythema migrans, I called my doctor. After seeing me at my local urgent care center, they prescribed doxycycline. Typically Lyme disease is treated with a round of this or similar antibiotics for 2 to 4 weeks.
I am happy to report that my symptoms disappeared within five days, and have not returned!
My Research Into Lyme Disease
Not everyone’s story ends this way. While I had it, I did a lot of searching for information.
Most of what I found has to do with chronic Lyme, which is especially difficult to diagnose and treat. It’s not even recognized by all parts of the medical community. Some other terms used are long-term or late-stage Lyme. The CDC calls it Post-Treatment Lyme Disease Syndrome.
Why the Storm of Controversy Around Lyme Disease?
My diagnosis was based on symptoms and the appearance of the bullseye rash as well as the fact that I noticed a bite. I was never given the blood test because it most likely would have shown up negative.
The test looks for antibodies to Borrelia burgdorferi. People don’t generally test positive until weeks after the infection begins.
Many have gone months or even years without being diagnosed. If a person never notices a tick or doesn’t develop the bullseye rash, the doctor may not test them for Lyme disease right away.
The symptoms are just common enough, just vague enough, to be attributed to any number of other diseases. Worse still, they may be dismissed as just being in the patient’s head.
Burgdorferi bacteria become harder to treat the longer they are found in the body. It finds its way deeper into organs and tissues where antibiotics don’t reach. Immune reactions and inflammation become more ingrained.
Co-infections are another problem. Ticks don’t just carry one type of bacteria. There are at least 10 other known types of bacteria transmitted by ticks. Some of the other infections have similar symptoms to Lyme.
Understandably, patients looking for ways to recover their health start losing faith in the ability of conventional medicine to help. Plenty of unorthodox methods have been advertised and tried by patients who are desperate for results.
On the other hand, physicians who see patients spending big money on unresearched alternative therapies have strong feelings as well. They worry not only about ineffective treatments, but also those that cause more harm to already suffering people.
What Can You Do
First, prevention is definitely the best medicine in the case of Lyme. Use insect repellent when enjoying nature. Walk in the center of trails and avoid high vegetation. After coming inside, make it a habit to check your body over carefully for ticks. Pay special attention to hairlines, underarms, backs of knees. Ticks like moist dark areas.
Many people, myself included, want to avoid chemicals on their skin if possible. Here’s a list of natural tick repellents that are scientifically proven to work.
If you suspect you have been bitten by a tick, or if you have unexplained flu-like symptoms soon after having been in a tick habitat, get checked by your doctor right away. The sooner you know and can get treated, the better.
If you feel you may have Lyme disease, and you’ve had symptoms for a longer time, don’t despair. Search for a Lyme literate physician in your area. You can use the directory put out by Lymedisease.org. The International Lyme and Associated Diseases Society also has a provider search feature.
More doctors than ever are becoming aware and willing to avoid the controversy and treat the patient.
What is Being Done to Fight Lyme Disease?
So far much of the public funding for Lyme disease in Massachusetts has been spent on education. The idea is that increased awareness will help prevent new cases of the disease. Unfortunately, that has not stopped the rapid rise in Lyme cases in the state.
In the medical community, there is a variety of research being done to help combat Lyme disease as well as help current patients.
One study is looking at ways to disrupt the spread of Lyme disease by studying two new neighborhood-based tick control methods. The Lyme and Tick-Borne Diseases Research Center at the Columbia University Irving Medical Center was formed to research the chronic aspect of Lyme disease. Projects underway at the Bay Area Lyme Foundation are searching for better ways to diagnose and treat Lyme disease, as well as creating a nationwide biobank of data that can be analyzed.
A Few Things That May Have Helped Me Recover from Lyme Disease
Back to my story a little. I took antibiotics for 3 weeks but I wondered what else I could do to help my immune system in its fight.
A common theme in articles on Lyme is the importance of diet and a healthy microbiome. It seems many patients with long-term Lyme feel an improvement when they eat a diet of fresh, whole foods.
Some recommended diets cut out dairy and gluten as well. The goal is to create a healthier growth of bacteria in the gut. This, in turn, strengthens the immune system and aids recovery.
By coincidence, I had already been doing just that for several months. Our family decided to eat more plant-based whole foods. My lunch every day was a large green salad. I cut out bread in favor of cooked whole grains. I have a dairy allergy so no problem there.
A friend had given me some water kefir grains, so I started drinking a Cranberry Lemonade detox recipe sweetened with water kefir for probiotics.
I probably will never know for sure, but chances are my immune system was more resilient and better able to recover because of the diet choices I already had made before contracting Lyme disease.
I hope this article can help you find answers and get help if you or a loved one has Lyme disease! If you have a similar story or any information that could help, please leave a comment!