BLOG: My Eight Year Mystery Illness? It Was @#!%$ Lyme Disease

First, let me say that I don’t want to diminish other peoples’ suffering in terms of chronic or terminal illness with this story. I recognize that there are people who have far worse health challenges. But I want to tell my story because I know there are others out there like me—people undiagnosed with Lyme Disease, or living with Lyme who don’t  have to be.

In the whole of our entire planet, this is just one human’s little story. — Mitchelle

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Lyme Disease is caused by a Spirochete, a corkscrew bacteria. It’s closest cousin is Syphilis. It can impact the central nervous system, muscles, joints and even brain function. It’s a tricky little bugger and likes to hide from blood tests.

For at least the last eight years, maybe longer, I suffered from an unknown illness. It made me tired, a kind of unexplainable tired. Exhausted times 100, or maybe wiped out times a million.

Before I got sick, I was a runner and I played on a softball league. I loved Bikram Yoga and working out every day.

I had to quit running because my hips, knees and ankles hurt. Suddenly and terribly. In hindsight, they hurt whether I ran or not, so I’m not entirely sure why I gave it up, but I always felt like I had five or six broken bones. I told my doctor that I felt like there was a little critter in there, reminding me that something wasn’t right. When I moved wrong, it would scream at me.

I knew then that my symptoms comported with Lyme Disease, but every test I had came back negative and I never had either a tick or the bulls-eye rash.

My insurance company must have hated seeing my name come across on paperwork. I’ve had CT scans and x-rays and MRIs and even a nuclear bone scan, blood work, physical therapy, consultations with specialists.

All roads led to the same destination: there was nothing wrong with me.

About a year into my mystery ailment, I blew my knee out and needed ACL reconstruction. What has taken Redskins quarterback RGIII six to seven months to recover from took me years. It hurt all the time. I asked my orthopedist on multiple occasions whether he left something in there (it would not have shocked me to see a paper clip floating around on x-ray).

I had two follow-up procedures (knee debridement and a manipulation under anesthesia). It still hurt.

I felt like my doctor thought I just wanted pain medicine. I know there are addicts out there. But if you are in pain, you don’t want to feel like you have to beg the doctor to help you function.

During the many years that I was unwell, I took a lot of pain medicine, narcotic pain medicine. It was the only thing that helped. The notion that Advil or Alleve would even touch it was laughable. I never liked being on the pills or later the pain patch. I didn’t like the sensation of being foggy. I’m a mom and a writer, and those two occupations require clarity, not fog.

My body was just ALWAYS hollering at me—all the time. My joints, my muscles, the fatigue, it was difficult to take care of my kids, do my job, keep up the house and have some time left over for my marriage or for socializing.

I saw a pain management doctor for years. I eventually landed at a terrific rheumatologist in Annapolis who diagnosed me with Myofacial Pain Syndrome (MPS), which is kind of like Fibromyalgia but without the trigger points. I didn’t meet all the symptoms entirely, but it was enough to put me in the MPS box.

I was put on a pain patch and given muscle relaxants and anti-depressants that reduce nerve pain. I got breakthrough pain pills. I was a little panicked if I had to go somewhere and didn’t have either a plan to lay down or nap or the pills in my pocket.

The cocktail of meds worked a little. But it was always a game of balancing minimal activity with the right dose of medication.  I spent a lot of time working from bed or sleeping.

In fact, I went from a main hobby of exercise to a main hobby of napping.

I told my family that I felt like the grandparents in Willy Wonka and the Chocolate Factory. I just stayed in bed and when my family needed me, I held court propped up on a pillow.

I tried to just get past it. That is what you do when you play sports and your body says it has had enough. You get to the other side.

I had a baby without anesthesia, so I am not entirely a wimp. In fact, I come from an outdoorsy family. We camped. We played sports. We sport fished. We “shook it off.” I married an Eagle Scout! I had never had a time in my life when my body wouldn’t cooperate with what I wanted it to do.

Now, if you have a broken leg and people see you, they might think, “oh that poor dear has to walk through the grocery store in pain and limping all over the place.” But if you have Chronic Fatigue Syndrome or Myofacial Pain Syndrome or Fibromyalgia, people don’t see those things. There is a terrible stigma. In fact, many doctors and medical care professionals don’t even recognize them as true medical problems.

But that was my diagnosis and it was my burden to bear—even if I didn’t perfectly fit the parameters 100 percent.

