In spring 2005, Chronic Fatigue Syndrome and Fibromyalgia patient Amy Proal was just 23, and laid low with worsening symptoms including severe Candida. At that point her physician – a leading U.S. specialist in treatment of FM and CFS – e-mailed her a single sentence: “Try the Marshall Protocol.”
“Attached was a list of instructions with the title ‘Phase 1 Guidelines,’” Amy recalls. “I read them slowly, realizing with growing excitement that a treatment called the Marshall Protocol (MP) had been developed with the potential to actually CURE my illness, not just mask my symptoms.” After three months on the experimental protocol, which must be managed by a physician, she wrote an optimistic account of her early progress. That story, with Amy’s summary of the theory underlying ‘the MP,’ was published in the July 25, 2005 issue of this newsletter at http://www.immunesupport.com/library/showarticle.cfm/id/6569
Now, after 20 months on the protocol, Amy Proal has provided a second chapter – an encouraging update. The journey she describes has been a painful one, with the sorts of distressing side-effects that have discouraged many others and fueled controversy regarding the protocol. (See the disclaimer at the end of the article.) Importantly, patients with diseases mentioned in explanations of the MP theory should be aware that, depending on their physician's preliminary testing, it would not apply to everyone. But by Amy Proal's account the result so far has seemed worthwhile for her – and no doubt many readers will wait hopefully for her “chapter three.”
This past Christmas I was filled to the brim with holiday spirit. I spent two weeks with my boyfriend and his family. I helped cook delicious meals. I went for walks on the beach. I rode for hours in the car. I went out to lunch with relatives. My head felt clear, my body strong. The aches and pains caused by my CFS were minimal. One night I went out to dinner with friends. We told old high school stories and laughed a great deal. Later my friend told me I looked “radiant.” She said she simply could not stop staring at me because I looked so healthy and happy.
Yet for the previous three years I had felt too ill to get out of bed on Christmas. Why did I feel so dramatically different this year? I have spent 20 months on a treatment called the Marshall Protocol (MP). During the past year, MP therapy has drastically altered my ability to function and has eliminated many of my CFS symptoms. It may take another year or two until I fully conquer my disease. But, based on my improvement thus far, there is not a sliver of doubt in my mind that in the coming years the MP will completely cure my CFS.
In July 2005 I wrote a piece in this newsletter about the MP after I had been on the treatment for three months. I’ll review the major concepts of the MP again here, adding some of the lessons learned about it in the past year. But for more detail on the treatment details you may want to refer to my earlier story. Answers to “frequently asked questions” about the MP can be found at www.marshallprotocol.com/forum32/ [and interested physicians may participate in a private forum for medical professionals at http://www.marshallprotocol.com/index.php ]
The Underlying Scientific Concept:
Cell Wall Deficient Bacteria Cause Th1 Illnesses
The Marshall Protocol, created by Professor Trevor Marshall, PhD, is based on the idea that CFS and many other chronic illnesses – termed ‘Th1 illnesses,’ including Fibromyalgia, Lyme disease, and rheumatoid arthritis – are caused when the body accumulates large amounts of bacteria that have mutated and lost their cell walls.
First discovered in 1934, these cell wall deficient (CWD) bacteria are now known to exist in at least 53 different species. More information and pictures of these bacteria can be found at http://www.marshallprotocol.com/forum2/2810.html . Because these forms of bacteria lack cell walls, antibiotics can weaken them but are unable to kill them directly.
In the past year, Professor Marshall developed advanced molecular modeling techniques to show that the vitamin D receptor (VDR) is a critical component of the immune system. In simple terms, it serves as a “switch” that turns the immune system on or off. Some molecules activate the VDR, while others cause it to shut down. Vitamin D binds and INACTIVATES the VDR. Professor Marshall submits that CWD bacteria strongly interfere with vitamin D metabolism - throwing vitamin D levels out of range. This theory of disregulation and related "preliminary" D-metabolites tests are discussed at the MP site. [See also the addendum to this article - where Amy provides more detail on preliminary testing according to MP theory.]
Thus, patients on the MP strictly avoid all forms of vitamin D "until the body can again regulate it normally." In addition, MP patients further strengthen their immune systems by taking a medicine called Benicar® that binds and ACTIVATES the VDR.
