Transmitted by tick bites, Lyme disease is a bacterial infection that affects hundreds of thousands of people in the United States each year. The actual number is difficult to determine because Lyme symptoms mimic many other diseases, sometimes leading to misdiagnosis. We wanted to better understand what it’s like to live with Lyme disease, so we reached out to Jenna Seaver, who has been living with Lyme for many years.
How did you first learn you had Lyme disease?
Luckily, my doctor was very aware of Lyme disease and suspected it from the start. I lived on a 65 acre horse farm in Maine and was very active outside riding, gardening, and hiking. I was bitten by ticks frequently but never gave it any thought due to the lack of information at the time (1990s) and my hectic pace of life, given that I ran a business with my husband and had six children (a mixed family). In fact I rarely went to the doctor – even when I felt ill. So when I “crashed” in the fall of 2006, he put me on Doxycycline (an antibiotic) immediately, even though my ELISA (a test used to detect Lyme) was negative.
When I continued to worsen and became completely bedridden, my doctor ran tests to rule out any other illnesses. I also visited several specialists in Boston who diagnosed me with fibromyalgia, chronic fatigue, depression, and anxiety. I actually suffered from over 100 symptoms classically related to Lyme disease.
During that same time I was introduced to a friend of a friend, a “Lyme angel,” who was recovering from Lyme disease after a similar “crash.” This angel, and hopefully we all find one or two, recommended a LLMD (a physician familiar with the disease, referred to as a “Lyme Literate Medical Doctor”) in Massachusetts who ordered a western blot and diagnosed me with Lyme, bartonellosis, and babesiosis (infections caused by the bartonella bacterium and babesia parasite).
What do you think is the biggest misconception about Lyme disease?
Unfortunately, the Centers for Disease Control still maintains that Lyme disease is hard to catch and easy to treat. It is true that if you catch Lyme disease quickly and treat it aggressively that it can be eradicated easily; however, most people don’t even know they have it until it is too late.
How has Lyme disease impacted your life?
The emotional effects of Lyme disease are perhaps the hardest. Going from a self-assured and successful person to an invalid is devastating to say the least. Unlike cancer, Lyme does not garner the social or economic support that is needed to make a recovery. Like many others, I lost everything as a result of this disease: my wealth, my marriage…so everything changes. Daily life is all about survival and figuring out a way to rebuild a life, without the tools to accomplish it. It is a very daunting challenge, but it is possible.
Have you found any treatments to be especially helpful?
Antibiotics are the most successful and what is working for me. However, they are also controversial and not all people can tolerate the length or strength of pharmaceutical treatment. There are many “natural” treatments and some are extremely effective, but they are not always reliable. There are many excellent dietary supplements and I have followed Dr. Joseph Burrascano’s recommendations for years. I also find that daily organic juicing is excellent. Serrapeptase or some kind of biofilm busting agent is also an absolute requirement, regardless of the protocol.
What do you think people NEED to know about Lyme disease?
There is a treatment that is in clinical trials right now. It is two-pronged in that it kills the Borrelia bacteria and destroys the biofilm. Unfortunately, the process for clinical trials and drug approvals is very complex and costly. It may take years to come to market but at least we have hope since firms like ID Care’s clinical epidemiology and research have been relentless in their pursuit of the best available treatment options.
Why did you decide to start blogging about Lyme disease?
Before I started blogging, I built a website to consolidate my research on the internet. When I first got sick, the internet was like the Wild West and it was much harder to navigate. Now people share openly about their struggles and so my blogging started organically from the website. There is a huge loneliness factor with Lyme disease. It is isolating and creates a personal hell that can be debilitating all on its own. I have been blessed with so much love and support which I try to pass on in the best way I can and I hope to continue encouraging people with Lyme even after I am completely well.
Thank you, Jenna, for sharing your perspective with Health Stories Project!
As a reminder, information shared in Health Stories Project by our members and blog participants reflects their own experiences and opinions and should not be used as medical advice. Please consult with your healthcare providers when you are making any medical decisions.