By Tonya Mott
Disclaimer: Lyme Disease is extremely complicated, medically and politically. I will do my best to share what I’ve learned and my references. I am nowhere near an expert on the matter, I only wish to bring awareness in hopes of helping others. Please feel free to reach out to me directly if I have misspoken about any information I’m about to share.
Have you ever had someone close to you experience complicated health issues? You’re not the one, and watching what they go through is exhausting. Not only are they dealing with the symptoms of their illness but they are also trying to navigate our complicated health system (providers, caretakers, procedures, insurance, government, legal, etc.). I first experienced this with my Grandma. She suffered from a laundry list of health problems. Then my husband started to experience medical issues, most of which are still undiagnosed and that includes a trip to the Mayo Clinic where he still didn’t get any answers.
Between my Grandma and my Husband, I thought I’d seen it all until my best friend, was recently diagnosed with Lyme Disease. Let’s just say, mind blown. Watching the pain and suffering this has caused her has been heartbreaking.
Here’s how it all began…
We have been best friends since kindergarten (30 years). When I was a kid, Kelsey’s house was my second home. I spent many nights at her house (even on school nights). We’d make homemade pizza, followed by hot chocolate in our jammies, and if we were lucky we’d have a snow day which meant NO SCHOOL!
A few snapshots from our glory days:
Last September, Kelsey had returned from a long road trip and we made plans to meet at her parents and relive the pizza making days.
Instead, I got a text that just about made me fall out of bed. It was this:
The infamous bullseye rash, Kelsey has Lyme disease. My initial research was that if you spot the rash (not everyone is lucky enough to see the rash before it goes away) you most likely caught it early and after a 30-day treatment of antibiotics you’ll be back to normal. I thought, Phew, she’s in the clear she caught it early. I was so wrong…notice in the pic how she has two bullseye rashes. This meant Kelsey has systemic Lyme and most likely has had Lyme for years.
What I thought I knew about Lyme disease prior to Kelsey’s diagnosis:
- Alaska doesn’t have ticks so I don’t have to worry about it
- Avril Lavigne disappeared off the face of the earth and when she resurfaced years later she said she’d been battling Lyme disease
What I know now:
- Alaska has ticks (not saying Kelsey got Lyme from a tick in Alaska, I don’t know where she got Lyme, I’m just saying, Alaska has ticks): Research Tracking Tick Increase in Alaska
- Phases of Lyme in the simplest explanation I’ve found: https://drpompa.com
- The Centers for Disease Control (CDC) estimate that 300,000 people are diagnosed with Lyme disease in the US every year. That’s 1.5 times the number of women diagnosed with breast cancer, and six times the number of people diagnosed with HIV/AIDS each year in the US. However, because diagnosing Lyme can be difficult, many people who actually have Lyme may be misdiagnosed with other conditions. Many experts believe the true number of cases is much higher.
- Lyme is called “The Great Imitator,” its symptoms mimic many other diseases. It can affect any organ of the body, including the brain, nervous system, muscles, joints, and the heart. Patients with Lyme are frequently misdiagnosed. In one article, I read that its symptoms can imitate up to 350 different illnesses. Most specifically mentioned:
- Chronic Fatigue Syndrome
- Multiple Sclerosis
- Rheumatoid Arthritis
- Various psychiatric illnesses including depression
- Dr. Dietrich Klinghardt, a leading expert and innovator in Lyme disease treatment for over 30 years, says his practice has never tested anyone with Parkinson’s, ALS, Multiple Sclerosis, or Alzheimer’s that does NOT test positive for Lyme. To quote Dr. Klinghardt: “Lyme Disease is not a bacterial illness; it is an activation of retrovirus caused by the bacterial infection.” Basically, if your DNA has a predisposition to the above mentioned diseases, Lyme may trigger them to become active.
- The Controversy – aka “Lyme Wars”. I’ve found this part hard to summarize but I’ll take a stab at it:
- The CDC, the country’s chief public health agency and the Infectious Diseases Society of America (IDSA) doesn’t acknowledge the existence of Chronic Lyme. The CDC endorses the IDSA’s written guidelines for treating Lyme, which says Lyme disease is hard to get and easy to treat.
- The 14 members of the IDSA that wrote the guidelines around treating Lyme, have several conflicts of interest:
- 6 of 14 Hold patents associated with Lyme
- 4 of 14 Received funding from Lyme test manufacturers
- 4 of 14 Were paid by insurance companies to write guidelines or serve as consultants in legal cases
- 9 of 14 Received money from Lyme vaccine manufacturers.
- Insurance companies have resisted accepting the validity of Long-term Lyme disease. Doctors who disregard the insurance companies and CDC guidelines for treating Lyme, and who prescribe long-term treatment for patients with Lyme, risk being investigated by government agencies and medical boards. Treating a disease that some believe doesn’t exist can lead to losing a medical license or being charged for fraudulent billing.
- The Stigma – “The symptoms are all in your head”, Lyme comes with a host of symptoms and the Centers for Disease (CDC) recommended “Western Blot” test almost always provides a false negative.
False Lyme diagnosis in 1991 Simpsons episode – https://www.youtube.com/watch?v=VjkCj0HJnLs (20 seconds)
I could go on and on about the controversies and conflicts of interest but it would just hijack this entire article.
Below are two updates Kelsey shared on Facebook since her diagnosis. I thought it would be best to share her experience in her own words. What she is going through and how she is coping with the whole situation is remarkable.
To learn more about Lyme Disease, I highly recommend watching these two documentaries (free on Amazon Prime):
- Under our Skin (2009) – Exposes the hidden epidemic of Lyme disease and reveals how our corrupt health care system is failing to address one of the most serious illnesses of our time.
- Under Our Skin 2: Emergence (2015) – This highly-anticipated sequel, investigates the deepening Lyme disease crisis and follows its casualties and controversies. And when we revisit the once gravely ill characters from UNDER OUR SKIN, we see that they have moved from horror to hope, arriving at better health and reclaiming their lives.
After witnessing my Grandma, my husband, and now by best friend experience chronic illnesses, the lesson learned for me, is to be patient and be there for them when they need you. Listen to understand verses respond. DO NOT disregard, doubt, or make them feel bad for their symptoms. This is the time they need you the most. Unfortunately, for me it took my Grandma passing to understand this lesson. I want to cry every time I think about how I treated her. I wasn’t bad to her but I definitely could have been more sympathetic to what she was experiencing. If someone close to you is experiencing complicated medical issues, ask yourself, how are you being there for them? They need your support, trust me, coming from an expert.
Pre Lyme disease diagnosis. Full-time Beachbody Coach, the most active person I know, promoting wellness, and selflessly helping others with their health goals.
Post Lyme disease diagnosis. Full-time warrior, yet, still managing to selflessly help others fighting chronic health issues.