Several Years of Carefully
Selected & Managed Antibiotics
Once the VDR is turned on, the immune system is able to identify colonies of cell wall deficient bacteria present in the tissues. MP patients proceed to take a low dose of carefully selected antibiotics, gradually increasing doses and combinations of antibiotics over the course of several years. These antibiotics come in contact with CWD bacteria and weaken them by turning off the proteins that allow them to grow, replicate, and obtain nutrients.
Because patients are avoiding vitamin D and taking Benicar®, their own immune systems gradually become strong enough to recognize the weakened pathogens and kill them.
Patients Must Endure Immunopathology
(Herxheimer Reaction to Load of Dead Bacteria)
The immune system’s response to bacterial death is currently referred to as immunopathology (formerly called the Herxheimer Reaction). Immunopathology is an increase in the Th1 disease symptoms a person presently has, or a return of previously experienced Th1 disease symptoms, that is caused when inflamed proteins (called cytokines) and toxins are released by dying cell wall deficient bacteria.
This means patients on the MP feel worse after each dose of antibiotics.
As mentioned, CWD bacteria throw vitamin D levels out of range. This often causes patients on the MP to become sensitive to light. Many people also find that exposure to light flares their symptoms. Thus, many MP patients wear special sunglasses and avoid sunlight in order to prevent these reactions from taking place.
Ability to Tolerate Light Increases
As CWDs are Purged
However, as the immune system kills more and more bacteria, vitamin D levels start to fall back into range. This means that, as patients begin to heal, they find they can tolerate exposure to light without feeling worse.
All MP patients proceed with the MP at their own pace. I was young. I didn’t have to work. I decided to advance as quickly as possible with the treatment. I increased my antibiotics at a rapid rate that allowed me to kill a large amount of CWD bacteria on a daily basis. I knew this would generate a very strong immunopathological response, so I was prepared to suffer from a much greater rise in symptoms than people who choose to increment their antibiotics at a slower rate.
I moved so quickly that after several months I began to take the three strongest antibiotics used by the MP all at the same time. Over the next year I raised the level of each of these antibiotics to the highest possible dose.
During this time, I moved from Chicago to Washington, DC, and my Mom came to live with me for several months. She did my shopping and helped me cook. I spent the vast majority of my time resting. All of my past CFS symptoms reared their ugly heads. Although I felt very run-down at times, I was never alarmed or surprised by my symptoms. All of them were familiar - the exact same ailments I had learned to live with for the previous two years.
From Random, Unpredictable Pain
to Predictable, Purposeful Reactions
It was easy for me to recognize that flares of my symptoms were a direct result of immunopathology. Before the MP, my pain was random and unpredictable. However, once on the MP, I started to react to each dose of antibiotics in an extremely predictable manner. There was a direct correlation between the time of day when I took my medication and the moment when I started to feel a rise in symptoms. Over time I found that I could adjust the timing between doses of antibiotics in order to control the severity of my immunopathology. If I lowered my dose of antibiotics, my symptoms decreased. When I raised my dose, my pain became more severe.
As I progressed on the MP, it became easier and easier for my body to generate a powerful immunopathological response. I was thrilled. My immune system was growing stronger. At last my body wanted to fight! I did not dwell on my painful symptoms. Instead, I focused on the fact that for the first time in years, my body felt as if it had the power to make me well again.
I forged ahead. I thought of myself as an athlete training for the Olympics. Just like an athlete, I knew I had to suffer a certain amount of pain in order to achieve a goal - in my case, renewed health. Every time I swallowed a new dose of antibiotics, I pictured myself as an Olympian who lifts weights every single day despite the aches and pains in her muscles. No matter how bad I felt physically, I remained positive mentally. Before the MP, my symptoms suggested that my body was slowly degenerating. However, once on the MP, I knew that every single symptom brought me a tiny bit closer to the day my body will be free of infection. I could spend hours just resting on the couch and feel like I was getting somewhere.
The ‘Rocky’ Mentality
My Mom left and my sister came to live with me. That entire summer my energy was low and my symptoms were painful. I did not venture far from my apartment. Exposure to light still flared my symptoms. On hot summer nights we sat outside on our front stoop and talked. Sometimes I felt exhausted just from walking up the stairs that led to the front door.
