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Aussie Barb
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Posted: Wed Jun 22nd, 2005 21:41 |
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Bacterial Processes Seem Key to CFS Remission
Trevor G Marshall PhD, Director, Autoimmunity Research Foundation Inc
Meg Mangin RN, Director, Autoimmunity Research Foundation Inc
Frances E (Liz) Marshall RPh, Los Robles Regional Medical Center, Thousand Oaks, California
Studies over the last two decades have described tiny 'pleomorphic' bacteria living within the cells of the immune system. Cantwell (1982) documented tiny, coccoid, acid-fast bacterial forms associated with several 'autoimmune' diseases. He used Fite-Faraco stains, and x1000 optical magnification. In 1989 Wirostko, et al, produced Transmission Electron Micrographs of immune phagocytes containing hundreds of tiny coccoid bacterial forms, each around 0.01 - 0.025 microns in diameter, living in colonies within the cytoplasm of the very cells which are tasked with killing such bacterial parasites. However, subsequent attempts at using conventional antibiotic therapies to kill these bacteria have proven unsuccessful.
We identified that the hormone Angiotensin II (Ang-II), and the steroid hormone 1,25-dihydroxyvitamin-D (1,25-D), were key to the Th1 inflammatory biochemistry. When these hormones were controlled (Ang-II blockaded with Olmesartan, and 1,25-D controlled with careful attention to Solar Exposure and dietary intake), combinations of the antibiotics Azithromycin, Minocycline and Sulfa-Trimeth, were capable of inducing remission in Sarcoidosis. These remissions also resolved a second issue, whether such intra-cytoplasmal bacteria were pathogenic or benign. In the case of Sarcoidosis, the coccoid bacterial forms proved pathogenic. Two recent in-vitro studies have described how a similar species of intracellular bacteria directly modulated the transfer factor Nuclear factor-kappaB (NF-kB) in the cytoplasm, initiating a release of mRNA (signaling cytokine release) from the Nucleus. This is likely to be the pathogenic mechanism, and we have described how this mechanism can fuel the granulomatous inflammation of sarcoidosis, an inflammation which is not driven by normal lymphocyte-phagocyte signaling, but by a steady release of cytokines independent of any lymphocytic intervention.
A clinician can measure the levels of 1,25-D and soluble InterLeukin-2-Receptor (sIL2R) in the bloodstream to assess the relative magnitudes of Th1 and Th2 inflammatory processes. Preliminary data from patients with CFS show levels of 1,25-D at, or beyond, the upper limit of 'normal'. This is indicative of an active Th1 inflammatory process. Initial assays have been as high as 106 pg/ml (compare with the 2-sigma population limit of 47 pg/ml).
The use of Ang-II blockade (with Olmesartan) has resulted in profound symptomatic changes, changes which cannot be explained with reference solely to any hypotensive effect of the Angiotensin Receptor Blocker (ARB). Those CFS patients who have been able to weather the consequent hormonal rebalancing have reported dramatic improvement in energy and cognitive functions, energy, together with a resolution of sleep dysfunction.
Administration of the identical antibiotic protocols proven effective in sarcoidosis, has resulted in further symptomatic improvement of CFS. The authors will present data tracking the progress of the initial group of CFS patients being treated with this ARB/Antibiotic protocol.
Will the Marshall Protocol treat co-infections?
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Wed Jun 22nd, 2005 21:45 |
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(filelink)
Success stories Members Testimonies of their improving health:
CFS South Africa progress: About to start Phase 2
Mel's Progress CFS, Neuropathy
Honey's Progress: CFS: excellent news to report.
KFaucher update No CFS anymore
Mel's progress: ME/CFS, auto-immune thyroiditis, endometriosis
K: Phase 2: ME/CFS improvements to severe menorrhagia & dysmenorrhoea: approx 9 months on the MP.
paulalbert: CFS: I'm super-busy these days
Natalie's Story Severe CFS/ME already heading back to health thanks to the MP (10 months & counting..)
Amypea: CFIDS CFIDS, FM, Int Cystitis, Candida, babesiosis, Epstein Barr, Hashimoto, thyroid hormone resistance: AMAZING
Catlady: CFIDS 25+ yrs : getting my life back more and more, and my parents, both in their early 70s as well.
