Gwyneth and Teddy, April 2009

I interviewed Gwyneth about her experience with Lyme and her message of hope. Here is what she told me.

First signs of Lyme

It was October 2006. At this time, Gwyneth was a full-time drama teacher to about 300 kids. She had just fulfilled one of her life-long dreams to own a dog, a big rescue dog, which the family named Cy. It was pure love! She had wanted a dog for the longest time and she finally had her dog.

Walking him every day was a something she really looked forward to. However, at this time she started to develop what were considered classic, textbook symptoms of Multiple Sclerosis (MS) including more of the obscure symptom of MS that weren’t found in textbooks. The symptoms came on fairly quickly; having really bad dizzy spells, inability to think clearly, and debilitating fatigue (however, she had no joint issues or any other issues associated with Lyme). She went to her primary care physician (PCP) who thought she might have MS, and scheduled a MRI two months later. Living for 2 months with the idea she had MS and through searching for information about the disease online, she was convinced she really had MS. She also started to experience phantom images in the corner of her eye and started walking with a cane.

When the day of the MRI finally arrived, she was told she did NOT have MS and the neurologist instead diagnosed depression. Though she was thrilled to learn she did not have MS, Gwyneth was confused by the diagnosis of depression. By this point, she was walking with a cane and too sick to work more than two or three days a week. As a performer as well as a drama teacher, she was scheduled to be in a show and had to drop out, as she couldn’t manage it with her energy levels or levels of concentration. This did not seem like depression to Gwyneth, but she felt she had to trust her doctor.

There were, however, nagging doubts in her mind that this wasn’t really the problem. She wanted to accept the doctors, even going out to celebrate with her husband the fact she did not have MS but depression instead, but started to really go downhill after that.

She was now unable to walk the dog that she loved and wanted for so long. As the difficulty to walk the dog only increased and she realized she could no longer care for him, Gwyneth made the difficult decision to return Cy to his foster mother, who eventually adopted him.

The Lyme Diagnosis

The turning point was one Sunday, in February. In the middle of church service, Gwyneth became terribly dizzy and had no idea where she was. Terrified, she went to emergency room. She was really emotional and crying. It felt like she was losing her mind, not as though she were going insane, but that her brain was dying; her mind didn’t belong to her anymore; it felt as though something was eating away at her brain. The ER doctor sent in another doctor who started talking to her as if she was about 8 years old; how depression hurts, how she should go home and rest, that this is what depression is about. At this point she said, “This is bullshit!” From that point onward, she started looking for an alternative doctor, someone with a more holistic approach. That’s how she eventually found the doctor that treated her and restored her back to health.

First, she had to switch her primary care doctor in order to be treated by him, as her PCP would not refer her. After speaking with her new doctor for about five minutes he suggested that her illness might be Lyme; she informed him that it couldn’t be, she had already been tested for Lyme and the test came back negative.

The doctor then told her, “So what, even if you’ve been tested, Lyme testing is so inaccurate” and started her on tetracycline.

For the first two days she was intensely ill, and Gwyneth questioned her doctor’s decision to put her on the medication. On the third day, she felt as though she had been magically cured - all her symptoms were gone! She thought it would be more gradual, that it would take two or three weeks to recover, but this was almost instant, like being totally symptom free after 4 days of starting the medicine. As neurological Lyme can clear up faster than other forms of Lyme, this proved to be the case for her.

Gwyneth and Teddy, April 2009

Hope throughout a turbulent time

During her struggles with Lyme, from October 2006 until present day, her students were and continue to be a huge inspiration to her. She always felt well liked and respected as a teacher, the students really seemed to like her classes, but after being so sick, the kids showed her so much caring and love, which you wouldn’t think of from middle school kids! “They were great, like cheerleaders for me”.

Throughout this time as well, her husband was never condescending and never gave in to the initial diagnosis of depression that the neurologist gave.

Her children, both in elementary school, were really brave, having to watch their mother go downhill so quickly, and they coped so well with. Her family’s support was instrumental in helping Gwyneth on her journey towards wellness.

Once she started the treatment with the holistic doctor, she recovered very quickly, which was a huge inspiration when compared to how sick she could have been.

Then there was the constant thought about having another dog once she was well enough to once again look after one and take part in long walks. And not just any dog, but a big dog! (In fact, this has come off; she now has Teddy a golden retriever!)

Inspirational sustainment

Once she started the treatment with the holistic doctor, she recovered very quickly, which was in inspiration when compared to how sick she could have been.