Whenever I had thoughts about a symptom, questions about how to manage my antibiotics, or reflections on my progress, I would log onto the Marshall Protocol website (www.marshallprotocol.com). The moderators on the site addressed every single one of my concerns with compassion and insight. I also got a tremendous amount of feedback and support from other people on the treatment. It felt good to connect with others who were in the ‘same boat.’
I was able to communicate online with Dr. Marshall at www.marshallprotocol.com/forum39/. We discussed many topics, including his “Visiting Professor” lecture to the FDA and the speeches he gave at medical conferences in Hungary and Australia. It was fascinating to learn more about the reactions taking place in my own body.
In August 2006 my sister had to leave. I moved back to Chicago. I was on my own. I was surprised to find that this situation did not frighten me. I realized that my body felt stronger. I needed to get a driver’s license. I hadn’t driven in six years. I waited for hours in the crowded and noisy halls of the DMV and was astonished to find that I still had energy to burn when it was my turn to take the driving test. I passed with flying colors. In my hand was a freshly printed driver’s license. It was a key to the outside world.
Getting my license was one of the first of many experiences that left me in awe at my ability to function during stressful and intense activities – activities that I NEVER could have survived without a year of MP therapy under my belt. During the two years prior to the MP, I had been unable to even ride in a moving vehicle. Vibrations from the motor and the lurching of the vehicle would cause a grinding feeling inside my head. The driver would pull over to the side of the road so I could vomit.
Imagine my surprise when I realized that after a year on the MP I could not only ride in a car without any adverse reactions…but could actually drive the car myself! The day after I got my license, I drove down a street near my house. It was the height of autumn, and the road was lined with trees whose auburn leaves fluttered in the breeze. I rolled down my window. I started to laugh. My head felt clear. I felt resilient. For the first time in years excitement and anticipation rolled over me in waves. As I watched the scenery flash by, I realized how dramatically different I felt from the day I had started the MP.
Encouraged by my ability to drive, I began to push myself in other areas as well. I remember going to the grocery store one afternoon. I picked heavy cans off the shelf, pushed a loaded cart, carried my groceries to the car, carted seven heavy bags into the house, arranged the food in the pantry and fridge…and then by force of habit headed straight for the couch! I waited for the burning in my muscles to intensify, the pounding in my lungs to escalate. But nothing happened. I was out of breath but I felt fine. Slowly I got up and walked back upstairs. Where was the feeling of severe post-exertional malaise that only a year ago would overtake me after the smallest bout of activity?
Before starting the MP, I lived in a constant state of fear. Something as simple as walking an extra block could make me feel as if my body had suddenly ‘cracked.’ I would collapse and end up in bed…sometimes for weeks. Now I could push myself physically, rest for a few minutes, and get up! My body was able to recover from the stress of moderate physical activity. What a difference!
Three years ago, I would wake up with an extremely limited amount of energy and constantly worry about how to “spend’ it. I had barely enough energy for basic activities. However, after about a year on the MP, I had more energy. I began to walk up and down the stairs in my house on purpose. I went shopping when I didn’t need to buy anything, just to walk around. I called up old friends. I no longer had to cut conversations short due to extreme head pain and exhaustion. I started to talk and talk and talk - expressing all the feelings, ideas, and emotions that had been bottled up inside me for years.
Suddenly, I wanted to be with other people as much as possible. Before the MP I would often turn down visits from friends. I wanted to be alone. Most of the time I couldn’t wait for company to leave so I could stop having to make pleasant conversation and instead burrow up under my covers. Now I waited with anticipation for people to come over. We went out to lunch, we went shopping…I started to feel my age again. I found that often I was able to be spontaneous - a personality trait I thought I had lost forever. I no longer had to plan events days in advance so that I could rest adequately and medicate myself in preparation for activity.
Back to Part-Time Work
In September 2006 I got an offer to do part-time online work. I said yes. I work from home and update websites and databases. For the first time in years I felt stable enough to make a serious commitment that required me to function on a daily basis. At first the pain in my head made working difficult. However, spending time on the computer got progressively easier. Now I can work at a fast pace. It is incredibly liberating to make my own money. I savor the feelings of satisfaction and accomplishment that come with receiving a paycheck.
