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Posted: Mon Mar 21st, 2005 15:52 |
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What degree of healing is possible using the MP?
The journey to recovery using the Marshall Protocol is a slow process; you cannot have a timetable set in stone. Both patients and physicians should be aware that this treatment is not a quick fix, nor can it be, due to the fact that immune system reactions must be regulated so it remains tolerable.
Recovery of health will be as insidious as the original decline into disease and disability. Initially there will be instances of temporarily lessening pain and/or improved functioning, which may seem somewhat insignificant, given past experiences of waxing and waning disease. Over time, these pain-free episodes and improved functioning become more enduring. The eventual, cumulative effect of treatment is that the patient regains ability and health.
How do we define the end points of the Marshall Protocol therapy?
We define successful endpoints as resolution of illness, as indicated by a return to family life and work, return of blood work inflammatory makers to normal, and resolution of signs of inflammation on imaging. see list below..
What happens on the MP?
In addition to the immunopathology, there is a slow course toward recovery, which we define as full health – not simply how patients felt before their diagnosis. This is a healthy state that will initially seem unfamiliar to people who have been living with chronic disease. Patients have often been sick a long time and have adapted to illness as their “normal” state, even though it may have been sub-clinical.
How has success been defined in the past?
In the past, success has been defined as radiographic clearing, resolution of lesions (skin and/or tissue), or any measurable decrease in the degree or extent of disease.
What are some of the words that have been used in the past to define success?
In the past, autonomic remission has been identified when there has been any noticeable improvement without treatment intervention.
Induced remission has been the term used when there has been improvement through use of steroids, IV antibiotics or other medications.
What was wrong with past endpoints for Th1 disease?
One of the main problems was lack of long-term evaluation of patients. The British Thoracic Study of sarcoidosis patients, for example, was only 18 months long. Another problem has been that systemic effects of disease, such as fatigue and pain, have been excluded as endpoints. Further, there has somehow been a misconception that remission could last a lifetime. In reality, remission is accompanied by recurrence and relapses. Gottlieb et al (1997), in their study of sarcoidosis patients, found a 74% relapse rate in patients with treatment-induced remission, while only 60% of patients identified as having a favorable prognosis actually sustained remission over 130 months.
What will be needed in future studies of Th1 disease?
In the future, we need long-term studies of Th1 disease lasting 5-10 years, with endpoints assessing systemic illness.
What about the gap between the public and the medical professionals’ perception of success?
There does seem to be a difference in perspective between the public and medical professionals’ definition of successful treatment, as well as their concept of a cure. The public’s higher expectation is exploited by media reports of promising new treatments on the horizon. This makes it difficult for patients to assess the significance of any new research.
For example, a Dow Jones Newswires article on Mar. 4, 2005 about the FDA restricting gene therapy described the patients who had undergone treatment as “basically cured” – even though three had developed leukemia and one died.
The journey to recovery using the MP will be as insidious as the slow onset of disease.
Suddenly, patients will realize they are doing something they could not do before, such as walking without pain. As these experiences accumulate and become more extensive, patients may continue to be surprised at the state of “normalcy” they achieve. They eventually reach a higher level of functioning and reliable health than before treatment.
Annual antibiotic cleanup
The immune system seems to be able to do the cleanup job on its own, once folk have fully recovered. IMO There is no harm in doing an annual cleanup though - but it no longer seems that it will be necessary to maintain good health. ..Trevor..
Stage 5 of immune system recovery...Benicar is purely palliative
"Those of us who were really sick before starting our recovery (which is just about everyone in the MP cohort) will have 'hiccups' in their recovery trajectory as their immune system gradually transitions back to becoming fully functional again.
The immune system is far more capable of attacking all the varied species of bugs in the microbiota than are the antibiotics, and as the immune system begins to do so, there will be patches of intense inflammation which we have to manage.
When it is the activated immune system which is causing the IP, then Benicar becomes purely palliative, the immune system no longer needs the VDR activation function which Benicar provides. Our Stage 5 document therefore suggests very frequent dosing, including sublingual, as necessary to try and keep a lid on the inflammation.
http://autoimmunityresearch.org/stage5.pdf
Luckily, Benicar can still be used to deal with surges in IP when the immune system finds patches of bugs which have escaped the earlier antibiotics (eg in fibrotic tissue). For those of us that were really ill to start with, there appear to be far too many of those "patches" of bugs popping up for the immune system to go after 
..Trevor..
See also:
MARSHALL PROTOCOL SUCCESS STORIES
The DVDS of our 2005 and 2006 Conferences highlight many patient testimonials of the MP. A transcript of the LAX conference Recovery Panel is available here.
How long does the MP take?
Why does the MP take so long?
Energy level of MP Graduates and the links within..
Carole Success
What tests do I need to monitor my progress on the MP?
Can I go out in the sun again after remission? How will I know when I've recovered?
Phase 3 Members discuss cure: Robertrr, Chris, Julia.
