Living With Lyme: Linked Takes on Ticks

Well hello there! At High Five Media we know the importance of good old fashioned content which is why we've started this little blog.  It will be filled to the brim with relevant information about marketing, social media, sales, photography, videography, unicorns and everything in between. 

To kick things off, we'd like to do a little showing off (sorry not sorry) with an article from our hyper-local magazine, Linked. In it, our super talented editor-in-chef, Meg, writes about three individuals living with Lyme disease in Oklahoma.  We think the article is well written and super relevant. Enjoy!

Living With Lime

THREE OKLAHOMANS TELL THEIR STORY

Until several years ago, Clay Baker's morning routine mirrored what many working adults do each day. He got up, got dressed, and stopped by his favorite coffee shop before getting to work by around 7a.m. He easily kept this routine for years because, as an active father and husband, it just made sense. What didn't make sense was the day he woke up to a clock that read "2:00 p.m." Now any parent of teenagers dreams of getting to sleep in, but for Baker this was alarming—it was a Monday, and he couldn't bring himself to get out of bed.

This mysterious fatigue continued to worsen. Some mornings he could barely get himself up and out the door, only to sit in his truck at the coffee shop, willing himself to gather the strength just to walk inside. Some mornings, he never made it out of bed. He didn't know it at the time, but Baker was adjusting to life with Lyme disease—and it wasn't easy.

The symptoms—sometimes a bullseye rash, unexpected fatigue, unexplainable joint pain—are all things that most people have experienced at one point or another in their lives. But when Lyme disease takes hold - which sometimes takes days, weeks, or even years—and these symptoms hit simultaneously, life itself seems like it is slipping away.

The most common symptom for Lyme disease is joint pain.  Often described as “bad arthritis” this pain can and does occur in any part of the body.  After joint pain, fatigue is the next most common symptom. This is commonly misdiagnosed for chronic fatigue syndrome instead of being seen as a symptom for an underlying cause. The third most common symptom and one that can be especially frustrating is brain fog or loss of cognitive abilities. Memory loss, trouble thinking, forgetting the name of a person that you have daily interaction with can all occur. Other symptoms include neurological problems like muscle weakness, twitching, burning, itching and possibly seizures. Cardiac issues are also common.

Additional symptoms that can occur, but are more alarming, include twitching around the eyes, Bell’s palsy and ringing in the ears.  Sometimes all symptoms will be worse first thing in the morning or during colder weather.  A final symptom to look for is when a patient has been to good or multiple doctors for treatment of symptoms, but the underlying disease is still unknown. Hypochondriacs, Lyme disease patients are not. These symptoms are much more severe than general aging, stress or depression. 

When doctors' tests kept coming back negative for chronic illnesses, Baker's initial alarm turned to confusion and fear.  The big one—cancer—was ruled out early on. This brought relief and concern at the same time, because what else could cause all of these horrible symptoms? As more tests went on and the symptoms continued to emerge, traces of some kind of chronic illness began to show.  Blood tests that check for inflammation, like the Sed rate and CRP tests, all came back positive. 

Ironically, a positiveSed rate or CPR test is a negative thing; it’s a pretty good indication that the patient is very ill. Patients who test positive on these tests have a range of problems, from heart disease and other chronic pains or have a sedentary lifestyle. For two years, due to these positive test results, doctors continued to treat Baker for symptoms without looking for an underlying cause. A Lyme disease panel was also done early on in Baker’s illness, but it came back negative.

Rheumatologists, neurologists, endocrinologists, cardiologists and over ten internal medicine physicians, were all running tests, and none were sure they knew what plagued Baker. 

Instead, Baker began treatment for rheumatoid arthritis which included biologics like Enbrel. Methotrexate, an immune suppressant and high doses of steroids like Depo-Medrol and Prednisone were also prescribed to begin suppressing Baker’s immune system. These medications worked in conjunction to suppress Baker’s immune system to a point where it was no longer able to fight off the bacteria that causes Lyme disease. Baker was with diagnosed with rheumatoid arthritis by four different doctors in Oklahoma and sought another opinion with a leading rheumatologist at John’s Hopkin’s Medical Center in Baltimore. After three days of tests, Baker was told that he did not have rheumatoid arthritis or any other autoimmune disorder. Without an immune system to fight off the bacteria, the Lyme disease was able to go unchecked for months. After over a year of treatment, he did not return to another doctor for over two years.