Other thoughts

To finish up the interview, I asked Gwyneth if she had any other thoughts around this subject. Similar to myself, she does feel that she will always be living with Lyme, but has developed strategies to manage it. One strategy involves awareness, for example, around stress. Stress has to be managed and realized. She can only choose productions that will be easy to deal with and straightforward. Housework isn’t the first priority and though it gets done, it’s not with a manic need that once was there. Managing stress and resting up are the keys to maintaining her health. She also drinks more water, and maintains a regiment of vitamin supplementation.

Stress is the number one issue she deals with; when she was stressed out earlier this year, she had a reoccurrence of the dizziness and other symptoms and went back on tetracycline.

Not shy about telling people about Lyme, she talks about it because it seems there is a lack of understanding about the disease and to promote the fact that even if someone has the symptoms of Lyme and test negative, they should still seek a second opinion about it.

Being your own self-advocate is crucial. If you suspect you have Lyme, you should follow up on it and continue to bring it to your doctor’s attention and TRUST yourself!0

Tweet This Post 

Portrait of Karen, April 2009

I recently interviewed Karen about her experience with Lyme and her story of hope. Here is what she had to share with us.

First signs of Lyme

As a school teacher, about one year prior to the diagnosis of Lyme (May 2007), she noticed she was constantly tired and continually getting sick, going from one cold to another, one flu to another. She started to suffer shortness of breath and thought she might be developing asthma. Her heart then starting missing beats, which brought her to her doctor who ran all the tests for this type of ailment but found nothing at all. She then went to the ER after a frightening episode and again nothing wrong was found. She was given diagnoses of anxiety. Her doctor prescribed Lexipro for the “anxiety” and when she took the first dose, experienced the first of many severe paradoxical reactions drugs and medications. She had to take a month off work to recover and, and then started back teaching part time, but by this time symptoms of cardiac and neurologic Lyme had developed and she had to stop working again.

The Lyme Diagnosis

In May of 2008 a clinical diagnosis of Lyme was made by a naturopathic doctor who referred her to a Lyme literate doctor in Southern Maine for treatment. After further testing, she was put on antibiotics and the Zhang Protocol, but after several months, she was taken off the antibiotics, and remained on the Chinese herbal medicines. After about 4 months she started to feel better.

Hope in frightening times.

Throughout all of this, it was hard to maintain hope and during the first months she felt she would never recover. However, her husband was a greatest giver of inspiration and motivation. She’d ask him if he thought she was getting any better and he would say, “Yes, you’re up and moving more and you’re able to do more, I think you are a lot better, it is just going to take time.” Over and over again, she needed to hear that.

Two people in particular, both familiar with Lyme and willing to talk with her at any hour of the day helped her through countless frightening episodes. One was her naturopathic Dr. and the other a local support group coordinator who has Lyme herself. Their availability during the first bewildering months was a gift she feels she can never repay.

Her friends and prayer partners were wonderful. And as she went through her battle with Lyme she drew closer to God and found in Him the strongest source of comfort and encouragement.

Words of inspiration from a friend

During one memorable visit from friends, she was encouraged by a mother whose son also had Lyme. She told Karen, “Your life isn’t wasted, God never wastes a life. Find the joy in each day. This is just a season of life you are going through and it will pass. Anything that hits us comes through God’s hand - let him work his plan for you. This isn’t a bump in the road that got you off course, it is the course. Live it! Some really important things are happening to you right now.” She said, “Don’t make this illness your job. Don’t dwell on it - reach out and connect with other people.”

Final thoughts

Throughout the darkest times dealing with the disease, Karen feels it would be helpful to have a Lyme buddy system so that you could speak with someone who has had the same symptoms you are experiencing and has been where you’re at and could give advice and encouragement. (I’m working on that one, Karen!)

Although expensive, she feels that there should be some kind of hospice care for people with severe Lyme symptoms or perhaps creating some type of home support for people who are alone with severe Lyme. Even a daily phone check would be extremely helpful and reassuring to homebound cases.

Karen feels that awareness of the unique problems of dealing with Lyme needs to be raised. People with Lyme do not recover overnight and it is often taxing and frightening to care for someone with Lyme. The best encouragers and supporters are those who have experienced Lyme themselves. She would like to put her experience with Lyme to use by working with Lyme support groups.

Tweet This Post 

Portrait, April 2009

I GOT IN!!!!  I’ll be running in the New York City Marathon, November 7, 2010 to raise awareness about long term Lyme Disease. I have never run more than ten miles in my life, so this should be exciting, but someone has to do it, right? Follow me on Twitter http://www.twitter.com/lymerunner for quick updates. I’m also working on a website, http://www.lymerunner.com to promote this event also.

