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A Journey Towards Complete Recovery from Chronic Fatigue Syndrome: The Story of My Progress on the Marshall Protocol

  [ 1003 votes ]   [ 3 Comments ]
www.ProHealth.com • July 25, 2005


By Amy Proal Amy Proal is a recent graduate of Georgetown University with a B.A. degree in Biology. She wrote her Senior Thesis on Chronic Fatigue Syndrome. Also a columnist for Fibromyalgia AWARE Magazine, she writes often about her battle with CFS and FMS. Last year during the Christmas holidays my body did not cooperate with my festive state of mind. Instead of decorating the tree or taking a walk in the snow, I found myself lying listlessly on the couch, suffering yet another relapse of my worst CFS symptoms. A series of extensive blood tests confirmed the fact that my body was far from functioning properly. At only age 23, I had hormone levels lower than post-menopausal women. Despite the fact that I was on four strong antifungal drugs, my digestive system was overtaken by Candida. My stomach was barely able to tolerate any food besides chicken and rice. Since I’ve suffered from severe CFS for at least three years, I wasn’t surprised to find myself nearly bedridden yet again. Luckily, my doctor is one of the top CFS specialists in the country. I contacted him about my negative circumstances, expecting him to adjust my supplements or pain medicines. Instead, he wrote back a single sentence that has since drastically altered my health and most likely my entire life. He urged me to “try the Marshall Protocol.” Attached to the e-mail was a list of instructions with the title “Phase 1 guidelines.” 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. The MP, created by researcher Trevor Marshall, Ph.D., is based on the idea that CFS and many other chronic diseases (termed Th1 illnesses, including fibromyalgia, lupus, and rheumatoid arthritis), are caused when certain individuals accumulate large amounts of bacteria that have mutated and lost their cell walls. Because of this mutation, antibiotics are unable to kill them directly. Unlike other forms of bacteria, cell wall deficient (CWD) bacteria have also developed the ability to remain alive and proliferate undetected inside the very cells of the immune system that the body uses to kill invading pathogens, allowing them to generate a wide array of painful symptoms. The MP was first created to treat sarcoidosis, an illness from which Dr. Marshall himself suffered. After making several key discoveries about CWD bacteria, Marshall developed and fine-tuned a treatment plan aimed at slowly killing these pathogens. In 2002 a group of sarcoidosis patients began this novel course of therapy. Eventually, all of these first patients on the Protocol obtained complete symptomatic remission and remain healthy to this day. This marked the first time a group of patients has ever recovered from sarcoidosis. Once news spread that the MP had successfully killed the strains of CWD bacteria involved in causing sarcoidosis, several people with other Th1 illnesses believed to be caused by different species of CWD bacteria decided to begin the Protocol as well. Since the MP slowly kills CWD bacteria, patients start to heal gradually over an extended period of time. The Protocol takes from 1 year to 18 months to induce symptomatic remission. However, once on the MP, patients begin to notice improvements little by little. As Dr. Marshall’s research team likes to say, “Healing creeps up on you, just like the disease did.” Due to the long recovery period, no patient with CFS or any other Th1 illness besides sarcoidosis has been on the Protocol long enough to fully recover. However, patients with other Th1 illnesses are showing identical responses to the medicines used by the MP as the original sarcoidosis patients who were cured, a very positive sign they too will end up as healthy as the first group who finished the Protocol. The science behind the MP is complex, but before I continue telling you my own story please bear with me while I quickly describe a few basic concepts which help explain how the medicines used by the MP are able to target CWD bacteria. First, it is critical to realize that CWD bacteria are strongly influenced by Vitamin D. The body obtains forms of this vitamin from three sources: sunlight, artificial light that enters the eye, and foods that contain Vitamin D. One of the most exciting aspects of the MP is the fact that people who suspect they suffer from a Th1 illness can actually take a simple blood test which may suggest the presence of CWD bacteria. Marshall discovered that once inside a cell, CWD bacteria activate an inflammatory pathway that is responsible for generating many of the painful symptoms of Th1 diseases. One of the major molecules involved in this pathway is 1,25D, an activated form of Vitamin D that functions as a hormone. Once inside a cell, CWD bacteria convert the regular form of Vitamin D (termed 25D) into 1,25D at a much higher rate than in healthy cells. Thus blood tests reveal that patients with Th1 diseases tend to display much higher levels of 1,25D than their healthy counterparts. Marshall also came across a drug called Benicar. Originally created to lower blood pressure, it also has the ability to lower levels of 1,25D. Thus, when patients take Benicar and also strive to lower Vitamin D levels by avoiding sunlight and bright lights, they are able to effectively disrupt the inflammatory pathway responsible for many of their painful symptoms. Once the inflammation around a cell has been reduced, antibiotics are finally able to penetrate the cellular environment and come in direct contact with CWD bacteria