Tuesday, November 08, 2011

Dr. Marra, Our Lyme Doc

Dr. Marra has made it possible for both my kids to live normal lives. As I am typing this, my daughter is practicing her dance team choreography. She dances 7 hours a week, and is preparing for a competition. Just a couple years ago, she could not walk longer than one block without triggering a Lyme flare. For her, that meant sudden shin, sole, stomach, and head pain so bad, it stopped her in her tracks. She had to relearn how to ride a bike, run, and do typical gym activities.
Dr. Marra chose to take on her very complex case. Before Dr. Marra, my daughter was home for 2nd grade because she had 26 chronic pain areas, and we almost lost her to a flare-induced seizure when she was 7. It was New Years Eve, and we were in a hotel surrounded by noise makers and drunk people. I have been to hell, and it’s called Lyme, but we are back. The doc that mentored Dr. Marra for years saved her life, and we are forever grateful we have her in our lives to finish the job.
When my son began showing signs of Lyme disease, she put him on a protocol that, a year and a half later, has just one residual symptom of minor facial tics. Dr. Marra prevented the big decline that we didn’t know how to stop with our daughter.
What is it like to see Dr. Marra? First, she interviews me, the mom. It is an intensive interview, which I appreciate. Next, she interviews my child. After that, Dr. Marra performs a thorough Lyme exam, EVERY visit. I am not kidding! I have had docs that never even turn around to look at my daughter sitting on the exam table, and not even look up from note taking. That had left the burden of discovery on me, and I am not a doctor!
Every visit is different, and every visit I learn something new. I appreciate the frequent visits, as I know I am shortening our Lyme time by the personal monitoring we are getting from Dr. Marra. She is available in emergencies and even quick questions. I walk out being thankful I have scrounged up the money to pay for this expensive disease(s). I may be sweating as I write out that fat check, but I am thankful for the bag of gold (supplements/test resulfs) and knowledge I walk out with. I know I am one step closer to a full recovery.
I have never had more personal care from ANY doctor in my life. Amazingly, she KNOWS my kids! I don’t have to reiterate and do a life history each visit. She picks up where we left off, takes their cases, and tinkers sometimes in a minor way, or major way with their protocol. That is the nature of Lyme. These dynamic changes are the reason my kids are doing so well. She sees the big picture, and also the most minute detail, and factors that in to my bi-monthly master plan. Both my kids open up to her and tell her things that I cannot get out of them. They adore her, and find her office to be a very special sanctuary.
Better yet, I appreciate the fact I am not getting a boiler plate protocol. I have two sick kids, and their protocols continue to be extremely different (other than core nutritionals). They do have intensity and variety in common.
Dr. Marra is one of the brightest people I have ever met. Scary bright. She embraces her calling with enthusiasm and no B.S. I am sure there are plenty of other ways she could be using that science brain of hers. But, she has chosen one of the hardest specialties there are, a political/orphan disease with no cure. I mean hello, I would run as fast as I could and hide under a rock. She has chosen to help us, when western medicine has turned away from us.
I can see how some people can be turned off by her direct approach. She tells it like it is, and knows her stuff, which I prefer. I don’t care for the hand-holding/babysitting style, but hey that is me. I am busy dealing with 3 people with Chronic Lyme, I drive from 3 hours away, so I am in no mood for dancing around.
I know it’s not for everyone to be accountable for their wellness, and just wants a doc to take over and fix it. For those that get better, I have observed the following characteristic: It’s a team effort by everyone involved. Patient, doctor, family/community. After all, there is no cure for this disease.
And speaking of teaching, from what I have observed, she attends or speaks at all of the major seminars - Lyme, and other health related conferences.
She is extremely well connected because of her east coast roots. Given the type of disease this is, it is more important than ever to tap in to your doc community, just as it is for us parents to turn to other parents for support and advice.
I found Dr. Marra through word-of-mouth back in CT, ground zero for Chronic Lyme Disease. Two years ago, my family and I were fleeing the war zone for a safer life for my children. I knew that moving to the NW was possible - an east coast doc with a “pedigree” that no other doc could match.
My daughter had done very well with the cutting edge docs that are at the forefront of research and treatment guidelines back in the trenches. The top dogs. These guys trained Dr. Marra. She was mentored by them, and watched them work. I felt like I had won the lottery having access to the caliber of these east coast docs, but right here in the NW.

We look forward to walking the walk with Dr. Marra's guidance for as long as it takes.