The area where I felt the strongest immunopathological symptoms was - and still is - my head. However, my head is also the area where I have noticed the most drastic improvements. Before starting the MP, I did not realize how foggy my thoughts had become. But as time passed, I was surprised to feel my thinking become sharp and crisp. I could memorize and remember details more accurately. It seemed as if someone had taken the inside of my brain and scrubbed it clean. I felt calm. The sensation that my mind was constantly racing began to fade. Making decisions became easier. On several occasions I felt a sense of peace that had eluded me for years.
As time progressed, my immunopathology started to taper down. At the start of the MP, I felt like I had a raging infection. My symptoms seemed to penetrate every organ. My throat ached, my nose ran, my eyes watered. Today this “flu-like” feeling is completely gone. I still have pain in my lungs and throat but I haven’t blown my nose in months and my sinuses feel as if they have been aired out.
Even my dreams started to reflect the changes taking place in my body. When I started the MP, the ‘me’ that emerged in my dreams was weary and weak. The people in my dreams ignored my cries for help. I was always left behind. Gradually my dreams started to change. I was healthy. I had energy. Even at night my body sensed that I had a new core of inner strength that had been missing for years. My sleep started to improve. Before the MP I took six sleep medications. Now I take a low dose of only three drugs.
During my first month on the MP, I was so sensitive to light that a single 40-watt bulb seemed very bright. This suggested that my bacterial load was extremely high. I was unable to remove my sunglasses for even short periods of time without feeling a huge increase in symptoms. However, as my immune system wore away at my bacterial load, my sensitivity to light started to decrease. Although my house was lit with the same amount of light as the day I started the MP, the rooms began to seem very dark. I had trouble cooking and reading. I stopped wearing my sunglasses with dark lenses and switched to a pair with lighter lenses. I decided that soon I would experiment with taking off my sunglasses completely for a long period of time.
Daring to Make Future Plans
My state of mind began to change as well. After a few months in Chicago, I felt ready to let a special person play a greater role in my life. During the previous year, I had met a guy with whom I felt a strong connection. I was frustrated, because at that point in time, I considered myself too mentally and physically ill to be his girlfriend. I pushed him away. I did not allow myself to think about him or a future where we might be together. But as my body killed more and more of the bacteria responsible my illness, I started to feel like myself again – a “me” that had been buried for years under a pile of extreme pain which masked my ability to act on my feelings. I was ready for a relationship. I had energy to connect with another person. Suddenly I had the freedom to love without being held back by my body.
My boyfriend invited me to meet his family at Thanksgiving, 2006. He drove for two hours until we reached his family home. I didn’t need to rest. I decided it was a good opportunity to experiment with not wearing my sunglasses. I spent hours talking to his family. I didn’t find myself thinking about pain. I didn’t start to hope everyone would leave so I could rest. I was able to enjoy myself! Over the next three days I kept my glasses off and felt no rise in symptoms from extra light exposure. I made my famous guacamole. I played with the family dog. I slept well. I rested for only short periods of time. When I returned home I was sure I would be exhausted. I felt fine.
Back in Chicago, I put up Christmas decorations. I went to a holiday party. I thought of all the people I was thankful for in my life and had the energy to buy them gifts. I went to the mall four days in a row - walking quite a bit each time. I was amazed at my ability to rebound from these excursions and continue to be active on consecutive days. I needed clothing that wasn’t pajamas! I bought new boots and jeans. I was excited to get dressed up. I found myself singing in the shower. The words in every Christmas carol seemed glorious. I decided to buy a digital camera. I wanted to remember the coming days for years to come.
Then…Christmas 2006 (as described in the first paragraph). Now it’s 2007 and I can only imagine what lies ahead. If I improve in the coming year as much as I did this past year then I am well on my way to leading a life free from chronic pain and suffering. I am starting to think about ideas and plans for the future. I am looking into graduate school programs and job opportunities that I may be able to start this coming year. I feel the seeds of ambition, determination, and drive growing inside me more each day. I want to venture out into the world. I can no longer comprehend what it feels like to want to hide from the world because of my illness. When I was very ill, the days seemed endless. Now I find myself wishing they could be longer. When friends call and ask how I’m doing. I say “Good!” It’s a wonderful feeling to be enthusiastic.
“I’ve Crossed A Line"
I still have a long way to go until I finish the MP. I have plenty of bacteria left to kill in my head, ears, and lungs. I’m still weak and cannot tolerate very much exercise. But I’ve crossed a line. At some point in the last months things turned from bad to better and improvements keep popping up without warning. This link features comments from other patients who are also improving www.marshallprotocol.com/forum2/7287.html.