My OB-GYN is a runner. As with many other doctors, I tried explaining to her just how much difficulty I was having with regular life, day-to-day stuff, vacuuming, staying awake. If the other medical professionals wouldn’t listen, maybe she would.

She blew me off.

This 2012 map shows the incidence of Lyme Disease according to Yale University. Lyme was first diagnosed in the 1970s in Lyme, CT.

This 2012 map shows the incidence of Lyme Disease according to Yale University. Lyme was first diagnosed in the 1970s in Lyme, CT.

“Get more exercise,” she said, explaining that she always felt better after going for a run or biking.

Great. More exercise. What a good idea. Wish I’d thought of it.

I wanted to scream, “I WANT to EXERCISE! LISTEN TO ME! I AM TELLING YOU SOMETHING IS WRONG WITH ME!!” But I’m polite. And I don’t think a doctor would like it very much if I started screaming at them while on their exam table with no clothes on.

If she only knew that I would go to spin class at my gym and afterwards sit in my car in a combination of pain and frustration and cry—yes, weeping, with sobs and tears and all. Blubbering. Stupid.

But I went to the gym faithfully, daily. It helped me maintain a sliver of sanity.

All I ever wanted was to get back to running and Bikram—to have a gorgeous spring day at the park with just me, my dog and my iPod, where I could sweat and think, clear my head. But you can’t run when you think that all of the joints in your body contain broken bones. It isn’t fun.

I tried vitamins. I tried juicing (great for weight loss, not so great for MPS symptoms).

Each year that it went on, I gained five or so pounds. I spent more and more time in bed.

It turns out Lyme can also make you gain weight because the little critters (they are a bacteria), help to slow your metabolism. So while my OB-GYN was seeing an overweight woman who complained about pain, what I really was was a person fighting an uphill battle against a spirochete that only antibiotics could cure.

I didn’t want anyone to know how much I was struggling. If a doctor didn’t believe me, why would friends or colleagues? Of course, I alluded to it, and my close friends knew something was wrong, but without a definitive diagnosis, what am I going to tell them? I am in pain and I’m tired.

Who isn’t?

My husband was a champ. He and the kids took over the grocery shopping, the laundry, the housekeeping.

I had a job at the newspaper (The Capital) as a columnist, so that was on my own time, mostly freelancing. I could nap and go out in the evening if I needed to. Time management was key. I never scheduled to go into the office and have an afternoon or evening event at the same time. I had to work around my  phantom illness—or take a ton of narcotic pain medicine—to get through it.

I started dealing with police for local crime stories and I always wondered if my name was on some nefarious list of people who get prescription narcotics.

But it was what I had to take, had to use, to make my life even remotely bearable.

Things seemed to get worse and better and then worse again. What was I doing? Was there a pattern? Could I stop eating gluten or dairy to make my body stop screaming at me all day?

I am sad to say that I did think about a future when I would have to figure out Kevorkian methods. Not in the immediate future, but I did think that if I kept getting worse, that I would have to come up with a way to end it when the pain meds stopped working, or doctors wouldn’t give them to me.

I actually got a lot done. In retrospect, I don’t know how I managed working at the Capital or later for AOL/Edgewater Patch while spending so much time either in bed or laying on the sofa. But when a new boss came at Patch who wanted me to be at meetings in Pasadena for lunch and then stay up for evening events, I knew something would have to give.

Could I tell a boss that I was unable to stay awake for more than four hours at a stretch? That I needed to be able to lay down a significant portion of the day?

I ended up quitting. It was too much with my deteriorating health and the increasing demands of the job. A switch in medication helped a little, but I’d never been on antidepressants. I wasn’t myself.

I stopped coaching and participating in my daughters’ sports and activities. I coped with other events that required me to be awake and upright by hoarding pain medicine and dosing it out in small doses throughout the day so that the pain and fatigue would stay simmering under the surface.

Of course, I’d pay for it the following week. I’d then have to ration my meds and stay in bed for days on end—the Willy Wonka grandparents lifestyle fully realized.

I’d get up for a hot bath. That was one of the things that really helped—an hour-long soak to break up the monotony of working from bed and sleeping.

We live in a pretty standard-sized, if not small, house. If I had to make dinner, I’d put the spaghetti on the stove and then instead of walking to the bedroom to lay down (which took too much effort), I’d lay on the kitchen floor, waiting for it to boil so that I could reach up and turn off the stove.

