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Welcome to the New Gordon Medical Associates Blog!


From Susan Friedl – Research Coordinator at Gordon Medical

Welcome to the new Gordon Medical Associates (GMA) blog!

Gordon Medical Practioners

Mara Williams ND, Eric Gordon MD, Neil Nathan MD, Annemieke Austin MD
Lisa Portrero-Perry ND, Wayne Anderson ND, Sunjya Schweig MD, Elizabeth Large ND

When we first began blogging over a year ago, 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.

Echocardiogram to test for toxins and the best tretaments

Using a specially trained technician, an echocardiogram gives clear signs of substances that cause stress to the heart, and which cause improvement in stress levels.

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.  You can read more about our current research here. If you are a Gordon Medical patient, and would like to find out whether you are eligible to participate in any of our studies, please contact me.  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.

To read more about our current research projects, be sure to check out our RESEARCH page.

Comments

  1. >>Complex chronic illness is something that develops over time, with dysfunction adding to dysfunction, until it becomes difficult to know where to start…The question is, when to use which treatment, as well as which treatment to use for which patient.

    Yes! I think this is the huge elephant in the room during too many doctors’ visits. Yes, there may be some wonderful protocols that have emerged in the treatment of CFS (or FM, or Lyme, or) but since these are multi-systemic diseases that affect each of us differently, especially when we’ve been sick for a decade or more, patients need doctors who are, well, patient in teasing apart that tangled knot and finding what helps and what doesn’t, doctors who have learned to toss aside the cookie-cutter disease treatment templates and actually do what you do: treat the patient sitting across from you now.

    I do have a quick question about XMRV. As a patient who tested positive for it, does the lab contamination issues that arose over the past year or so mean there is no such thing as the XMRV, and that I DON’T have it?

    • Thanks for this question!

      The final word on XMRV is not yet in, but it looks as though it is unlikely to be an infectious process. For those who tested positive by PCR, in other words, those whose blood seemed to carry the XMRV or HGRV DNA, that seems to be pretty clearly caused by contamination of the labs the blood was tested in. Even the Whittemore Peterson Lab, which Dr. Mikovits thought was completely clean, was later found that another lab down the hall was using mice for test purposes. It would be very easy to have the contamination move that far.

      For those who tested positive by antibody, those whose body seemed to be reacting to a retrovirus, there may be more to learn. It is possible the blood showed an antibody reaction to the mouse DNA in the lab, after having been removed from your body. In that case, the antibody reaction would not mean anything significant.

      It is also possible that the antibody is to some other, as yet unknown pathogen. That is the purpose of several current CFS studies which are pathogen based. There are also other possible causes of the antibody response while still in the body, but not directly caused by a pathogen, and again, studies still being conducted may have those answers. The new NIH study, New Strategies to Decipher the Pathophysiology of Chronic Fatigue Syndrome, being conducted by Vince Lombardi, is one that we hope will give us some answers. Check our research pages to learn more about it.

      Not a very complete answer, but the best we have right now. I don’t think there is any need to be concerned about XMRV itself causing you harm. Obviously, if you have CFS, something is wrong, but it is unlikely to be this particular retrovirus.

      • In answer to a question I received via email:

        Have you gotten my labs results on the second test I did for that retro virus, XMRV? It will be 2 years in DEC that I did that test to the best of my recollection.

        Answer:
        Dr. Mikovits was doing all of the testing for us at the Whittemore Peterson Institute. When she lost her position at the lab, she had to leave behind all of the samples and all of her records on what she had done. With the issues about contamination, WPI decided not to follow through with any of that testing. So we will not receive any results on that group that were not in when Dr. Mikovits left.

        For any who participate in studies, while two years seems a long time to get lab results, it is quite common in study testing. Many studies do not provide participants the results at all. So the length of time involved in the WPI study was not unusual, it is just unfortunate that it did not have any findings that would help.

  2. Patricia Hoex says:

    I understand that doctors focus on understanding what is causing the symptoms, however from a patients perspective, far more then needing to understand the cause or finding a cure, I am desperate for pain relief. Is there any studies focused on management instead of treatment?

    • Hi Patricia,

      I really understand your desire for pain relief! We don’t have any current studies on that issue, but we do have treatments that are effective. Not everything works for every patient, so you would need to speak with your practitioner and work out a protocol for you. Some of the options are Frequency Specific Microcurrent, Scenar, Prolozone, Prolotherapy, Trigger Point Therapy, Cranial Sacral Therapy, Bee Venom injections, and there are many more. Dr Nathan has a talk online about chronic pain treatment at http://mendocoasttv.org/MCDHWellnessNeilNathanChronicPain-1-21-10.html

      Treating chronic pain almost always requires multiple approaches. You do want to be sure to treat any underlying issue, as well as treat the pain directly. I personally love seeing Julie Galvan in our office for a combination treatment of Frequency Specific Microcurrent and Cranial Sacral therapy. Heaven!

      Hopefully one of the practitioners will be along soon to address this further, and give you more ideas.

    • There is a huge difference between “managing” chronic pain and treating it. Beginning in the 1970’s we saw the evolution of what are called “Pain clinics” which began as 2-4 week inpatient stays in which patients were taught stretching, biofeedback, stress management, coping mechanisms, relaxation strategies and withdrawn from medications. There are hundreds of published papers showing the effectiveness of these treatments in helping patients with chronic pain “manage” their pain better. “Management” means decreased pain levels and improved functioning at work and home. While this is very helpful for many patients, it still misses the possibility of curing the pain by clearly identifying its cause and removing it. While this is not always possible, it is more possible than most patients realize. In the compartmentalized care provided in most of today’s medical practices (not ours) each practitioner deals only with one part of the problem. This means that an individual with pain may see an orthopedist, a rheumatologist, a physiatrist, neurologist, neurosurgeon, orthopedist, anesthesiologist and other providers. Each of these deals with a limited body region or problem. I have seen patients who have separate specialists for their pains in the neck, thoracic and low back area, none of whom co-ordinate this care! I know that many patients feel like they have seen so many providers that they are ready to just give up and “live with the pain,” but often there is more that can be done once we delve into the problem with fresh eyes. It may take time, and quite a bit of trial-and-error therapeutic trust, but I believe that most patients in pain can be helped.

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  4. Glenn Kennedy says:

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