After reading about my Lyme blog on Twitter, Pam agreed to share her story of hope and her experience with Lyme. Here is Pam’s story.

I’ve probably had Lyme since the 1960’s.  I found out I had Lyme in a chance meeting in 2005 with a Russian-trained physician and medical researcher who connected many seemingly unrelated dots in my health history.

Along with brain fog, vertigo, lack of verbal fluency, sinusitis, and joint tenderness, my most serious Lyme issue has been the loss of my left hand and lower arm.  One cold winter day in 1983, I went to put my left hand into a glove and couldn’t move my thumb. By the next day my wrist had dropped and I lost the use of the whole hand. Numbness, tingling, and no strength. Just like that. No warning.

Like many others with Lyme, I trooped from specialist to specialist, but no one knew for sure what my problem was. Even a week in the hospital turned up nothing definitive.  I was sent home on high doses of Prednisone. When I learned how dangerous steroids are, I stopped taking it after five months. No one ever tested me for Lyme.  In the back of my mind, however, I thought the cause might be a virus. Guess I wasn’t too far off.

Enduring Hope

Lucky for me I trusted my instincts and never pursued further diagnosis and treatment until my chance meeting in 2005.  Yes, I might have gotten a Lyme diagnosis sooner.  But more likely I would have spent large amounts of time and money on multiple misdiagnoses with multiple treatments that didn’t work. Trusting in my innate intuition has always been my hope. It’s never once let me down, even if no one else agrees with me.

I’d love to be able to report that after 3 1/2 years of treatment, my Lyme is cured.  It isn’t, but I am a lot better.  The brain fog has lifted. I can find appropriate words. My hand is still weak but I have much greater range of motion.  The battle isn’t over, but I so appreciate that I know who the enemy is.

Inspiration

My inspiration through all the ups and downs of this frustrating disease has come from my husband (who probably got Lyme from me), my dedicated doctors, my friends and acquaintances with Lyme, and the greater Lyme community.  It’s very comforting to know that others understand and care about what I’m experiencing.

Also, once I stopped fighting the disease and the medical establishment that doesn’t want to admit it’s a big problem, the more at peace I’ve become in my own skin. My wishing things were different doesn’t change them.  It is what it is and I’m still learning to live as best I can knowing that.

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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

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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.

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