inside. Although antibiotics are not able to kill the pathogens directly, they are able to greatly weaken the bacteria by blocking the production of bacterial proteins. This allows the body’s own immune system to recognize the weakened pathogens and finally kill them. Patients who begin the MP start working to lower their 1,25D by taking Benicar every 6-8 hours, and eliminate all sources of Vitamin D from their diet. Next they start Phase 1 by taking an antibiotic called minocycline every other day. When patients reach Phases 2 and 3, other carefully selected antibiotics are introduced in a similar fashion. A key element of the MP is that antibiotics are taken every other day. This “pulsing” of antibiotics allows levels of the drug in the body to dwindle to lower concentrations where it becomes more effective at penetrating inflamed cells. It is very important to understand that, as CWD bacteria die, they cause what is known as a Herxheimer reaction, a situation fondly nicknamed “herx” by those of us on the MP. The term refers to the fact that dying bacteria release toxins into the bloodstream and generate temporary hormonal imbalances. This means that once patients begin the MP, each dose of antibiotic will cause them to feel bad for the period of time it takes their body to deal with the consequences of dying CWD bacteria. After contemplating the biology and antibiotic regimen behind the MP, my head began to swim with questions. I was immediately drawn to the fact that Marshall viewed CFS as a chronic infection. From day one, I have had a strong gut feeling that my illness is caused by a pathogen. Over and over I have repeated this conviction to doctors who instead attributed my symptoms to nutritional or hormonal imbalances. As the person who can actually feel the extent of my pain, I know that my illness is the result of something far more complex. The MP finally offers a rational and logical explanation for my symptoms. At first I was skeptical about a few aspects of the Protocol. I wondered how it is possible that Vitamin D plays such a crucial role in Th1 diseases. During the summer I’m accustomed to spending hours by the pool, basking in the sun until I develop a dark tan. It didn’t seem to make sense that during periods in the sun, I had usually started to feel slightly better. I decided to log on to the Protocol’s web site and see if it addressed my concern. The site, dedicated to explaining and promoting the MP, is www. marshallprotocol.com. The site is divided into several different forums, some of which offer direct information. One of these forums contains a list of frequently asked questions. Within a matter of minutes I found a question titled “But why do I feel better during the summer?” My question exactly! I read a concise paragraph explaining that most of our day-to-day symptoms result from toxins released by a small amount of CWD bacteria that our immune system kills on a regular basis. However, once strengthened by high levels of Vitamin D (which the body makes in response to sunlight) CWD bacteria become too strong to be killed by the immune system. Fewer toxins enter the bloodstream, and most people begin to feel better. But during colder months, when Vitamin D levels tend to drop, CWD bacteria become weaker. Our immune system is able to kill a small number of the pathogens again, causing many people to relapse and feel worse during the winter. This observation certainly rang true in my case, explaining why now, around Christmas, I found myself struggling to get out of bed. Once I started to understand the interactions between CWD bacteria and Vitamin D, I became even further convinced that Marshall’s discoveries truly explained the progression of my disease. As I perused the forums with growing excitement, it wasn’t long before I realized the web site is an almost unending source of helpful information. I became a member of the site by filling out a small profile and choosing a member name. As a member, I am able to post questions in several forums related to different aspects of the MP. Questions are answered by one of several moderators, some of whom are nurses. Other members are also able to respond to posts in order to offer advice that stems from direct personal experience. I remember tentatively posting my first question, and the surprise I felt to see it answered in a matter of minutes by one of the moderators. I have yet to see a question go unanswered, or even left without a response for more than a few hours. Since that first day, I have written almost 140 posts. In my case, it took only a few hours on the web site to get a good idea of the MP. I was ready to begin! In fact, I was so eager to start that I practically fell off my chair trying to find my phone in order to call my doctor. However, since I only had one month left before my college graduation, we decided that I should wait to begin the medications until I was finished with school. Nevertheless, I started to avoid light and remove sources of Vitamin D from my diet. I began adjusting my apartment so that it would become what I refer to fondly as my “cave.” I put dark curtains over the windows to block sunlight from entering the room. I bought low-watt bulbs and turned down the brightness on my TV and computer monitor. And then.... I ordered my “shades.” While on the MP, it is important to wear a special type of sunglass made by a company called Noir Medical. They are designed to block not only UV light, but also infrared and bright lights. Next, I consulted the MP web site to learn which foods are “safe” to eat because they contain no Vitamin D. The most important foods to avoid are fish, Vitamin D-fortified milk, and eggs. Although