Interview with Peter de Jager is doing very well after suffering from severe CFS and chemical sensitivities (IBS and depression too).
YoKoMo: CFS food sensitivities arthralgia: here’s my concise testimonial!
Interview with Doreen V. - autism, ADHD depression, severe anxiety, CFS
Interview with Paul Albert - CFS, depression, food sensitivities
Interview with Carole Morgan - sarcoidosis, fibromyalgia, CFS
Elijuh: CFIDS, diffuse scleroderma, SLE, Lyme, FM, RA, Raynaud's
Alayne: ME/CFS/FM: improvements very apparent - esp the cognitive
Interview: cognitive-dysfunction
pdejager: Peter: MCS/CFS: improvements update, travelling etc.
RichardM: CFS, IBS, weight loss/thyroid/liver/digestion issues
jeanninehope: CFS FM Lyme Morgellons: Depression.
mike9a: Chronic Lyme/CFS/Stroke: looking better
dimmed wit: CFS: improvements
KFaucher Ken: CFS: I am doing great.
Tom's updates: CFS: Phase Three: Moving toward the prize
Natalia: CFS: end of Phase One summary
Moxie: CFS FM: really enjoying the compliments of how well I am looking.
Adrianne: CFS: six months MP summary of my MP successes
Zars: CFS RSD/CRPS IBS: Crikey! What a massive change since May/June
Abigail7: Anemia, CFS, FUO, Fibromyalgia: my life almost normal again
Tom: CFS: pleasantly surprised at my cognitive improvement.
Marselle: Jamie: ME/CFS: Phase One improvements: tinnitus, psoriasis, energy, mentally
Grace: CFS: Making a cuppa and my improvement with MP.
Karen graceful7: FMS/CFS Meniere's: six months on the MP
Jay4me: Lyme, FM, CFS: improvements. Staph mass gone
Jimmy_jimjim: CFS: Day 28 - amazing mental improvements
Janicew: FM/ME: I am getting better!! After decades of declining health
Alayne: ME/CFS/FM posture, healing.
hellohope: Rickettsia, CFS: from disabled to able.
smccavanagh: Suzanne: CFS: I am making great progress. Phase 3.
mtea: CFS FM Rickettsia: There have been some exciting improvements in phase 1 .
D2 CFS: 1 year on MP. enjoys improved health and Life.
eClaire: CFS: memory and reason
A Journey Towards Complete Recovery From CFS: An UPDATE of My Progress on the Marshall Protocol by Amy Proal (Ames)
Ken Faucher CFS 20 years: Phase 3 update - 2 year progress
Jacque: Rickettsia, CFS: was bedridden. recovery is very real thanks to The MP.
D1: CFS: been overseas and has graduated with high distinctions
Ames: CFS: the Holidays - my progress and activities..
shadowzone: CFS, LGS/Malabsorption/IBS, Rickettsia: about improvement in my lower back.
Saphire: CFS: 3 months MP: improvements stamina, digestive, no headaches, off thyroid meds.
Prugg21 Pam: MCS/CFS/FM 22+yrs: making encouraging progress on the MP.
Jeannine: CFS FM Lyme Morgellons: I feel my old self coming back. six months MP
Katydid: Almost one year on MP - NP was truly amazed at my progress!
Katydid CFS MCS Fibro 6 months
UshiAad: ME: things are getting better!! La Vita e Bella - Life is Beautiful.
Ames Progress CFS/FMS Phase 3 update Thanksgiving
Tom: CFS-18years: I am in a different place, a better place.
Ames: CFS/FMS: spontaneity and better endurance - yay!
Sydney Chris: no more CFS... just over 20 years of CFS & just over 20 months of MP
Hopeful Jill: CFS / Chronic Lyme: restless legs are getting better... and more..
Joyce Waterhouse: CFS/FM/Lyme for 18 years: neurological improvements.
Alayne CFIDS Summary of Improvements (Progress report)
Vicki SA (ME/CFS) Improvements (Progress report)
Sam MCS Insomnia
Sam MCS CFS IBS mini abx vacation was a very encouraging experience.
CFSgirl: Some exciting changes
CFSGirl -fibro lumps gone
CFSGirl: CFS/FMS/MCS Noting Improvements
Ames: CFS/FMS: spontaneity and better endurance - yay!