Based on my experience, it seems that the first year on the MP is definitely the hardest, and that with each coming year, immunopathology becomes much less severe. I feel that fairly soon my symptoms may become so mild that I will be able to function fairly normally. I will be finished with the MP when all possible combinations of MP antibiotics no longer cause any rise in my symptoms. This will mean that all the CWD bacteria in my body have been killed.
‘Science,’ Not ‘Miracle’
Often people who know how desperately ill I was when I started the MP will see me now and say my improved health is a miracle. Kind words indeed, but there is nothing miraculous about the fact that I am healing. My recovery thus far is a direct result of concrete scientific concepts put into practice. It is the outcome of decades of medical research and molecular modeling by Professor Marshall and scientists around the world. I am not planning to stop my MP medications until every single CWD bacteria inside my body has bit the dust. It may still take a while, but I know it’s going to happen. And when it does, I’m going to feel amazing!
Addendum: Several Factors May Artificially Skew the Vitamin D Metabolytes Diagnostic Tests - According to the MP Theory
According to my understanding of the MP theory, it is important to know that levels of 25D and 1,25D may be affected by many variables at the time they are tested – leading to a D ratio that does not indicate Th1 inflammation, even when CWD bacteria are present in the body.
Because of these variables, the MP holds that it is important for people whose clinical picture suggests they may have a Th1 illness to undertake a therapeutic probe in order to find out if they can benefit from MP therapy.
The D-ratio suggests the rate of conversion of 25-D into 1,25-D by CWD bacteria. In patients with Th1 illness, the concentration of the former should go down, and concentrations of the latter should go up.
However, the vitamin D ratio can only serve as a guide to a patient’s level of systemic Th1 inflammation if it is based on ‘unaltered’ levels of 25-D and 1,25-D [levels that have not been altered by other factors].
It is very important to understand that levels of 25D and 1,25D may be affected by many variables at the time they are tested – leading to a D ratio that does not indicate Th1 inflammation, even when CWD bacteria are present in the body.
A patient who is supplementing with vitamin D at the time of the test will skew their D ratio downward by creating an artificially high 25D. This skewed level of 25D cannot be applied to the vitamin D ratio.
A false low level of 1,25D may occur if:
1. The blood sample has been mishandled. Often labs do not realize that a sample of 1,25D must be kept frozen at all times.
2. A patient has a high bacterial load in tissues that are not well perfused by blood (tissues of the nerves, joints and skin). The blood sample will not reflect the correct level of 1,25D present in the entire body.
3. The patient is taking one or more medications which lower 1,25D. These drugs include steroids such as prednisone (lowers 1,25D by 25-40%) and antifungal medications such as Diflucan® and Nizoral® (lower 1,25D by 50 to 80 percent) among others.
4. The patient is infected with a virus and CWD bacteria at the same time. Viral infection (Epstein-Barr, Herpes, etc.) causes a large drop in 1,25D - to below 15 pg/ml in patients with severe infections such as AIDS or hepatitis.
Because of these variables, people whose clinical picture suggests they may have a Th1 illness do a therapeutic probe in order to find out if they can benefit from MP therapy.
Patients begin a probe by taking Benicar® and low-dose minocycline as per the MP guidelines.
If a patient is infected with CWD bacteria, Benicar will cause neurological-type adjustment symptoms, and minocycline will generate an immunopathological response.
This “correct” response to the MP medications is ultimately what will determine whether or not a patient can be cured by MP therapy.
More on D metabolite tests is offered at: http://www.marshallprotocol.com/forum2/366.html
More on the therapeutic probe is offered at: http://www.marshallprotocol.com/forum32/1419.html
Disclaimer: Results in this report should not be considered typical. Amy Proal provides her personal experience with, and understanding of, the Marshall protocol (MP) for the benefit of other readers, but ProHealth/ImmuneSupport.com does not endorse the MP or any protocol as a treatment or cure for CFS or FM. Positive accounts of results are still largely anecdotal, and patients should be aware that, as with any protocol, negative effects could be encountered.
Note: This information has not been evaluated by the FDA. It is not meant to diagnose, prevent, cure, or treat any condition, illness, or disease. It is crucial that you undertake no change in your health support plan or regimen without careful review and discussion in collaboration with your professional healthcare team.