She’s a Marshall Protocol board moderator who has been with the treatment from the early days and has helped hundreds of patients down the road to recovery. Meet Belinda Fenter.

How did you first become involved with Dr. Marshall and the Marshall Protocol (MP)?

I actually met Dr. Marshall on the internet. At the time, I was undergoing testing for what was eventually diagnosed as sarcoidosis. I got online and started looking for information and treatment options. Dr. Marshall was posting online in a few forums. He seemed like the most knowledgeable person and he supported his ideas with scientific documentation. I had worked in a medical setting for several years and was researching sarcoidosis in the medical library. As far as I could tell, Dr. Marshall seemed to have the most comprehensive understanding of the disease and his views just seemed more plausible than any of the others.

I searched until I found Dr. Marshall’s email. I contacted him and we began collaborating. It wasn’t long before Dr. Marshall decided to start a new and unique website and asked me to join his efforts there. Dr. Marshall produced his model of disease pathogenesis, explaining that only undetected, persistent bacteria could provoke the granulomatous response (the formation of clumps of cells in the lungs) that is observed for no other obvious reason in sarcoidosis. Our work drew on the body of previous research by others, such as Alan Cantwell and Lida Mattman, who reported finding occult cell wall deficient bacteria in people with chronic diseases such as sarcoidosis.

We did a great deal of research on exactly which chemicals are produced in patients with inflammatory disease in order to understand the disease process and the anomalous response of patients to certain drugs. Dr. Marshall’s disease model mapped out how a person develops sarcoidosis, and how the disease process could potentially be reversed, leaving the patient in a state of remission. The more we understood exactly what was taking place biochemically in the disease, the better our model became.

So our website was different from most that discuss disease. For the most part, other medical forums are places where free-for-all discussions take place. People chime in about anything that comes to mind. Some boards serve as arenas where chronically ill people seek support and discuss the difficulties of coping with disease. We never wanted our website to follow either of these models. The aim was to create a study site that was focused on helping people understand the basics of disease and how to get better. We set a high bar for discussion topics – questions have to be directly related to disease or the treatment. Some people have a hard time adjusting to the fact that certain discussion topics are not appropriate. But we are intent on maintaining a level of accuracy and focusing on the science.

What is significant is that our study website has used the internet in a totally new way – to connect physicians and patients to a phase II clinical study of a drug intervention.

How did things progress after that point?

It was a stroke of luck that the first disease we dealt with was sarcoidosis. It is already widely accepted that vitamin D negatively affects patients with the disease, although few professionals other than Dr. Marshall were interested in that connection at the time. We had to dig through a lot of dusty medical journals to find detailed documentation about the devastating effects of vitamin D in sarcoidosis, but it was there, several times over. And Dr. Marshall had already discovered that the angiotensin receptor blocker Benicar affected the Vitamin D Receptor.

The other factor that worked to our advantage is the fact that patients on the Marshall Protocol show an unusual rise in symptoms after each dose of carefully selected antibiotics, a result of the immune system dealing with the toxins and cytokines released by dying bacteria. Our disease model predicted that patients would manage this reaction best if they were on higher doses of the angiotensin receptor blocker Benicar (a medication that is normally used at low doses to treat hypertension), in order to activate the immune system. This proved to be true. When patients took Benicar, they could better manage the flare of symptoms that resulted after each dose of antibiotics. This made it very clear that Benicar was working as expected and played an integral role in recovery. Furthermore, the flare in symptoms, called immunopathology, showed us that the antibiotics were indeed killing bacteria. After that, things started to snowball. We observed that we truly were inducing recovery.

At that point, Dr. Marshall, myself and other patients who had started the treatment were very excited. The treatment was affecting the disease process exactly as Dr. Marshall expected and symptoms were fading. At that point, we began thinking, “This is truly possible! Recovery IS on the horizon!” Then the big question became how long? How long would it take to reach a state of remission? We had to wait a few years to see remission.

We soon realized, though, that quite a few sarcoidosis patients on the Marshall Protocol had also been given other diagnoses such as fibromyalgia, Chronic Fatigue Syndrome, Lyme and other chronic conditions. The symptoms attributed to these diagnoses started to improve as well. Remember that researchers who have studied occult bacteria found these pathogens in a variety of chronic diseases, not just sarcoidosis. So when people with only CFS, fibromyalgia, Lyme etc started to approach us and say, “Hey! Could this possibly work for us?” We said, “Well, we have patients with your same idiopathic symptoms who are recovering.” After that point, people with variety of chronic diseases began to start the MP.

In the early days of the MP did you think the treatment was going to work for such a wide array of diseases?

No, in the early days I actually did not realize what a wide spectrum of diseases the MP would be able to treat. However I think the similarity was topmost in Dr. Marshall’s mind. In the early days, Dr. Marshall discussed with me how, when researching different diseases during the 1980’s, he’d noted similarities between the symptoms of patients with diabetes and sarcoidosis, and even patients with infertility. That was why he seized on the Road Back’s Protocol’s (another treatment that uses antibiotics) pulsed, low-dose minocycline dosing for arthritis as our initial intervention.

What do you do these days?