Ames: CFS FMS: Listing improvements: I am thrilled
Ames: CFS/FMS positive advances
Ames: (scroll down to see ) A Journey Towards Complete Recovery from Chronic Fatigue Syndrome
Alayne: CFIDS FM: The following is a mix of improvements
Sydney Chris: no more CFS... just over 20 years of CFS & just over 20 months of MP
Sydney Chris
Moxie: CFS 24 years - FMS:
Moxie: CFS FMS review of improvements
Life is Beautiful
Sharon: CFS: knees improve
ShrnHml / Sharon CFS MCS EBV MVP TMJ PCOS 28 yrs. Vast Improvements
Carole: PWC 50+ yrs| 20+ CFS FM Pituitary Thyroid IBS Cardiac Migraines Osteoporosis 2/04 Mediastinoscopy ~Sarc Story - Progress Continues!
Carole: MY MP Story
Carole: History and Improvements...
Carole: Edema resolved and Muscle strength and tone return.
Carole: celebrating my most recent test and CT scan results
KFaucher/ Ken: CFS: camping trip
KFaucher/ Ken: CFS 20 years: how much better I can get.
KFaucher: CFS: the MP does work! 6 months on the Marshall Protocol!!!!
KFaucher: CFS: CWD and back pain
RobertTownsend: CFS: Overall progress is great. - my wheelchair has been sold and -I have started riding my racing bike.
Brad and Paulette: Brad's experience of MP with CFS
JudyBeauty: CFS Phase 2 Life is good. I love the Marshall Protocol.
PdeJager/ Peter: MCS CFS improvements
PdeJager/ Peter: MCS CFS: I continue to see signs that I'm getting better
CelticLadee: CF I have great hopes!
CelticLadee: CFS (chronic headaches, ear pressure, teeth pain and brain fog gone)
Catlady: "If you start now, you will have a degree .....
smccavanagh: CFS Progress - how well I look
Lilly: CFIDS Progress, Weight Loss
Tobi: CFS Rickettsia: LISTEN TO THIS! echocardiogram shows no abnormality whatever!
Tobi: CFS Rickettsia: resolved High blood pressure
Catlady: CFIDS Concentration improvements
Huey: CFS symptoms improving
GRACE CFS being able to do things..
Grace All the things I can do
Grace Muscle wasting Muscles regained and healing
Grace CFS improvements
DON CFS symptom report card
Sun & Light Avoidance
See also:
MARSHALL PROTOCOL SUCCESS STORIES
The Marshall Protocol -- simple explanations re History of the MP and Dr. Marshall's credentials
Do CFS patients react differently to the Marshall Protocol?
see Meg @ How many subjects on the MP have Sarc, Lyme, Cfids, etc. .....
Last edited on Mon Sep 15th, 2008 10:58 by Aussie Barb
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Fri Jun 24th, 2005 02:57 |
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(filelink)
Classic history of CFS
From Topic: The CFIDS Association of America, Inc.
The history of the person who finds himself with a CFIDS diagnosis is unique. There is the initial illness -tests show "nothing" - lots of reassurance - "you need some vitamins, rest, less stress". "You're really depressed - what you don't think so? - believe me that's all that's wrong".
Then comes the tests - every kind you can think of , each time hoping for an abnormal result, so there'll be something to treat, but still nothing. The loneliness begins. You know you are sick, really sick, but you are not validated.
Then you find a doctor who "finds something" - mycoplasma? Lyme? EBV? hypercoagulation? YES YES. I AM sick. Something to treat. Then the treatment. Pills, more pills, vitamins, saunas, acupuncture, hyperbaric chambers, antibiotics, I.V.s, money, more tests, more money. Less life, less friends, less support. More fear, more failures, less hope, bigger gap between your knowlege that your life is at risk and those that say -whatever they say.
Fast forward 7,10,27 years. Not a lot of hope. little money, but a little life still in your bones - still undefeated. Isn't that amazing - stilll a bit of fight in you.
Then you come to the MP. A CURE - surely not. You've hoped before. You've done exactly as you've been told - nah! not again.
It is easier to protect yourself - you are so used to disappointment - so used to being a "sick person". It is an act of monumental courage to say, again - I'll try again.
