Rockford Woman’s Lyme Disease Story Will Scare You Into Protecting Yourself This Summer
Lyme disease is on the rise. And its no joke. Because of this past winter's unusually warm temperatures, the tick population is larger than normal.
Now that outdoor weather is upon us, it is important to know what you can do to protect yourself and your family from this debilitating disease.
- Apply bug repellent with deet.
- Use lemon or eucalyptus essential oil (less toxic than deet).
- Wear hats and long sleeved shirts in wooded areas.
- Tick proof your yard.
- Stick to clear paths when hiking.
- Check yourself for ticks regularly after being outside.
The signs and symptoms of Lyme diseases are often subtle and can mimic a number of other illnesses. If caught early, it is very treatable. To find out all of the signs and symptoms, check out the CDC website.
We recently talked with my close friend Michelle who has been battling symptoms of Lyme disease for 39 years. After finally being diagnosed with the disease in 2012. You won't believe how many ways this disease has destroyed her life. Here's a transcript of our conversation with Michelle:
How long did you experience symptoms before you were tested for Lyme disease?
I have experienced 39 years of symptoms. I was first infected around 1978. I was dealing with a knee that gave out. Eventually, I had to give up gymnastics and eventually playing softball and be put in a brace. I had migraines as a pre-teen, had sudden difficulty concentrating in school and I was in tremendous physical pain all the time yet with no diagnosis. Around the time this started my family had built a home on a heavily wooded property and with my sports I played in the grass and fields from morning until night. There were ticks in the grass but at that time we never knew of the danger. Sometime around 2010 things went drastically downhill for me. I believe I was infected again. Trauma can also bring symptoms back with a fury. It then took until 2012 after vast amounts of testing, CAT and MRIs, over 10 Doctors to then be finally seen by a Neurologist who said I had classic Lyme Disease symptoms. My test was positive and then I realized the maze of how difficult getting help really would be.
What were the symptoms?
Symptoms can vary from person to person. I realized something was wrong once I started falling down and had little depth perception. I had severe lower back and stomach pain. Debilitating migraines, extreme sensitivity to light, smells, and noise, insomnia, heart palpitations, joint pain and air hunger. Neurological symptoms of not being able to put words together, I would get lost driving, I could not complete even simple tasks, and everything took me 10x longer to do than it used to. I dealt with having slurred speech and eventually, I developed Bell’s Palsy and Trigeminal Neuralgia. There was a daily malaise that would feel like the first day when you get the flu when even your hair hurts. Depression, isolation, and paranoia are also common in patients. Lyme Disease symptoms can wax and wane or can become cyclical.
How has life with Lyme disease had to change?
Financial devastation is common with Lyme patients. I’ve experienced this first hand as insurance covers little but some of the prescriptions. Most Lyme literate MDs cannot accept insurance due to restrictions on what they can do for you beyond what the Center for Disease Control allows. An MD can be sanctioned and lose their MD license for treating you longer than they allow. Most of my treatment was all out of pocket. I had to become extremely disciplined, give up alcohol, processed foods, switch to all organic, grass-fed and gluten free foods so that while I was needing to take upwards of 90 pills a day so they would be most effective. All my prescriptions, shots and supplements had to be timed. Some with and some without food so scheduling all was a task. I was on antibiotics for over 3.5 years. For a very long time, I took 3500 milligrams of antibiotics a day in addition to all the experimental, holistic and alternative treatments that I did. You learn you have to decide if should pay that bill or order necessary supplements or even do the lab work you also really need. My life became about survival mode, so work and personal relationships suffered It is very common for patients to experience paranoia, loss of self-worth and esteem. You get used to some friends and family not “getting” what you’re going through. You get to disappoint people when you are unable to do the things you plan because plans have to be broken when you just don’t feel well enough to join them. You learn to smile through the pain, as there is a lot of hidden suffering to make sure others do not feel uncomfortable. This whole experience has however taught me so much about gratitude, attitude, helping others and how strong you truly are when you need to be.
What do you miss doing that you no longer can because of the disease?
Taking a real vacation! I do miss enjoying a glass of wine or going to have cocktails with friends. I miss my girls bowling league and riding my bike. I also would love to be able to enjoy a walk in the woods without fear of reinfection. This has changed me greatly I’m not the same person I was before I got sick. Not all of that is a bad thing, I’ve learned a lot about myself and others.
Serious illness not only takes a toll on the patient but often the spouse of the patient. How did your disease affect your marriage?
Financially this disease can be devastating to a family. Without empathy and a strong faith base supporting the marriage, many will fail with the introduction of a chronic illness. There can be harbored resentment on both parts for these life changes in your partner. It’s not just couples but many whole families dealing with Lyme Disease where instead of one person in treatment it can be many. Personally, my marriage did not survive my illness, however, there are plenty of couples and families that are brought closer together fighting Lyme as a team.
Is telling a potential partner about Lyme disease as difficult as it would be to disclose any other illness or sexually transmitted disease?
Lyme Disease is a blood and fluid borne disease so it can indeed be transmitted sexually or congenitally from mother to child in utero. Not all carrying the bacteria are affected. If someone has a strong immune system they may not show symptoms. I still feel disclosure and protection are extremely important.
What is their response?
I think in general most people are shocked to learn that Lyme Disease can also be transmitted person to person through blood or bodily fluid contact. Disclosure, facts, and conversation would allow a potential partner the opportunity to make an informed decision about pursuing a relationship.
What would you like people to know about Lyme disease?
According to the CDC Lyme Disease is the fastest growing vector-borne infectious disease. The number of cases reported annually has increased nearly 25 fold in the US since National surveillance began in 1982. Lyme Disease is very easy to get and very hard to treat. It does not take 24 hours of attachment to get Lyme Disease it can transmit the moment of the bite. Most people will not get a bullseye rash as we’ve been taught to look for. Testing cannot prove Lyme disease for 4-6 weeks post infection. When you get bit by a tick you also are likely to have also contracted other co-infections such as Mycoplasma, Bartonella, Babesiosis, Rocky Mountain Spotted Fever or Ehrlichiosis. Our US blood supply has also been affected greatly by Lyme Disease with the transmission and spread of the Lyme Co-infection Babesiosis. Not only ticks transmit the Lyme bacteria, so do insects with a gut that can regurgitate it’s stomach contents into your blood stream. This transfer can occur from a bite from an infected tick, spider, horsefly, sand fleas, fleas, and mosquitoes.
The biggest vector of ticks is the white-footed mouse and birds carrying and dropping the ticks into yards. Stay protected, get educated and become aware of that fact that a tiny bug the size of a poppy seed can change your life forever. There are so many misdiagnosed people walking around with Lyme Disease. Not one ALS patient has ever tested negative for having Lyme Disease. Lyme can be fatal, we have lost so many wonderful people due to this disease. Currently, there is no “cure” and no 100% reliable testing for Lyme. This has to also be a clinical diagnosis. Many with Lyme Disease are actually misdiagnosed with MS, Crohn’s Disease, Fibromyalgia, Rheumatoid Arthritis and Early ALS. If Lyme Disease is suspected early diagnosis and treatment is crucial.
If you or someone you know needs help with testing, support or to find a Doctor, please reach out to Illinois Lyme. For even more information contact International Lyme and Associated Diseases Society.