Well, I’m enjoying life! When I was ill, I didn’t have much of a social life, which often happens with chronic disease. But I feel like a very different person now that I’m well. I had to get to know my family and friends again as a well person. I met my daughter-in-law when I was sick, so I had to get to know her a second time, as someone with energy. When I started to recover she said, “I’ve never seen you like this! You’re so excited and full of vitality!” I almost had to find a new footing for myself and give people time to get to know the new me. Now I can actually enjoy good times with my family. Also, I’m able to look back on the years and understand what happened to me as I became ill. All the doctors I’ve worked with during my time on the MP have expressed surprise and amazement at my recovery. I believe that most people diligently following the MP are going to reach this point.

I do volunteer work for the Autoimmunity Research Foundation. I am usually assigned special research projects. For example, I recently did quite a bit of research into the effects of ARB medications on kidney function, then updated an article on the website that addresses that issue. I work with the team to help to ensure that our information is as up-to-date as possible. We are intent on providing documentation for all the material we have on the site, so I try to include links to as many scientific papers as possible.

What’s it like to be an MP moderator?

The work by moderators on the MP website is critical to the treatment’s success. As a group we’re all pretty focused and intense. I’m always amazed at how the nurses on the board can empathize and tune in to a certain patient’s needs, even when the conversation is taking place over the internet. Meg Mangin and Aussie Barb have been with us from the beginning and deserve special recognition. The moderators who have been with the treatment for a longer period of time help train each new person who becomes a moderator. I feel, and I think this is true for most of the moderators, that the job is somehow healing in itself. Having been able to find the answer to my disease and then pass along the treatment to other people is a gift. It’s one of the best feelings in the world. We used to joke that when everyone on the treatment gets well we can throw a global party, but it’s looking as if that would be a huge party. You know, that’s one thing many people don’t realize – the fact that the MP already has a global reach and that physicians and patients in many different countries are using the treatment and seeing positive results.

What advice would you give to new patients?

First, I would say that you should read the website as thoroughly as possible. Ask for help from the moderators if you need it. Be honest in assessing your symptoms. Following through with the MP takes determination. There are plenty of people who show that if the treatment is done in the correct manner, healing is possible. I think that sometimes people are scared to undertake something difficult, without realizing that coping with ongoing illness will be more difficult than doing the MP. Also, understand that the moderators have a certain level of knowledge about disease and that following their advice can prevent problems from arising. Some people complain that we repeat certain answers to questions. But when there is only one correct answer, there is only one statement to make.

What are some of the biggest challenges of moderating an online protocol?

One of the biggest challenges we face is keeping up with growth as more and more people start the MP and become members of the study site. We are constantly brainstorming ways to use our time as efficiently as possible. Many people don’t realize how much work goes on behind the scenes. At the same time we are answering patient’s questions we are also thinking, “What should we do next?” We are working with agencies such as the FDA and NIH to help them better understand the issues at hand.

What do you feel is one of the biggest misconceptions people have about the MP?

Many people who start the MP have been ill for a very long period of time. Over the years, they may have started taking a variety of supplements and vitamins. Whether or not these are actually doing something, they comfort the person by making them feel that they are taking action to combat their disease. These people have been doctoring themselves, although I understand the need to be proactive. Sometimes, when people start the MP, it takes a while for them to accept the idea that they need to drop all this extra baggage. Once on the MP, you simply do not have to take supplements anymore unless there is a measured deficiency. Taking them can affect the body’s natural state of homeostasis. It’s as if a person who starts the MP has been shipwrecked by illness and is clinging to a plank of wood (the supplements) that barely allows them to keep their head above water. When the rescue boat comes along, they have to ditch the plank of wood and grab the hand reaching out from the boat. It can be hard to abandon the supplements that have kept them functioning during long, difficult times.

What lies ahead?

It seems that we are dealing with more than just bacterial pea soup. Healthy people are carrying these bacteria as well. That begs the questions, “What is the difference between healthy people and sick people?” “How do you define a healthy person?” It seems that L-form bacteria may be part of the aging process and that there are more intense manifestations of or reactions to these pathogens in people who are sick. Many people go to the doctor complaining of aches, pains, or memory relapse and are told these symptoms are a natural part of the aging process. But perhaps the MP can address these issues. I mean, is aging just the process of L-form bacteria slowly wearing down the body? It’s certainly possible. In the 1980’s, researcher Emil Wirostko showed that stem cells can be infected by L-form bacteria. Does aging result when infected stem cells can no longer repair tissues?

We are also seeing significant manifestations of Th1 disease in people with autism and other mental disorders. There is much more territory to explore in that regard. I think that as a research team we’ve come a long way, but in reality, we’re still at the very beginning of understanding bacteria and chronic disease. The answers to many of our questions lie in observing people on the study site as they use the MP to treat an ever-widening number of medical conditions. It will also take open-minded and forward- thinking people to accept the changes in thinking. Our new understanding of chronic disease requires people to make a shift in thinking that turns some of conventional medicine on its head. But, if you think about it, this is the way most major advancements in science have occurred. More than 150 years ago, doctors had a hard time accepting the idea that they should wash their hands after an autopsy and before examining a patient.