I was living with ridiculous fatigue. If existentialist German author Franz Kafka had written about chronic illness, he could’ve used me as a character. From the outside, I looked normal. From the inside though, there was all kinds of absurdity and turmoil.

I felt like I was missing something in my own constitution, some element of not trying hard enough. I felt like the various doctors I saw never heard me say how desperate I was to hear that there was something wrong with me.

I didn’t want MS or cancer or Lupus or any of those things, but at times, I felt like hearing a REASON for my health problems would be of some small comfort. Evidence-based medicine. You know, facts. Tell me I have “X” and I can deal with it. Tell me I’m a medical mystery and there is no telling whether I’ll get better or worse—that was difficult to live with.

Then, through my reporting connections, I talked to a woman who had been treated for Lyme Disease after a long and rocky road. Our conversation was crazily enlightening. She’d never tested positive for Lyme.

I had five negative Lyme tests.

She was diagnosed with Fibromyalgia and had been on a cocktail of medicines for years and years.

Same here.

She felt useless and hopeless.

Me too.

And then she found a doctor willing to treat her for undetected Lyme Disease. After a three-week treatment of doxycycline, a common acne antibiotic, she was better. Her life turned around and she was back to her old self.

I went to see my family practitioner. He knew of my orthopedists and pain management doctors and rheumatologists. He’d heard me cry on more than one occasion that I wanted to be off the pain medicine, that I wanted to know what was wrong with me.

He alerted me that Lyme is very controversial. There are big fights going on between traditional physicians and what some infectious disease/Lyme Disease advocates refer to as “Lyme Literate” medical doctors (LLMDs). Some physicians treat long-term undiagnosed Lyme Disease as a chronic illness, with various cocktails of antibiotics.

Long term antibiotic treatment is not supported by the Centers for Disease Control (CDC). The CDC recognizes a syndrome associated with post-treatment Lyme Disease, but has not established any kind of pharmaceutical treatment protocol—specifically long-term antibiotics—to treat it.

A 2009 movie, “Under Our Skin,” follows the controversy surrounding treatment of Lyme Disease. It was nominated for an Academy Award, and won numerous film critic awards, but was not widely distributed. You can watch it online for free.

Some doctors will treat patients who ask for antibiotics in the absence of a positive Lyme test, but many symptomatic patients don’t want to go on antibiotics if they haven’t tested positive.

To boot, the tests are very confusing.

One local doctor (not my own) told me that Lyme Disease is mystifying for physicians as well as patients. There has been more Lyme Disease in Anne Arundel County, but there isn’t a map to say where you might get it and where you might not. Is Deale safe but Edgewater bad? Can I get it in Cape St. Claire but not Cape St. John?

Plus, the bulls-eye target that you hear so much about—an early warning sign of Lyme Disease—doesn’t happen in all cases. In addition, if you get bit in an area you can’t see, who knows whether you got the bulls-eye. Do you check your scalp for red rashes on a daily basis?

The bulls-eye target rash doesn't always happen.

The bulls-eye target rash doesn’t always happen.

I never got the bulls-eye rash that I could see. I never took a deer tick off of my body.

But my doctor did treat me. I got a 21-day dose of Doxycycline, which I took morning and night.

The beginning was rough. The antibiotics seemed to make me have a terrible flu. My symptoms seemed to worsen. But after I got through the first week, something happened. Something big changed. I could stay awake all day. I could remain upright while driving in the car without shoulder, back and neck pain (and having to slump over the wheel at intersections). I could do yoga and spinning and the elliptical at the gym without my muscles and joints shrieking in agony. I’ve lost 23 pounds.

I finished the antibiotic protocol and returned to my rheumatologist. I wanted to get off all the medicine ASAP. I wanted to just quit it all cold-turkey. But, that is not so easy with long-term narcotic use. I’d have to wean. We worked out a plan. It would take four weeks to get off everything.

“But don’t think it will be easy,” she warned.

Great. I feel better, but now I’m going to be stuck on these stupid meds for another month? It seemed an eternity—and what if I’d become an addict? Could I even kick this stuff?

Each week I backed off a little more and a little more. By the fourth week, I felt like I could let go. I did.

It’s been smooth sailing. I was so anxious to get off of the medicine that I weaned myself early. I wasn’t addicted (thank goodness).

Now, I get up and get my kids their breakfast, work in the garden, go on an interview, write a story, go to the gym, go to the store, do laundry, clean the house, make phone calls, make dinner, socialize in the evening with friends, and then. And only then. Go to bed.

