Why My Family's Biting Lime and Why You Should Too | The Family CHO

This is what it looks like when you ask your whole family to take a bite out of lime. I’ve never been so happy to share such an unflattering photo of myself and unbelievably, my husband and daughters feel the same way. We’re in good company though – celebrities are doing it too (see below). The resulting photos are great for a laugh, but what they represent is no laughing matter – I know from experience.

So, what's the deal?

 

It’s the #LymeDiseaseChallenge, a campaign to raise awareness and funding for much-needed research around the disease.

Not sure why Lyme disease should be such a big deal in the first place? According to the CDC, it’s the fastest growing vector-borne disease in the U.S., infecting 300,000 people per year (and likely many more - it’s hard to know exactly how many, because there are no reliable tests for the disease). And its effects can be far more serious and debilitating than was previously thought. That's why it's so important to learn more and find out how to protect yourself

Who's behind it?

The Lyme Disease Challenge was devised by five women – an attorney in Florida, a teacher in New York, a nurse in Texas, a business owner in Virginia and a speech therapist in California – who are all battling Lyme Disease, many of them mothers of children with Lyme as well. 

In the midst of their own battles, they're fighting to advocate for others - we can all get on board with that, can't we fellow Family CHO's?

Here’ how the challenge works. 
Consider yourself tagged.

The challenge has attracted celebrity support, including from some who have the disease themselves like Yolanda Foster and Avril Lavigne, whose battle with Lyme was also recently featured as the cover story of People magazine. William Shatner, Lisa Rinna, Dr. Oz and others have also joined in.

I’m so happy to see how far the conversation around Lyme disease has come today compared to just 10 years ago when I was diagnosed.

Awareness, research and knowledge are growing, thanks to the efforts of many, like the women behind the Lyme Disease Challenge, who learned the hard way how to advocate for themselves and are taking their fight even further on behalf of us all. 

But it wasn't always this way and there's still far to go. For many, like me, the mysteries and misunderstandings surrounding Lyme disease have challenged their health and their lives in a way that could never be summed up in one photo…

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I contracted Lyme disease in 2004 while at a family vacation home on Prudence Island, RI (a hotbed of tick activity). My husband pulled a tick off the back of my right thigh that weekend. At the time I didn’t think much of it. I only remembered the incident because it happened on a very special day - my oldest child’s first birthday.

One week later I developed severe pain in my right knee, an ache in the back of my neck and other symptoms that felt like an oncoming flu – odd, I thought, as it was the middle of July. But I figured whatever the virus was, it would pass.

A month later I was struggling with severe headaches and exhaustion, joints that ached so badly they felt like they might burst from the inside, and a complete lack of appetite that had already caused me to lose ten pounds. I knew something was very wrong and, remembering the tick bite, immediately suspected Lyme.

But an ELISA test (the preliminary screening test for Lyme Disease) came back negative. At the time I didn’t know the ELISA had a high rate of false negatives or that, because it measures antibodies to the Lyme bacteria rather than detecting the bacteria itself, being on antibiotics at the time of infection could abort the body’s antibody response, causing a negative test result even if one is infected. I happened to have been on antibiotics when I was bitten.

By the holidays I was nearly incapacitated.

I was still suffering with the same symptoms, plus severe headaches I’d later learn were actually encephalitis; insomnia, which is particularly punishing when you’re already exhausted; muscle twitches that ranged from small tics to full limb spasms; tingling and numbness throughout my body; intermittent stuttering; and an inability to find words or sometimes even concentrate long enough to finish one thought before jumping to another.

I remember at one point staring at the electronic buttons on my stove, unable to figure out which ones to push and in what combination just to turn it on and set the temperature.

I’d seen half a dozen doctors by that time but my symptoms remained a mystery. A host of possible causes and diagnoses had been tossed about and left to swirl around my head like threatening dark clouds.

Some were terrifying, like ALS and MS. Some, like fibromyalgia and chronic fatigue syndrome, seemed to me like cop-outs in my situation, a catch-all diagnosis when none other could be found. And some flat out angered me - that my symptoms were just the result of being “a tired new mom” or that they were psychosomatic.