Let us understand those who opt for the known, the familiar, and let us applaud those of us who risk our hopes yet again. ~Tobi
See also Cognitive dysfunction in women with Chronic Fatigue Syndrome: examining the role of the endometrium, the nuclear receptors, and antimicrobial peptides
Last edited on Fri Mar 14th, 2008 15:10 by Meg Mangin R.N.
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Aussie Barb
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| Joined: | Thu Jul 22nd, 2004 |
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Posted: Thu Jun 30th, 2005 15:40 |
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(filelink)
Heavy metals
Q: "Heavy metals seem to accumulate inside cells of many persons having CFS, Lyme and other like-diseases. Is it possible that the load of heavy metals and others substances, like minerals: calcium, sodium, and other toxins, can be really high and that the body can have problems to deal with that? Can it hurt the kidneys or liver while excreting too much bad stuff (while on the MP) that accumulated all those years"
Reply:
This assumes that
1. Heavy metals and 'bad stuff' have in fact accumulated
2. That they are intrinsically bad at these concentrations
Look, I know there are lots of theories about what causes chronic disease, and I know that many of them are very seductive for somebody who knows only enough about medicine to recognize simple chemical names and interactions. Possibly your medical comprehension is more comprehensive than that, but, if it is not, you really shouldn't allow others to persuade you that heavy metals (or exogenous toxins) are going to be any hindrance to your recovery.
The key thing is to kill the pathogenic bacteria, to deal with the cytokine release which results from the bacterial die-off, and to deal with phagocyte and bacterial fragments (including proteins/endotoxins, etc.) Heavy metals and exogenous toxins are not a significant factor in recovery from CFIDS (or Chronic Lyme, or Sarcoidosis.)
..Trevor..
Will heavy metals, toxins or mold hinder my recovery on the MP?
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
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Posted: Fri Oct 7th, 2005 05:02 |
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Length of treatment
(filelink)
this post from Dr Marshall
says in part quote verbatim: "I do think it is important that CFS and Lyme patients do face up to the extent of their illness, however. Think about this - it takes 2 years or more for the bacteria to be killed, at the fastest rate your body can kill them. It is absolutely amazing what that quantity of bacteria must have been doing while they were living in your tissues "
Reply from GeorgeinRollaMO:
Don't think of the two years ahead. Think of how bad the last twenty years were, and the next two years will seem like a pittance to pay for an additional twenty years, or more, of good health to come. 
Dark Vader (aka, George)
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Sat Oct 8th, 2005 03:08 |
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(filelink)
Why does the MP appear to be taking longer to resolve Lyme/borreliosis and CFS than sarcoidosis?
I think that, in general, CFS and Lyme patients have had more long-term intervention from supplements and pharmaceuticals than many of the sarcies. Additionally, their disease is not as apparent as, for example, Lupus or Sarcoidosis, and this means that they generally are more ill before they get help. A sarc patient, for example, may die of pulmonary insufficiency or cardiac arrest before their overall systemic organ status degenerates to that of some of the CFS and Lyme patients.
I don't think there is any fundamental difference in the species, however. I myself suffered from debilitating fatigue for almost a decade, and had to work my life around my unusual sleep and rest patterns. It was seeing that fatigue in the Diabetes patients (whom I was researching) that first made me realize the common threads through all the Th1 diseases.
I do think it is important that CFS and Lyme patients do face up to the extent of their illness, however. Think about this - it takes 2 years or more for the bacteria to be killed, at the fastest rate your body can kill them. It is absolutely amazing what that quantity of bacteria must have been doing while they were living in your tissues
..Trevor..
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I'm interested to know why some people do fully recover without any intervention? What happens within their bodies that does not happen within ours - that is for CFS?
...these chronic diseases wax and wane over a lifetime, yet many patients are prepared to declare 'recovery' if they feel they can cope reasonably well over a month or two, or even a year or two, regardless of the medications they need to take to induce this 'recovery', and regardless of what their blood markers (Triglycerides, LDL Cholesterol, etc) are saying.
Unfortunately, every one of those 'spontaneous remission' stories I have followed up has turned out to be 'wishful thinking' in the long run... Those stories are not confined to CFS, folk with the other Th1 syndromes also tend to minimize their disabilities until they just become overwhelmed...
