Lyme Savvy | A one-of-a-kind collaboration between patient and doctor

Navigation Menu

Giving Up My Vanity

Posted on Jul 27, 2010 in Blog |

When we moved into this house 19 years ago, I was ecstatic to have an area between my bedroom and bath to put on make up.  I had my very own vanity area, with a countertop, a chair, and a niche.  I loved it.  I put up my favorite artwork on the two walls.  I used it every day. Then I got Lyme. This past Christmas, I asked Jeff to purchase a stackable washer and dryer for the upstairs. “Where are we going to put it?” he queried. “We can take out my vanity and put it right next to the bathroom,” I replied.  Jeff gave me a puzzled, almost incredulous look. “You mean, you are willing to give up your vanity area just to be able to do the laundry upstairs?” he asked. “Yep,” I replied. A few weeks later, I had a functioning stackable washer and dryer area that I try to use on a daily basis. When I got the Lyme diagnosis, my physician had a long talk with me about needing to reprioritize my life, learning to do without, learning to have some things to do that were non-negotiable.  I thought I knew what he meant.  Giving up my vanity for the washer and dryer wasn’t so bad. Though raised primarily in northern Virginia, I was raised in a southern tradition by southern parents.  Girls never went out without their hair nicely done and make up properly applied.  I wasn’t the best Southern girl, but going out in public without my makeup was rare, like 3 times a year. In June, I noticed it was taking me long and longer to get ready for work in the morning.  In my teen-age years, it would take an hour to primp and prepare, plus those 27 minute showers that Dad timed on us. Becoming a mother shrunk my prep time to under 20 minutes to shower, do the make up, dry the hair.  It made me wonder how I spent the other 40 minutes when I was younger.  I’m still not sure. In June, just getting out of bed took a good 20 minutes to loosen my...

Read More

Down the Rabbit Hole

Posted on Jul 24, 2010 in Blog |

It was a year ago this month that I began the final leg of my journey to a Lyme diagnosis. It originated last July with a ‘Lupus’ diagnosis. As I walked out to my car, I called my sister, the nurse, to tell her the verdict and to find out more about this disease I had only vaguely heard of. A few days later, my uncle wrote me a relatively short email. The jist of it was, ‘You don’t have Lupus. You have Lyme. Go to a Lyme Literate Medical Doctor and get a Western Blot blood test from IGenex lab in San Diego, CA.’ That email and further conversations with my uncle are reminiscent of the scene from ‘The Matrix’ when Morpheus tells Neo that he has a choice. He can learn what the world really is, the reality of life. Or he can go back to being blissfully ignorant. He offers Neo two pills. ‘This is your last chance. After this, there is no turning back. You take the blue pill – the story ends, you wake up in your bed and believe whatever you want to believe.’ Pause. ‘You take the red pill – you stay in Wonderland and I show you how deep the rabbit-hole goes.’ Since last July, I have been going farther and farther down the rabbit-hole. In this Lymeland, I have learned the difficulties in finding a qualified physician to correctly diagnose and treat this insidious, invasive bacteria. I got the Western Blot blood test from IGenex lab and still had two physicians tell me I didn’t have Lyme. The first one said I had bursitis in my hip. He didn’t have an explanation for any of my back pain or other mysterious symptoms. The second physician told me unequivocally I did not have Lyme. He couldn’t tell me what I did have and he was refusing to test me any further to give me a diagnosis. ‘You mean you’re going to stop looking for what’s causing all these symptoms? All my pain?’ ‘Yes. We’ll just treat you symptomatically for a few years and then maybe the testing will improve and we...

Read More

Relief and Renewed Hope

Posted on Jul 13, 2010 in Blog |

Relief and Renewed Hope Last week, I started a new medication for my Bartonella (co-infection of Lyme disease). At 2:45 the next morning, I woke up in extreme pain, feeling deep bone pain in my legs and right hip. By 5:30 am, the pain had exhausted me enough that I decided I wasn’t strong enough to handle Lyme treatment. I couldn’t handle it. I was giving up on trying to cure this damn disease. I understood why some chronic Lyme patients choose suicide. The next morning, I asked my 17 year-old son, Stephen, ‘How did you get through this treatment?’ ‘It gets better, Mom, I promise,’ he replied. ‘I don’t know how you did it,’ I responded. I really didn’t. I felt like a failure. I couldn’t handle the pain of one pill; I was asking a 17 year old how to get through the pain. I got through childbirth without drugs. I shattered my foot and spent 7 weeks in a cast. But the pain from this one pill was too much. Today, I saw my Lyme doctor. In a matter of hours, my entire perspective changed. I feel a great sense of relief and renewed hope. That’s just one of the things I love about Dr. M. In an hour’s time, he listens to my complaints, figures out what is going on and why, tweaks my treatment plan (I’m sure he has a more sophisticated word for it than tweaks), explains everything clearly and simply, and then gives me the encouragement and hope that I need to get through another four weeks before my next appointment with him. I wish I could come up with different words for M than the ones I always use: brilliant, compassionate, funny, artistic, methodical, amazing. After examining me and talking with me, he explained, ‘I’ve never had a patient respond to the medication this quickly.’ If his head was transparent, I would have seen the wheels turning. ‘Describe your pain,’ he requested. I did. In my head, I thought, ‘Maybe I had a psychosomatic response to the meds . . .’ We went over the rest of my treatment protocol, and...

Read More
css.php