That’s right. My victory is getting up at 7:30 a.m. and not going back to bed until 11 p.m. But it is more than that.

I never realized how depressed I was. How much not knowing what was wrong with me weighed on my psyche.

One thing is sure: Lyme disease sucks. Add to that: I hate #@$%^ Lyme Disease. I wouldn’t wish it on my worst enemy. It is in our area. It’s easy to get—and sometimes hard to diagnose. However, it is surprisingly easy to treat—especially when caught early.

I am so grateful to my family doc for getting me the treatment I needed. But at the same time, I’m very frustrated that I lost so many quality years of my life. I’m 47 now. I can’t turn back time, but I wish I’d have known sooner.

There are Lyme Disease support groups that meet in Annapolis at Anne Arundel Medical Center and there are tons of resources on the web.

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About Mitchelle Stephenson

I've gotta tell Mitchelle! Send your South County news tips, brag on your fab volunteers, talk traffic, police and fire or just say "howdy" to Mitchelle Stephenson, co-founding editor of the South River Source. Mitchelle@SouthRiverSource.com or reach me in person on mobile: 410-353-4706.

7 Responses to “BLOG: My Eight Year Mystery Illness? It Was @#!%$ Lyme Disease”

  1. Mitchelle, Thank you for writing about your story. Similiar course in that kid got really sick, didn’t get better, increasing odd symptoms, debilitation, series of diagnoses that didn’t pan out, nothing working. Another mom found me searching NDPH and told me about Lyme disease and co-infections. She turned out to be right. Another mom pointed me towards the doctor who was able to make my kid better. Many wonderful people, who themselves were suffering from Lyme disease and co-infections, shared their hard lessons learned with us and helped us through this mess of a disease.

  2. Almost all of this article is very similiar to how my life is and has been for 10 years now. My son and husband have it as well but not as bad as I have. They have suffered for two years to my ten. My one problem with the entire blog is that you made it sound like 3 weeks of doxycycline will fix it all. That is so far from the truth. There is no way that anyone who has had lyme for that long could be cured in 3 weeks of doxy. I have been taking my meds for lyme and the coinfections that come with it for 2 years now and I am only 50% better. I have babesia which is a terrible coinfection that makes my neck and back hurt 24/7 and yes, pain meds are part of my life that I wish were not. I take pain meds to live, I do not live to take pain meds as my extended family thinks I do. They are so afraid of people being addicted to anything like my mother was to alcohol that they will not speak to me. There is so much about the treatment of lyme and coinfections that has been left out of this article. I must give credit to the author that this is the closest article written about my life than any other article so far. I just wish the treatment plan was correct. Thank you so much for writing this!

  3. I certainly didn’t want to put it out there that my story comports with everyone’s Lyme journey. Far far from it. I have interviewed so many people in order to do this story, and written enough words to fill a novel.

    It is an incredibly difficult story to write because it is so complex and involves medical issues that are beyond my ability to fully comprehend.

    That is why I wrote this as a personal essay instead of a news item.

    My problems responded quickly to antibiotic treatment. I can’t tell you how grateful I am for that to have happened, especially after interviewing people who have Chronic Lyme and co-infections. But that is a different story. Not my story.

    I don’t know why or how I responded to treatment so well, but that is my journey.

    As I said at the beginning, this is just one human’s perspective from one little corner of the world.

    I hope this blog starts a conversation between patients and physicians, as well as legislators and health policy folk. It is tough, a really tough topic.

  4. cbgibson: there are many stories that you may find mirror yours. Have you read “Cure Unknown” by Pamela Weintraub? and “Sick and Tired” by Helene Jorgensen?

  5. carrottop11407 June 26, 2013 at 11:41 PM

    Wow! Incredible story! I was diagnosed with systemic lupus but have not had all of the markers. This makes me wonder, truly wonder “if, maybe, could it be?”.
    Thank you for your honesty regarding pain medications and what it is like living a life where you depend upon them and just how much you wish you did not have to.

    Superbly written!

    • Thanks Carrottop11407! Best of luck to you in your health challenges.

      I certainly feel for you. The response to this story has been overwhelming and very emotional for me. The kind phone calls, comments and emails of others sharing their stories of chronic pain has left me with zero doubt that writing and publishing my own story was the right thing to do.

      I struggled with whether to tell my own story, and I’m really glad I did. There is clearly a need for a wider conversation.

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