The same state of mental denial which helps a patient survive from day to day, also discourages them from seeking help until it is very late indeed...
~Trevor
===========================
It takes time to kill the intracellular bacteria and neurological inflammation is especially resistant because nervous tissue is poorly perfused by blood. The folks who are the sickest will need to be very patient because their inflammation is so extensive and it isn't possible to kill the bacteria rapidly without intolerable Herxing.
Last edited on Fri Jun 15th, 2007 19:44 by Meg Mangin R.N.
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Meg Mangin R.N.
Research Team
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Posted: Sat Oct 8th, 2005 22:20 |
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(filelink)
A CFS patient's experience with the Marshall Protocol
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 doctor and researcher Trevor Marshall, 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 gradually kills CWD bacteria, it takes from 1 year to 18 months to induce symptomatic remission. Consequently, no patient with CFS or any other Th1 illness besides sarcoidosis has been on the Protocol long enough to 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 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 binding and blocking several proteins on the bacterial surface. 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 was possible that Vitamin D played 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. 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 reaction when they start to take the drug. 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 patients 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. 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.
Amy Proal
see also:
Ames progress report
Ames: positive advances
Ames: spontaneity and better endurance - yay!
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Jan 2007 follow up article
A Journey Towards Complete Recovery From CFS: An UPDATE of My Progress on the Marshall Protocol
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Aussie Barb
Research Team
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19373 |
| Status: |
Offline
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Posted: Mon Oct 31st, 2005 18:26 |
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(filelink)
The science behind Th1 inflammation is solid
Dr Trevor Marshall wrote:
The science underpinning the MP is now solid, even if a bit complex for most to fully comprehend. I can't change that science. I describe it to you. It may seem like dogma, because it is a lot more solid than anything you have heard before about these idiopathic diseases, but that is not my fault. My model of Th1 disease is crystal clear, and that model predicts accurately. It is not dogma, it is accuracy
When folks suggest changes, such as when Scott suggested we look into Quercetin, we do look into them, and, as in that case, adopt them. It is just that 99.9% of the "noise" out there is just plain incorrect.
The accuracy and utility of our disease model, which has now been verified hundreds, and probably thousands, of times, tends to make me brusque. After all, I have yet to receive a single substantial challenge to the model's scientific validity. I must admit that the shallowness of the few challenges does tend to make me 'brusque' when dismissing them These days my mind is usually miles away, dealing with intricacies of genomics or molecular interactions
Sincerely
Trevor
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| 24+ years not Dx| ABCofMP
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Meg Mangin R.N.
Research Team
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Posted: Tue Feb 28th, 2006 02:19 |
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Articles about a bacterial connection link to CFS CFSbactlink
Stealth Organisms and the link to CFS
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Meg Mangin R.N.
Research Team
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Posted: Tue Feb 28th, 2006 02:23 |
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Clinical trials CFStrialslink
There are no plans for controlled trials of the MP in CFS. There is no funding available for any such trials, and, as you probably know, CFS is not even recognized as a treatable disease at this point. The CFS community has a long way to go before any 'controlled trials' can be started.
Our own Phase 2 study is going along well. It is an 'observational trial,' and as such is generally regarded only as a precursor to more formal trials. Of those CFS patients who stick their head down, most are doing very well indeed, although it is generally a long hard struggle to work down the load of pathogens they are carrying. Most are now reporting their progress in the advanced Phase 2/3 forums. You can also find reports in MARSHALL PROTOCOL SUCCESS STORIES
Dr. Trevor Marshall, PhD
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Margo
Member Advocate
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Posted: Fri Jan 12th, 2007 23:08 |
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(filelink)
CDC moveS towards recognizing CFS
Dr. Marshall wrote:
...Take a look at the excellent summary in the Washington Post
http://tinyurl.com/fzleu
.. Reeves said, but the growing evidence of genetic links should put to rest the idea that the syndrome is a made-up diagnosis for "a bunch of hysterical, upper-class white women."
It sounds like the CDC is moving towards recognizing Chronic Fatigue Syndrome as a valid illness.
Margo
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Parent of teen-aged sarcoidosis/uveitis patient on the MP
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Meg Mangin R.N.