These missed diagnoses and focus on treating symptoms instead of an underlying cause take as much a toll on the mind as they do the body. That isolating feeling of knowing something is wrong, but not being able to do anything about it, wears on the mind, while the body experiences, as one Lyme patient describes, “the worst flu you’ve ever had or the longest, hardest case of mononucleosis anyone has ever had."

Why, with advances in modern medicine, and an incredible track record for keeping people alive, is it so hard for Oklahoma doctors to get a proper diagnosis and treatment for a disease that has been identified and studied for over 33 years?

“It’s similar to when you’re sick with the flu, and you have no motivation to get out of bed or off the couch because you’re so tired and achy and sleepy all the time, but still feel exhausted when you wake up,” Baker said. “Except it’s like that all the time for us; we still have to go to work; we are expected to function in society even though we are very, very sick people.”

Many people live with Lyme disease and go undiagnosed. In fact, Baker's diagnosis was the only one confirmed by the CDC in May 2013.  It was extremely odd for the Lyme panel to come up positive. For this to have happened his immune system would have had to be actively producing antibodies against the bacteria. Considering his prior diagnosis and subsequent treatment to suppress his immune system, the chances were small that the panel would come up positive. Both sides of his western blot test were positive at two different labs.

Rick Harris, like so many others, went undiagnosed for years until finally receiving a diagnosis. He began feeling ill after receiving a blood transfusion during a surgery in December 2010. By May of 2012, he was being treated for “tick-borne illness,” and received a positive diagnosis for Lyme disease. How he contracted Lyme disease is controversial; however, Lyme disease is a blood-borne illness and currently, blood transfusions are not screened. According to the CDC’s website, no cases of Lyme disease have been linked to blood transfusion, but scientists have found that the Lyme disease bacteria can live in blood from a person with an active infection that is stored for donation. 

Harris has been a basketball coach for over 20 years.  Before Lyme disease took hold, he was the head coach for Putnam City North boys’ basketball team. In the winter of 2011, he was hospitalized due to internal bleeding. He required blood transfusions and emergency surgery. While his team was fighting for a spot in the playoffs, Harris was bedridden and fighting for his life. Harris’s life went from an active father and head coach and an extremely athletic individual to being lethargic and concerned for his life. 

After years of symptoms like heart problems and invasive procedures like spinal taps, several rounds of strong antibiotics brought Harris back to health. With joint pain and fatigue seemingly at bay, he felt well enough to wean himself off of them.  However, in the winter of 2014, he caught a simple cold. For Rick and others with Lyme disease, a cold can escalate quickly. He got so weak that he couldn't even hold a cup of water to take his medication. 

Lyme disease affects each person differently. Rick treats his inflammation - one of the major symptoms of Lyme disease - with a strict diet. Sugar, caffeine, gluten, and anything that could cause inflammation, are off limits for Rick. He’s even gone so far as to avoid plants and vegetables from the nightshade family, which include potatoes and tomatoes. 

“It’s like turning on the oven and having the fire department show up,” Rick said of his immune system's response to Lyme disease.

Because of the nature of the disease, no two Lyme-positive people will have the same symptoms or experiences.  For Rick, the joint pain, chest pain and weakness appear to be the most problematic aspect of the disease.

For Melinda Meadows, however, the cognitive problems pose a serious threat to her quality of life.

Plagued by a mystery sickness she just couldn't shake, Meadows went to dozens of doctors and specialists, just like Baker. She was subsequently diagnosed with chronic Epstein-Barr Disease, arthritis, and fibromyalgia. One doctor even told her she was "just getting older" when she complained of joint pain, fatigue and cognitive issues.  

For the record, Meadows looks great. She was more active than most 20-year-olds.

 She’s clearly a fit person who, before contracting Lyme disease, lifted weights, worked out and ran trails around the metro on a daily basis.  In fact, she was running through Martin Nature park in NW Oklahoma City when she was bitten by a tick carrying Lyme disease. 

Since then, her energy has decreased, she can’t run and she relies on Post-It notes to remind her of names and details of people she has to talk to on a daily basis for work. To try and keep things normal for her husband at home, she still tries to cook dinner most nights, but admits that it’s a daily struggle to find the energy.