——————

Quick Edit to original story Oct. 2009: I have now been off all Lyme meds since April 2009.  I’ve just celebrated my 45th birthday yesterday, and my one wish for 2010 is to train to run a marathon to raise awareness of the existence of long-term Lyme Disease and that when treated long-term, how the effects can be managed.

——————

To commemorate Lyme Disease Awareness month, and in honor of all those living with Lyme, here is my story.

In August of 2007 I had just completed three things on my life’s “to-do list”;

1. Kick through a solid 1/2″ piece of pine to obtain my brown belt in Tae Kwon Do;

2. Appear on stage in a solo dance performance;

3. Run the Beach to Beacon, a 10k race (which I had completed in 54:51.8 - wah-hey!).

If you noticed my list has a common thread, well done. On top of a full-job and raising two boys, I’ve always been a bit of an athlete; as a child I did gymnastics, tennis, dance, really any sport going. As an adult, I ran, went to gym regularly, attended dance class and participated in TKD three times a week. I’d always been physically fit, cherishing this as my link to sanity and well being.

First signs of Lyme Disease

The day after completing the Beach to Beacon, Aug. 4th, 2007, the area surrounding my right knee started swelling. Having injured my right knee several years earlier in another running incident, I thought “no big deal; with a couple weeks of OT and rest, I’ll be fine”. I started therapy but after 3 weeks the swelling hadn’t gone down. During this time, I also started to notice that my shoulder joints were becoming  sore and it was becoming difficult to sleep on either side due to the shoulder pain. The OT’s were baffled as to why the swelling in my knee, now very noticable even through trousers, wasn’t getting better and scheduled a MRI. The pain in my leg  flexuated  from highly uncomfortable to completely unbearable. I had been on Aleve and ibeprofen for weeks without it touching the pain or swelling and hoped the MRI would finally pinpoint the problem.

The MRI showed no major injury, just unspecified inflamation. It was now September and my boys were back in school. At this stage all my joints  were sore. To top it off, I seemed to have come down with a stomach bug or some kind of “flu” as I felt run down, constantly tired, sick to my stomach, and I started to have bad headaches.

The breaking point came one Saturday morning in mid September. After bed hopping most of the night before, trying to find the best mattress in the house to sleep on (by this time I could barely sleep for more than an hour at a time at night, needing to roll over to alleviate pain in either my shoulders, back, or hips.), I settled on the bed in the spare room. The phone rang at 8am that Saturday morning, I tried to get out of bed to answer it but couldn’t. No matter what I did I could neither push myself up on my elbows to get up nor swing my legs around to get up. I was in so much pain I had to scream to my husband to come  get me up. Now I knew things were SERIOUSLY amiss. As it was the weekend and I didn’t want to go to the emergency room so decided to ride it out until Monday. Then, out of nowhere,  a huge and ugly red ring appeared on my upper arm. I had NO IDEA what it was and had NEVER EVER CONSIDERED LYME. I knew next to nothing about the disease bar how it was “transmitted”. As I felt my whole body falling apart, I thought, geez, what now?

The Lyme Diagnosis

My primary care physician (PCP) quickly suspected Lyme but wanted to have it confirmed by an infectious disease (ID) specialist and some blood work. When I arrived at the ID doctor’s, he confirmed the initial Lyme diagnosis, told me I’d be absolutely FINE after 3 weeks on antibiotics, and sent me off with a prescription. Three weeks later I was anything but fine! I was more sick than I’ve ever been in my life and could barely move. I could no longer raise my arms up over my head, dress myself, move my neck / head from side to side. September passed into October. I tried not to dwell on the fact that just two months prior I was a top athlete now reduced to a near invalid.

I phoned my PCP back and explained to her that I thought I needed more antibiotics and described what was going on. She told me I had to go back to the ID doctor as he was the one who diagnosed Lyme and had prescribed the antibiotics. Feeling hopeful that he’d be able to help me, I phoned him. I explained that I felt even worse than before, was more of an invalid than before and asked what he thought I should do. Then he dropped a bombshell: He said: “what you are experiencing now has NOTHING TO DO WITH LYME; we all have aches and pains and you are simply experiencing the effects of old age (I was only 43) and arthritis (though none of my blood work showed anything arthritis related) and you don’t need anymore antibiotics!” Reeling from the shock of what I had just heard, I tried to explain that I found the arthritis pretty hard to believe as I was, two months prior, so physically active; heck, I ran a bleeding 10k race! That was a waste of breath, he had already hung up on me.