removing these items from my diet does impose limits on what I can consume, I find that it is very easy to eat a wide variety of meals that do not contain these products. In final preparation to begin the MP, I stopped taking most of my medications, except for my sex and thyroid hormone supplements. At first I wondered if stopping most of my supplements was a good idea. However, I’ve realized that taking Benicar as directed by the MP allows the immune and endocrine systems to begin to readjust to a state of equilibrium. This means that if a person eats a well-balanced diet, the body can once again assimilate more than enough vitamins and minerals naturally. As I said goodbye to my supplements, I realized that for the first time I would be beginning a course of treatment that actually targets the CAUSE of my illness. All my previous treatments had used supplements in order to merely placate my symptoms. However, the medicines used by the MP work to target the actual source of my pain. I was amazed that after only about a week of avoiding light and Vitamin D I started to feel better. I had more energy. For the first time in years, I woke up to find that my muscles felt relaxed rather than stiff and painful. I was also happy to notice my constant cravings for carbohydrates and sugar begin to dissipate. The day after graduation, I celebrated by taking my first dose of Benicar. Each patient who begins the MP reacts differently to Benicar, since it can cause a variety of hormonal adjustments as it begins to lower 1,25D. In my case, the medication simply augmented the positive changes that had started to occur in the previous month. My muscle pain literally disappeared. My energy level grew so high that I practically paced back and forth inside my apartment thinking up tasks that required movement. By this point I had been wearing my Noir glasses for several weeks. When they first arrived, I had expected the frames to be incredibly bulky or unflattering. But I was pleased to find that, although they are somewhat large, they looked very much like a normal pair of sunglasses. Getting the correct glasses was very important in allowing me to progress on the MP. This is because of the fact that, after starting Benicar, I became very sensitive to light. A great number of Th1 patients experience this photosensitivity as they begin to heal. My light sensitivity varied depending on the day, but sometimes I found that even normal indoor lighting or watching TV could make my eyes and head feel strained. Thus, the Noir glasses were crucial (and remain crucial) in allowing me to function comfortably around different sources of light. Becoming light sensitive required making several lifestyle adaptations. Although some may think I viewed this reaction as a negative situation, I was actually happy to note this change in my symptoms. In fact, reactions such as light sensitivity bring me to discuss what I find to be one of the most appealing aspects of the MP. This is the fact that people with Th1 illnesses react to the MP medicines in drastically different ways than normal healthy individuals. If I did not have CFS, and if my CFS was not a result of CWD bacteria generating high levels of 1,25D, then Benicar would not readjust my hormones in a way that causes me to become light sensitive. Thus, my light sensitivity confirms the fact that I do indeed suffer from a Th1 illness, and, most importantly, that my disease is directly influenced by Vitamin D. Another important sign that confirmed that the antibiotics were indeed starting to weaken my CWD bacteria occurred when I experienced my first “herx.” After swallowing my first dose of minocycline, I waited somewhat nervously to see what would occur. It took approximately 18-20 hours to sense a change in my symptoms. Pressure began to increase in the front area of my head, my glands became slightly swollen, my throat somewhat sore. It was by no means a drastic alteration in my condition, but I was able to recognize a distinct change from the way I had felt in the previous weeks. One of the most welcome aspects of the Protocol is the fact that it allows patients to be able to control the severity of their herx reactions. Each antibiotic required by the Protocol is introduced slowly, so that the body is never forced to deal with excessively high amounts of dying bacteria. MP patients can decide how long they want to spend on a particular dose of antibiotic in order to ensure that they are herxing comfortably at that level before moving on to take a higher dose. This allows members to progress on the MP at their own pace, and means that people infected with greater amounts of CWD bacteria do not tend to suffer more than others who may not be as sick. I have little trouble herxing on a regular basis, but the symptoms I experience differ depending on the day. There is no way to predict which symptoms may arise from a particular herx. Occasionally my herxes affect internal organs, causing pain in my lungs and throat. Other herxes have induced more mental reactions such as dizziness and disorientation. Some people may be distressed by the fact that MP patients need to herx in order to slowly heal. It may be encouraging to hear that, so far, my herxes have been much more tolerable than I first imagined. Not once have any of my herx reactions come close to putting me through as much suffering as the symptoms I experienced on a day to day basis before starting the MP. I also feel that a certain sense of reassurance begins to develop once a person begins herxing on a regular basis. A healthy individual would certainly not experience calculated periods of feeling worse several hours after taking a low dose of pulsed