From Susan Friedl – Research Coordinator at Gordon Medical
Welcome to the new Gordon Medical Associates (GMA) blog!
When we first began blogging over a year ago (2011), following a Santa Rosa presentation on chronic Lyme Disease by Dr. Burrascano, we had no idea how much interest there would be in what our doctors had to say. Our first blog, Putting Lyme Behind You, was started to answer questions from patients and friends who attended the lecture. Since that time, we have had readers from all over the world, and our doctors began to feel constrained by talking only about Lyme disease. After all, we treat all kinds of complex chronic illness, all of the types of patients that other doctors would prefer to ignore. Our practitioners want to engage with the patients, to find out what is important to you, and to make sure you understand your treatment, so that you can keep up with how and why you are doing what they suggest.
(If you want to see the posts from the old blog, you can find them at Putting Lyme Behind You. We are not updating it, as all new posts will go onto this blog. If you want to get a copy of the DVD from Dr. Burrascno’s talk, you can order it from GMA here.)
Our doctors don’t ignore people with Chronic Fatigue Immune Dysfunction (CFS/ME OR CFIDS), chronic Lyme Disease, other Tickborne Illness, Fibromyalgia, Autism, chronic digestive disorders, or any other illness, usual or unusual. They may not always have all the answers, no one really does. But they will keep working with the patient to find what is needed for the individual to improve their health, and their life. What does it mean to unravel an illness? Complex chronic illness is something that develops over time, with dysfunction adding to dysfunction, until it becomes difficult to know where to start in the healing process. For these patients, treatment is like trying to find the start of a string in a tangled ball of yarn. Once you find that start, you must patiently unwind, sometimes stopping to remove knots, or even to repair a break in the yarn. With treating patients, the right treatment has to be done at the right time. There is no standard protocol that can be followed in every case.
I came to work at Gordon Medical in 2006 to coordinate research, hoping to help find which treatments worked best, when to use them, and to weed out those which didn’t help. Sounds simple, yes? NOT simple! In trying to help as many people as possible, we find it hard to completely rule out treatments, as all treatments seem to help someone, sometime. The question is, when to use which treatment, as well as which treatment to use for which patient.
One of the first big projects I oversaw at GMA was an attempt to discover just that. When do you use which treatment, and with which patient? Dr. Gordon was holding a series of private symposiums with an international group of doctors on the cutting edge treating CFIDS, Fibromyalgia, Autism, and chronic Lyme. Each doctor or researcher had their own way of diagnosing and treating patients, and they all had successes and failures. Each doctor had a list of tests they used to tell which patient would do well on their treatment. These tests ranged from blood tests to a sophisticated ultrasound of the heart that observed heart rhythm changes in response to toxins and treatments.
How would you know which to start with? We decided we would do every test from every doctor on each of 30 patients, in an attempt to see who might need the treatments each doctor claimed success with. We hoped to find cohorts of patients, a few who would do well on Dr. Burrascano’s protocol, some who improved on Dr. Shoemaker’s protocol, and others who needed Dr. Cheney’s treatments. What we found instead is that all of our patients showed problems in every area, in almost every test, yet they didn’t respond to all of the treatments! We found lots of indicators of problems, but no clear sign of where to start.
So, back to the drawing board! Dr. Gordon and the other doctors in the symposium group continue to find new protocols, and new ideas, and they continue to try to discover when they will work, and with which patients. Though the original study didn’t give us the answers we wanted, the doctors involved have continued to share with each other, trying to come up with a cohesive understanding of what goes wrong, and how to help. We know they each have a piece of the answer, but we haven’t yet been able to put it all together.
Though connections developed in the symposiums, GMA was able to participate in the XMRV retrovirus study. This study brought such hope to the patient community, and then fell apart as a new type of laboratory contamination was found to be the cause of all the potential positive results. It was a hard lesson for us all as hopes shattered. But the good news is that research brought attention to these diseases in a way that hasn’t happened for a long time, maybe ever. There is more money being spent on research on CFS/ME than ever before, and there is still the possibility one of the tracks will pay off in a way that will benefit the patients.
We keep looking. We have been helping to enroll patients into the Stanford Lyme Study, which is intended to look at the immune response in Patients with Lyme disease. Hopefully this will bring out some thoughts on why certain people cannot get well even when treating for years, when others do fine on short stints of lower dose antibiotics. We are running several initial pilot studies in the GMA office now in the areas of Multiple Chemical Sensitivity (MCS) and in mercury toxicity. We are also just beginning to recruit patients into a new Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis study which will follow on leads developed during the XMRV studies. We are not often able to accept participants unless they are our patients, but if something comes up, we will let you know.
We hope to share some of our interests with you on this new blog. Feel free to let us know what you would like to know about, and ask questions. The practitioners will answer as they are able. We can’t prescribe treatment over the web, or diagnose you, but we can help you to understand how things work. I find that patients who understand their protocols and can actively participate in their treatment do the best. Over time this site will become a resource for all patients, even if you do not see our doctors.