I never felt more alone in all the world as I lay on my couch in disbelief and shock, wondering what the heck I was going to do next. I knew my PCP and this guy weren’t going to help me get better, but I had no clue as to how to help myself.

Now, I could go on and on about the pain, misery and fear I went through, how it affected every aspect of my life and the life of my family, but that’s not the point of this project, so read on.

By a stroke of pure fate, too long to go into here, (but believe me when I say pure fate), I was given the name of a doctor who could help me. I started seeing this doctor in mid Nov. 2007. In my naivity, I expected to get well in a month or possibly two once I started treatment. What I wasn’t prepared for was the long year and a half ahead of me. Suffice to say, it was an interesting journey, filled with ups and downs and interesting discoveries (even things I had to laugh at during the time, i.e. once I was detoxing in a dry sauna and thought: I must multi-task, sauna’s are boring, I’ll just read a bit! I brought a book “The Road to McCarthy” by Pete McCarthy, (a truly fantastic book I wholly recommend, though this particular copy belonged to my husband..), into the sauna to read when I noticed the book seemed to have some loose pages. It took me a while to cotton on that it was the heat of the sauna melting the binding, causing the book to fall apart - yeah, I again had to laugh at my naivity and stupidity!).

Portrait of the author with her running shoes; symbols of hope in her fight with Lyme Disease: April 2009

Hope in the face of Lyme

My whole purpose in writing all this, though, is really to give hope, so here is my statement of hope: After going from being incapable of dressing myself, getting upstairs on my own, going through detox strategies, etc., IT HAS NOW BEEN 14 WEEKS (since the time of posting this article) THAT I HAVE BEEN OFF ALL LYME MEDS… and so far so good. I am back to most of my ‘pre-Lyme” activities; Tae Kwon Do, dancing, and MY LIFE SAVER, RUNNING! In fact, I have been training to run the Beach to Beacon again, can run 4 miles at the same pace I did prior to Lyme (and I’m two years older!!!), and I’m almost running a single mile faster than I have since I started running as an adult!

Deriving Hope and Inspiration

First of all, I just KNEW the infectious disease doctor was WRONG! How could I have become arthritic to the point of being unable to get out of bed unassisted in the course of a month and a half when NONE of my blood work showed any signs of rheumatoid arthritis? As an athlete, you KNOW your body. You know the difference between a muscle ache and a torn ligament!! I knew what was going on wasn’t “old age”! So, my hope, the one I clung onto during this time, was to prove the ID doctor wrong and to one day run again and participate in the activities I so enjoy!

After receiving prolonged treatment, I was able to return to the gym in February of 2008. Okay, where I once could curl 20lbs easily, I had problems lifting just 4lbs for months, but I hung in there because at least I COULD lift 2lbs in each hand and saw that as REAL PROGRESS! The encouragement of my family was super crucial; every day they saw small improvements and brought these to my attention. Where I once couldn’t squat down to pick up something off the floor, by July of 2008, I could. Though I really felt like I couldn’t run again, my curiosity got the better of me and I tried to run a mile on a treadmill in the basement. I ran my first mile in Feb 2008 in…drum roll…… 45 minutes (I could have walked it in the same time or maybe faster???). That alone inspired me to continue to try every day to improve on that time. By March I had the mile down to 35 minutes, by June, I could run it in 10 minutes! Seeing that I COULD actually regain what I had lost gave me tremendous hope and inspired me to continue to strive to do more.

Also, I don’t think I would be where I am without the support group of people I had not previously met nor might have never met should it not have been for Lyme bringing me to them.Their selfless sharing and reaching out sustained me throughout. I also clung to the idea that something positive would have to result from this experience. By sharing my story and other peoples stories during the month of May (and beyond), I hope to give others in my situation a glimmer of hope and to educate others about the effects of chronic Lyme.

Life changes and modifications

Granted, my present-day well-being has come with a price. I’ve had to modify my lifestyle to maintain this state of well-being. I can no longer have late nights, excessive stress, or “over do” it on a continual basis. I now realize that when I’m tired, I need to rest; when I’m stressed, I need to let go; when things are out of my control, to say “c’est la vie” and let it stand at that. I’m learning to live with Lyme but  not let Lyme become my life.

My message of hope to anyone out there is to believe in yourself, trust YOUR instincts, when in doubt, seek a second opinion. Educate yourself, be your own advocate and above all, don’t settle for a diagnosis you know in your heart is not right.

Please feel free to contact me about this project and in particular this post at angela@angelacoulombe.com

Tweet This Post