Other side of the bed rail

Published 10:30 am Monday, May 30, 2016

By JENNIFER STALLINGS
Special to the News-Herald

May is Lyme Disease Awareness Month, a disease and cause I’ve come to know all too well.

According to the CDC, Lyme Disease is the fastest growing vector-borne infectious disease in the US. It also states that Lyme infects approximately 300,000 people each year.

Until last January, my life was like many living in the Roanoke-Chowan area. As a busy wife and mother, days were filled with school and housework, and nights I worked as a nurse at the hospital. Who could’ve known that within a month I would find myself on the other side of the hospital bed rail.

With a myriad of symptoms, I visited doctor after doctor, hospital after hospital, all to no avail. Fevers, headaches, visual difficulties, chest pain and palpitations, and limb weakness and numbness are just a few symptoms I have had. At that time I was too ill and had to rely on family to fight for help and answers.

After multiple tests, I was given possible diagnosis from multiple sclerosis to cancer. Then I was politely told it was a “wait and see” kind of thing and they would treat my symptoms until then. Needless to say, I don’t like “wait and see” scenarios.

So I went home, took the medicine, and continued life with my family as best as I could. Unfortunately, I lost my job as a nurse when my FMLA ran out, entering a new element of stress.

I never stopped searching for answers. I would search a while, then stop and rest, which was quite often since I’ve been plagued with extreme fatigue. I don’t mean the “working 16 hour shift” fatigue, I mean the kind where “it’s all you can do to get up from the bed to go to the couch” fatigue. To be completely transparent, on some days showers were avoided because it was just too draining.

I knew that I tested positive for Rocky Mountain spotted fever early on in this process, but the infection was no longer active. Since this is a tick-borne illness, I began researching and noticed that all of my symptoms were the same as someone with Lyme Disease, also caused by a tick bite. I never got the classic “bull’s eye” rash, but according to ILADS, only about half get it. I also learned that not all Lyme tests are created equal, some bands are omitted on commercial tests.

I saw an LLMD (Lyme literate doctor), who told me that I needed more blood work to confirm the diagnosis of Lyme. This time, my blood was sent to a special lab in California. Five weeks and a follow-up appointment later, my Lyme diagnosis was confirmed. So now, real treatment begins.

Why share my story? As a nurse, I do this to educate my community, to keep other families from going through what we have. As a mom, I do this for my children and future generations. As an advocate, I do this for those not yet diagnosed, and for the ones a diagnosis came too late.

This is not to incite fear or panic over a tick bite, just be educated on it. Check yourself, your children, and pets for ticks after being outside. To remove a tick, use tweezers and pull at the base of the head, closest to the skin. If you develop fever, rash, or headache after bitten, see your doctor.

So yes, May is Lyme Disease Awareness month. If you see me, I’m not too hard to spot. I’ll be the one wearing a lime green ribbon on my shirt, while sporting lime green nail polish-all because I am a Lyme warrior. Hopefully someday soon, I’ll see you on the other side of the bed rail, right where I belong.

Lyme Quick Facts

(from ILADS.org)

Fastest growing vector-borne infectious disease in the US

300,000 people infected each year

5 species, over 100 strains, and 300 strains of Lyme world-wide

<half of people with Lyme recall a tick bite

40% of Lyme patients end up with long-term health problems

<half recall any rash

Lyme is a clinical diagnosis

As stated on the CDC website, the surveillance criteria were never intended to be used as diagnostic criteria, nor meant to define the entire scope of Lyme disease

Lyme Symptoms

(This is a brief list. It doesn’t encompass all symptoms)

Fever

Headache

Bull’s eye rash

Flu-like symptoms

Severe fatigue

Joint and muscle pain

Limb weakness

Bell’s palsy

Neuropathy

Chest pain/palpitations