At first, even family and friends tended toward that last explanation. If the doctors could find nothing wrong, what else could it be? It had to be all in my head. And that, by far, was the worst part of my struggle. I was fighting a battle that had no name. 

I had nothing specific to point to when people asked what was wrong, and so the finger inevitably was pointed back at me.

I felt completely alone and the truth is that I was. As that truth dawned on me my worry turned into outright fear. Just when I was at my weakest, there was no one in my corner to help me fight. It wasn’t long before that fear made the psychosomatic label all too believable, like a self-fulfilling prophecy that began as a lie but quickly warped into the truth.

I was anxious. I was overly emotional. I was having trouble functioning normally. And why not? I was sick. I was scared out of my mind. And I was being told at every turn that it was my own mind that was at fault.

Fortunately, fear is a great motivator.

I knew my feelings were not the cause of my illness, but the result of my illness not being believed. I dug in my heels and held on to the conviction that I knew myself, my own body and my own mind, better than anyone. My symptoms had come on so suddenly and so strong that common sense dictated there had to be a solid cause rather than a vague label at their root.

Luckily for me I was skilled at research, having a background in journalism. Since my mother was a nurse, I grew up in a house full of medical books which I often read through with fascination, so I was familiar with medical terminology and basic concepts.

I put those skills to work and researched, and researched, and researched. I also chatted with others in online forums and finally discovered that I wasn’t alone in my experience. The more I learned, the stronger my conviction became that Lyme disease was behind my symptoms.

Still, I was hesitant to cling on to a red herring, especially with so many doubting me already. So I read even more deeply about the disease in medical journals and presentations from infectious disease conferences, discovering how polarized the medical community is on the existence of chronic lyme, the reliability of testing, and even what course of treatment is effective early in the disease.

Slowly, I stockpiled the information I needed in order to advocate for myself. I also discovered a short list of doctors within driving distance who were considered “LLMDs” – Lyme Literate Doctors – and made an appointment with one.

Finally on January 11th, after six months of suffering, I was given a clinical diagnosis of Lyme disease. It was my 27th birthday. To this day it’s the best birthday gift I’ve ever received.

I broke down and cried in the doctor’s office, not because I was upset at having been given the diagnosis, but because I was so happy. I already knew I was sick. Now I had a name for it. And I had a plan of action to try and get better.

It took a year and a half of on-again, off-again treatment cycles and the symptoms got worse before they got better, but eventually the worst of them disappeared.

Nearly 11 years later, however, the effects of Lyme disease and its mysteries still loom over me and shadow my future.

I still have bouts of exhaustion, muscle twitching and joint pain, as well as unexplained nerve pain in my spine. The symptoms like to cluster together and come out to kick me when I’m down – during times when I’m particularly busy or stressed, or when there’s some other medical issue going on. 

There are also random episodes of inflammation (in my corneas last year, and my pancreas most recently) that can’t be attributed to anything in particular. But I’ve been down that road before. I have my suspicions.

Unfortunately, that’s still largely all I’ll have to go on if my lingering symptoms take a turn for the worse in the future - suspicions and hunches and best guesses. No one knows if “chronic lyme” symptoms are caused by residual damage left behind from the disease, or by the disease itself still lying dormant inside, tucked away and hiding in other cells, only coming out when the conditions are just right.

But there's one thing I do know about my symptoms – they are real. And thankfully, my family and many others now believe that wholeheartedly and understand that the one thing we can all know for certain about Lyme disease is that we need to learn more about it.

So cheers to all who are joining the challenge, with limes up and cameras ready – the bite may be sour and the photo ugly, but may it make for a much prettier picture for those with Lyme disease in the future.

 

Laura Dunn is the Service Line Marketing Manager for Day Kimball Healthcare. She’s also a resident of Northeast Connecticut, a wife, mother and, of course, the Family CHO in her household. If you’re a fellow Family CHO, feel free to share and commiserate in the agony, defeat, trimph and joys of the job by commenting below, following posts at daykimball.org/FamilyCHO and/or subscribing to the monthly Your New Day e-newsletter. You may even pick up some new helpful health information for your family, too – word has it she’s got an inside line to the experts at DKH.