antibiotics Thus, these reactions reinforce the idea that the antibiotics are truly coming in contact with CWD bacteria. I believe the pain of herxing results in a completely different state of mind than the mental anguish generated by normal disease symptoms. When I was simply sick, without a reasonable explanation for why I felt terrible, even mild symptoms could lead me to feel depressed and weary. However, herxing is “pain with gain”. I may not feel well, but I understand the reason behind my pain and, most importantly, I know that my current suffering will allow me to feel better in the future. In fact, ever since I started the MP, I am actually happier on days when I feel bad. Now when friends call me up and hear I’m feeling “under the weather”, they have learned to respond with something along the lines of “great, keep it up!” Herxing on a regular basis makes me confident that CWD bacteria are indeed being killed as the MP specifies. However, Marshall has also compiled a series of blood tests that suggest if levels of CWD bacteria are decreasing. This means that a person on the MP can look at actual numbers and test results to confirm that the antibiotics are generating the correct effect. Once again, the availability of blood tests which help me track my progress sets the MP apart from most other courses of CFS therapy. In the days before I started the MP I could only guess which, if any, of my supplements might actually be affecting my health. Another appealing aspect of the MP is the fact that the web site allows patients to become connected with a wide variety of other people, all of whom are “in the same boat.” If I post a question, it’s almost certain that other members will respond with compassion and insight. When I’m facing a problem, chances are somebody else has already bumped into the same obstacle and will give me firsthand advice about how they overcame the difficulty. Soon members on the site become familiar with the moderators, who spend countless hours keeping close track of each patient by reading their “progress report.” Members are urged to create these reports by starting a “thread” in which they describe their symptoms, observations, and concerns. How often a person chooses to post is left completely up to them. Some members post their reactions on a daily basis. Others post once in a while, choosing to write only when a specific issue arises. Dr. Marshall himself often responds to posts and progress reports, showing that he keeps careful track of his online members as well. Posts written for the board may offer words of encouragement, but should focus on medical issues related to the MP. However, members are able to offer one another emotional support through private messaging. Each member is given their own mailbox, where they can send other members confidential letters. My mailbox abounds with messages from people all over the world, offering advice, encouragement, and even funny anecdotes. I correspond with people from Australia, the Netherlands, England, and all across the USA. Some of them have turned into good friends. Before beginning my medications, I even spoke to several members on the phone in order to clarify any remaining doubts I had about how to correctly start and follow the MP. After years of feeling somewhat isolated and alone with my illness, it’s been great to suddenly be able to correspond with so many people who truly understand the challenges of dealing with a Th1 disease. At first I thought that living in a darkened environment during the day might be difficult to endure. In the beginning, things did indeed seem a little dark. However, over time I have gradually adjusted to my new surroundings to the point where I hardly recognize that my rooms are somewhat dim. My glasses are comfortable, and I have become so accustomed to wearing them that I forget they are on. When I go outside, the world does seem very bright, but I’m able to tolerate the light well by wearing my darkest pair of glasses. I realize that for those people with Th1 illnesses who are able to find the strength to work, adjusting to the requirements of the MP may become a greater task. However, as far as I can tell, it seems like most people now on the MP who worked before starting the Protocol were able to keep their jobs. Those who work inside have generally talked with their bosses and found ways to darken their working environment so that they are not exposed to sun. Since they are able to slowly increment their antibiotics, few people complain that herxing has prevented them from making it to work. Of course when I first learned about the MP, I wasn’t excited to hear that I would have to wear sunglasses at all times. I also wasn’t thrilled by the fact that if I leave my house during the day, I need to make sure all my skin is blocked from the sun, meaning that I end up wearing a hooded coverup and a hat as well. Occasionally I get strange looks from people who must wonder why I am taking such lengths to avoid the sun. But for the most part, my new look has been received very positively by those around me. Like most victims of CFS, I look very healthy on the outside, making it difficult for others to believe the pain and suffering I endure on the inside. However, I have been interested to note that in several cases my glasses seem to serve as a sort of outward physical marker that helps remind people of the fact that I am truly ill. Thus, for the most part, many people have actually treated me with more compassion, concern and respect since I started the MP. Do I miss sitting out on my deck and spending time by the pool? Yes. But there is not a sliver of doubt in my mind that giving up these pleasures