Research Team
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Posted: Mon Jan 15th, 2007 20:53 |
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CHRONIC FATIGUE SYNDROMElink
Diagnostic labels
"CFS and fibro are just labels we use because we just do not know.
As far as I am concerned, it just doesn't matter what bug I have, as long as I leave a trail littered with their dead bodies. (That is the mental picture that gets me through the day.)
We have to treat the patient, not the lab test. If more physicians realized that, we would be a lot better off."
madwolf (Physician's Assistant)
see the FAQ Is the Marshall Protocol an Applicable Treatment for my Disease?
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Meg Mangin R.N.
Research Team
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Posted: Thu Jan 18th, 2007 19:11 |
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(filelink)
What is your take on why this drug is helping these CFS sufferers?
Antiviral may ease chronic fatigue symptoms
"I haven't studied this particular drug in detail. But I can guide you to a better understanding of why so many of these chronic diseases seem to respond to drugs in the short term, but then the patient relapses in the long term (3-10 years).
The FDA monographs says this about the drug (I am not agreeing with what they are saying here, I have no personal knowledge of its accuracy, but, for the moment, let's assume they are correct)
http://www.rxlist.com/cgi/generic2/valganciclovir.htm
Valganciclovir is an L-valyl ester (prodrug) of ganciclovir that exists as a mixture of two diastereomers. After oral administration, both diastereomers are rapidly converted to ganciclovir by intestinal and hepatic esterases. Ganciclovir is a synthetic analogue of 2’-deoxyguanosine, which inhibits replication of human cytomegalovirus in vitro and in vivo.
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The virustatic activity of ganciclovir is due to inhibition of viral DNA synthesis by ganciclovir triphosphate.
Antiviral Activity:
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Sensitivity test results, expressed as the concentration of drug required to inhibit the growth of virus in cell culture by 50% (IC50), vary greatly depending upon a number of factors. Thus the IC50 of ganciclovir that inhibits human CMV replication in vitro (laboratory and clinical isolates) has ranged from 0.02 to 5.75 mg/mL (0.08 to 22.94 mM). Ganciclovir inhibits mammalian cell proliferation (IC50) in vitro at higher concentrations ranging from 10.21 to >250 mg/mL (40 to >1000 mM). Bone marrow-derived colony-forming cells are more sensitive (IC50= 0.69 to 3.06 mg/mL: 2.7 to 12 mM).
In layman's language this is saying that the drug has a significant effect not only on the replication of the virus, but also on the replication of human cells, and particularly on bone-marrow cells.
In other words, this drug doesn't just affect the viruses, it affects the host, and will necessarily affect the immune system, as is documented in this study:
http://tinyurl.com/ywmu8j
You see, even though the drug is supposed to treat only a virus, it has profound effects on other immune functions in the human body. We know that only a clean immune system is capable of attacking the L-forms, and that even very small changes, like taking the MP antibiotics more frequently, can reduce the ability of the immune system to kill the intraphagocytic bacteria causing Th1 disease.
Suppressing the immune system makes people feel better, in the short term. But the bacteria proliferate with hindrance from the immune system, and ultimately the patients will relapse. It is just a matter of time.
I hope this helps you understand why chronic disease is so tough to study, and even tougher to treat, and why our work has succeeded where others failed. There were lots and lots of little bits of knowledge which had to be assembled and analyzed..."
..Trevor..
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Meg Mangin R.N.
Research Team
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Posted: Wed Feb 7th, 2007 00:08 |
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(filelink)
New name for chronic fatigue syndrome - 'Myalgic Encephalopathy'
The CFS Name Change Advisory Board - whose combined research and clinical experience totals more than 150 years - met in Florida January 12, and reached a consensus agreement that a new name should be adopted for Chronic Fatigue Syndrome. While it is certain that no name will please all patients, the group feels that the new name they propose will improve the legitimacy of the disease, and remove the stigma of having a disease with 'fatigue' as the primary descriptor.
'ME' has historically been used to describe 'Myalgic Encephalomyelitis' (nervous system inflammation involving muscle pain) - a term that does not accurately describe the disease process in all patients. Committee members preferred 'Myalgic Encephalopathy' (nervous system pathology with associated muscle pain), which is also abbreviated 'ME'. This satisfied the researchers that this form of the term 'ME' is diagnostically accurate.
Here is the full story
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