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.


Pearl said...

Um, why do you say "there is no cure" for Lyme disease? In my short experience since I first suspected Lyme (I've since been diagnosed, thanks to IGeneX testing), I've encountered quite a few people who have been cured. My highly regarded LLMD says the vast majority of his patients are cured, and he mostly gets the tough cases that other docs failed to diagnose. He says only about 10% of his patients seem resistant to treatment. He's big on antibiotics as it's the only thing that will have a chance of eradicating it from the body, but he's also big on supplements and nutrition to help heal the body.

I'm very sad when I see people saying, "There is no cure" as it ignores the many people who HAVE been cured, AFTER hefty doses of abx (usualy via IV). I will not hesitate for a moment to take IV abx long term if it will get me out of the hell of Lyme disease.

Ashley loves Leo said...

Woah Pearl! We are on the same page here, and share the same struggle. You've made several inaccurate assumptions about me and what our Lyme journey has been all about.

This blog post is not about Lyme and if there is a cure or not. This post, as with many of my posts, is about hope and good news. The good news that my children have normal lives, and that I have a good doctor. And great news that you have one too!

If you look further, you will see that you have actually posted on an autism blog that is all about hope and the unthinkable - autism recovery. Yes, autism, the epidemic that pediatricians say there is no cure for. So, I have been around a long time (11 years actually) in the chronic health problem world:)

To answer your question: The term “cure” is a matter of semantics. Technically, and I am sure your doc would agree, there is no cure for Chronic Lyme Disease. No magic pill anyone can take and be rid of it. Hopefully that day will come, and this disease will have a cocktail like AIDS. There’s exciting stuff coming down the pike that I’ve learned about at the many conferences I’ve attended.

The acute version is a different story! If it is caught right away and given the right antiobiotic protocol, one say say goodbye.

HOWEVER, people can “recover” from Chronic Lyme Disease and once again lead normal lives, and actually part of the point to my post. I would put my kids in this category. Isn’t that wonderful news?

Patients in recovery remain on a protocol and are perhaps susceptible to colds, viruses, and other maladies. These patients may have made some permanent lifestyle changes. The bugs are still there but may be a small/manageable population controlled by a healthier immune system. They may be dormant, but cause a few problems when the opportunity arises.

I too have met many recovered patients, and no two patients are alike. I know one that considers herself recovered because she can work again, which is wonderful news. But, she has chronic fatigue, pain now and then, and must be on a very strict sleep and food schedule. Who’s to say who is correct and who isn’t? We are all in the same boat and benefit from supporting each other. Fellow patients and parents (like me) are not the enemy.

Not enough time has gone by with this disease to demonstrate that patients once plagued by Chronic Lyme 10 or 20 years later that haven’t had relapses or chronic problems that are credited to Chronic Lyme.

It also heavily depends on the disease(s) makeup of the individual. Some are plagued with co-infections (like my daughter with 6 diseases total), while others have none or a less virulent strain, etc. Not to mention the individual's immune/GI strength.

I couldn’t agree with you more about your antibiotics philosophy and treatment of the whole body. From your response, it appears you’ve incorrectly assumed we don’t use antibiotics. On the contrary, antibiotics, and I mean TONS of antibiotics, are what saved my daughter. Both my kids have been on at least two at a time, along with immune/GI supplements, nutritionals, and special diet. I have many blog posts about Lyme disease and what we have used to combat it and crossroads in our journey to health.

I feel for you and get where you are coming from. It's tough as the beginning, but know that things get better, and I am sure with your passion you will conquer Lyme disease. Congratulations on finding a great doc and figuring out Lyme. Not an easy feat! Here's to health and happiness for the New Year.

Take care, Ashley

Jessica said...

Hi. I have read your blog entry here and am wondering if I could pick your brain a little. My mom "had" Lyme 11 years ago and "recovered" after the FDA protocol of antibiotics. I place those words in quotes, because my dad and I feel she still has Lyme and it had resurfaced in a big way. However, we can not find a doctor who agrees. She has been diagnosed with early-onset Alzheimer's. But in our opinion, there are too many discrepancies. Unfortunately, we live in IL where there are virtually no Lyme Literate doctors because of the controversies/insurance company policies/etc. I understand those difficulties are everywhere, but it seems we are in the worst of it.

Anyway, what I'd like to know is how you find out about the conferences you attend - my searches aren't very fruitful - and where Dr. Marra is located. I am looking into other doctors and seem to find them put east and it's a trek for us. But I think we could get my mom to do this if we were able to talk with a doctor that would take on her case.

My children adore her and I just can't let this disease take her away from them.

Thank you for any help you can offer.


Ashley loves Leo said...

Hi Jessica. Where do you live? I may be able to help you find a doc in your area.

You may want to contact the Lyme Disease Association http://www.lymediseaseassociation.org/index.php for help as well. The LDA and ILADs have good conferences several times a year. You can also purchase recent conference slides and video. I do this a lot when I can't attend.

Feel free to email me privately at busterfoofoo@gmail.com for more conversation:)