is a minimal price to pay in order to regain my health. The changes required by the MP may seem burdensome to someone who is not familiar with how hard it is to struggle daily with a Th1 illness. However, I believe that for those of us who have suffered debilitating pain for years and perhaps tried even more extreme and painful methods of treatment, the sacrifices required by the MP are quite tolerable. Sure, there are days when I’m herxing and find myself heading for the couch. But for those of us who have suffered from chronic diseases for long periods of time, this situation is hardly unfamiliar. At the current moment I have been on the MP for only three months. I have a long way to go before I destroy all the CWD bacteria that have been growing in my body for a long period of time. But there is no doubt in my mind that I have chosen the right course of therapy to treat my illness. Already I notice an improvement in the way I feel on days when I am not herxing, and I can feel my body beginning to slowly heal. My energy continues to grow and my muscle pain remains almost nonexistent. I stopped my sex hormones about a month into the MP. Despite this fact, my hormone levels appear to be returning to normal due to the fact that last month I got my period for the first time in three years. I no longer take my thyroid supplement. To my amazement, no signs of Candida have returned and my digestion has actually improved. Slowly I have added back dairy products into my diet with no adverse affects. My sleep has improved as well. Before starting the MP, my sleep was disrupted and unrefreshing despite the fact that I took several sleep medicines. Now, due to the hormonal readjustments caused by Benicar, I’ve stopped one of the medicines, and generally sleep a solid 7-8 hours. Another positive sign is that my light sensitivity is already starting to decrease. Although I am still bothered by bright fluorescent lights and intense sunlight, I can comfortably tolerate normal indoor lighting as long as I am wearing my glasses. There is no doubt that the MP requires a strong commitment. It involves several lifestyle changes in order to avoid light. Herxing can be difficult and uncomfortable. Finally, the MP is not a quick fix. It requires a great amount of patience to follow the MP guidelines for a year or more in order to obtain symptomatic remission. But for the first time since becoming ill, I feel that I am in control of my illness. I see the light at the end of the tunnel. It may be a long tunnel, with a variety of difficult twists and turns, but in the end I know I will make it through. I hope you will join me on the other side. Author's note: Dr Marshall was awarded a Ph.D. for a thesis describing "Modeling of the Insulin-Glucose Metabolism in Healthy and Diabetic Individuals." He has many publications in the medical literature, spanning more than 20 years. He specializes in solving problems - in medical research - and is not a licensed medical practioner. He is, however, happy to share his discoveries with your primary care physician at medical conferences, and even by telephone. There is also a special private area of his website MarshallProtocol.com reserved for licensed medical practitioners to discuss their patients with the Autoimmunity Research Foundation's research staff. The website for the MP is: www.marshallprotocol.com EDITOR'S NOTE: Please be aware that Trevor Marshall, Ph.D., sometimes referred to as "Dr. Marshall" in the following article, is not a medical doctor (he is not an MD) but rather a research scientist with a doctorate degree. Amy Proal provides her personal experience with the Marshall Protocol (MP) for the benefit of other readers, but ProHealth/ImmuneSupport.com does not endorse the MP as a treatment or cure for CFS.


Please Discuss This Article:   Post a Comment 

Marshall Protocal
Posted by: ida01
Feb 7, 2007
I have Severe Fibromyalgia/CFS, RSD. How can I get on this journey to recovery on the Marshall Protocal. I see a neurologist/pain managemaent doctor regularly. I take so much medication, I feel like a walking drug store. If this can help me, like Amy's story, I would be born again. I haven't been myself in so long, I can't remember who I am. I lost so many years of my life it is very sad. I would be so greatful if someone could truely help me, if there is really something out there that can help, not onlt me, but all that suffer from Fibromyalgia like myself, and I know there are thousands like me. Can someone contact me? My e-mail address is lmida16@rochester.rr.com I have been seen by so many doctors where I live, there aren't any left for me to even believe they can help. All I get is more medication. I am not one to sit around and feel sorry for myself. I may struggle, but I think positive and keep going. I may pay for it during the day or in the evening, but at least I try and have faith. Please help me, and contact me about this treatment, Marshall Protocal, Thank You. Sincerely,ida01
Reply Reply

MARSHALL PROTOCOL
Posted by: coloralive
Feb 14, 2009
I have been on the MP for over 7 months. I started Phase 2 a week ago. Up to now I have been in misery. My vit.D 25 is 40 and my vit. D 1.25 is 36. Can you give me any idea when i am going to feel human before I call it quits.? Thank you Marietta
Reply Reply

insurance coverage of benicar
Posted by: weedeater
Mar 19, 2012
I am not able to find any clinical studies to submit to my insurance carrier so that they
will pay for the benicar. Surely you can provide these references for us please since
this is an otherwise outrageously expensive drug.
Thank you.
minne_me
Reply Reply


Post a Comment

 
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