Meadows, like Harris, has taken every precaution to rule out other illnesses, including keeping a strict diet free of inflammatory foods.  At the time of this article she had purchased a juicer to begin adding even more inflammation-fighting foods into her diet. 

Meadows has also lost the feeling in her hands and gets tremors that leave her shaky.  Epsom salt baths, which can help with some of the symptoms like muscle and joint pains, have helped a bit.  

No one without the disease can begin to comprehend the kind of radical lifestyle changes it forces upon those who have it. The fatigue that sets in isn’t helped with hours upon hours of rest(that’s the only thing a Lyme positive person feels they can do). Choosing to join family and friends for a simple cookout, for example, means they'll likely spend days following it recovering from the fatigue.  It's a disease that takes a toll on everyone around them and families become their champions; spouses and children become acutely aware of how sick their family member is after seeing them go from an active participant in life to a passive individual struggling to find the energy to just get through each day.

Why is it so hard to diagnose this disease? A recent study by the CDC released in July 2015 has shown that Lyme disease is spreading because the habitat of the ticks that carry Lyme disease is spreading—in some areas at an alarming rate. Luckily, most of these areas have seen documented occurrences of Lyme disease, so physicians and urgent care clinics know what to look for and to start treatment early.  

However, in Oklahoma that is not the case. Oklahoman physicians are not trained to look for Lyme disease, in fact, a crucial step to detecting—testing—is so misunderstood that unless doctors have real-life experience with the disease, the chances of catching it and getting a positive diagnosis are slim.  According to the Oklahoma Department of Health, Lyme disease is thought to go underreported in Oklahoma because of this testing procedure.

On one part of the CDC’s website explaining the testing procedure, it instructs doctors to test a patient as soon as they come in presenting symptoms; however, on a second part of their website addressing testing efficiency the CDC mentions that it takes several weeks for a positive test to occur. This is because the tests that are most often used test for antibodies for the bacteria and not the bacteria itself.  The next step in the flow chart depicted on the CDC’s testing procedures web page is to either test to confirm the diagnosis in the event of a positive test, or to consider alternate diagnosis in the event of a negative test.  When physicians are not properly educated this can lead to more misdiagnosis and unneeded, sometimes dangerous, treatments for ailments that Lyme-positive people are commonly given.

To add insult to injury, the CDC does not fully acknowledge that long-term, or chronic, Lyme disease exists; the general thinking is that in areas where Lyme has been identified and where physician knowledge is high, early and effective treatment is administered.  Due to Oklahoma’s lack of physician knowledge of Lyme disease, this is rarely the case. Just in July 2015 did the CDC publish a study acknowledging that Lyme patients who, for all intents and purposes, are “cured,” can still have arthritis-like joint pain that can be attributed to having Lyme disease. The protocols for Lyme disease set forth by the CDC are completely focused on short-term treatment(14-21 days) and cure. Long-term management and treatment of Lyme disease means long-term antibiotic use, which has little protocols or guidelines from the CDC.

There is much controversy about over-use of antibiotics. Fears about antibiotic resistance and “super bugs” are not new.  The CDC attributes over 20,000 deaths per year to antibiotic resistant illnesses.  However, using antibiotics long-term is the only viable treatment for Lyme disease patients that do not get the correct diagnosis early.  While there is an inherent risk of developing antibiotic resistance to certain drugs and developing an infection, Lyme patients should be given the option to take that risk without losing insurance coverage or getting the doctor who is treating them in trouble, which are two very real risks associated with it.  When given a choice of living a life basically disabled from a curable disease or having a risk of getting a potential antibiotic resistant infection, a Lyme positive person will almost always choose taking the antibiotics.  This is a choice that should not be made for them and is the only option known to get people to a symptom-free stage of their disease.

As Oklahoma becomes a more welcoming habitat for Lyme-carrying ticks, we will need to train and advise our medical institutions to detect the disease. Without proactive steps to educate doctors and the public alike, stories like Clay Baker’s, Rick Harris’ and Melinda Meadows’ will become more frequent in Oklahoma. Like them, future patients will only be able to hope to manage debilitating symptoms. If we don't take Lyme disease seriously, undiagnosed Oklahomans will continue to seriously suffer.

Written by Meg McElhaney