(for more information, scroll down)
Last edited on Thu Aug 21st, 2008 21:56 by
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Posted: Thu May 5th, 2005 06:06 |
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filelink
Getting your life back
"I think you need to understand that everybody gets their life back by about 12-18 months, and they stop worrying about anything at that point. It is just plain sailing from there on. The amount of herx you get beyond that point doesn't cramp your style in any way. Similarly, at that point nobody cares too much about having to take the ARB and antibiotics for another year or two - they have their lives back, and nothing matters any more" 
I was pretty well 'recovered' at about the 2 year point, but had consistent mental and physical improvement right out through years 3 and 4. I was very sick to start with, having had Sarcoidosis since 1967, age 19.
At about the start of year 4 I no longer had any significant photosensitivity, although I did suffer some Phase 4 problems (I promise I will get around to writing these up as soon as we get more data...) as my immune system transitioned back to full health. At the current instant (5 years, 13 days) I no longer get noticeable immunopathology from any of the antibiotic combinations, and rarely bother to take abx, as the immune system seems to be doing a good enough job on its own. I am still taking Benicar, at about 8-10 hour intervals, 'as needed', so there is still bug killing going on, but I am no longer really aware of it.
Other early-adopters, such as Meg, Belinda, and MsDale, seem to be following a very similar trajectory.
Sarcoidosis took 34 years from my life, but I can now spend my time planning out how I want to spend the next 34 years.
..Trevor..
Hindsight is 20:20. Nothing will teach you as much about this disease than your recovery from it I suspect there are even more revelations ahead
..Trevor..
-Sarcoidosis isn't a fixed set of symptoms, and when those symptoms resolve, you're cured. Sarcoidosis is just a label stuck on a group of testable conditions by our noble but highly human and fallible medical guides.
When I found I had sarc about five years ago, as far as I was concerned I was a moderately healthy person with just a serious eye condition and a bad reaction to a combination of a cod liver oil supplement and a sunny holiday. If I could have had those two things - uveitis and hypercalcaemia - cured, I would have happily gone back to being a 'moderately healthy' person, albeit a rather allergic person, with a few signs of getting older...
I didn't like the idea of steroid treatment, and decided to try the MP instead. My hypercalcaemia was cured in the first few weeks, and the uveitis was cured in the first couple of months. So I was cured of my sarc symptoms, the only ones I knew about (I never had it much in the lungs, which is unusual).
But in my 'moderately healthy' state, I also had:
fatigue, ankle osteoarthritis, knee stiffness & pain, muscle cramps, limb & joint pains, restless legs, ‘tennis elbow’, carpal tunnel syndrome, sweats, cough, dry mouth, tinnitus, numbness & nerve pains, lifelong eczema, hay fever, swollen glands, nose bleeds, nocturia (needing the bathroom in the night), dust mite allergy, unexplained bruising, arm fatigue (couldn’t reach something off a high shelf), phobia, brain fog, inability to read or concentrate, memory loss, and mild Obsessive Compulsive Disorder…
Through the process of immunopathology, I came to realise that all these were symptoms of Th1 disease, and as I kept going on the MP, they began to resolve. The only ones I still have some bother with (apart from a bit of herxing sometimes) are ankle arthritis (improving slowly), knee stiffness (improving slowly), restless legs (less frequent), and eczema (comes & goes with certain antibiotics).
Now, by your standards, am I cured of sarc? 
Julia 
-We have to be careful about the language here, as some medical terms are going to change with acceptance of the Marshall Pathenogenisis.
Do you have any sarc related symptoms anymore?
The doctors who diagnosed my sarcoid at Robert Wood Johnson only looked at a few of my problems as sarcoid related: the fevers, and severe leg pains. The rest of the trouble, from irritable bowel to retinopathy to diabetes were either considered to be totally separate or prednisone related.
I know that all the problems were TH1, whether called sarcoid or not. As far as RWJ is concerned, I'd be cured. As far as I am concerned, I'm not. I've had four medically impossible or improbable cures already - PSA normal without intervention (other than MP), no more sarcoid fevers or pains, no diabetes, and eye trouble stopped. That's ingoring all the subjective things like back pains, depression, mental fog, energy levels and so on.
When things stop getting better, I'll stop the MP. But not until then (God and the government willing.)
This is still in clincal study form. You do have the option of waiting until Doctor Sharma accepts the MP (or hell freezes over) to do this, or the FDA puts it into some list or another of accepted medical practice.
Your choices are:
1. prednisone/methotrexate/remicade forever on a down slope.
2. MP (maybe forever) on an up slope.
3. try alternative therapies ...
4. wait for the MP study final result, and it's promotion by the FDA.
Maybe nobody ever gets off the MP. I can live with that, as all the other choices are in the down slope group. The MP is the only one with a solid record of success.
However, I don't believe it. The reaction I'm getting from the max dose of antibiotics tapered off, and the underlying problem went away. The reaction I got from prednisone tapered off, and the underlying problem was worse and I had to up the prednisone.
If you can't accept the risk of joining a clinical study, then the MP maybe isn't for you right now. Waiting for a final understanding of the MP by the FDA, acceptance of the MP by all and sundry, is a choice. It's not one that was going to be timely enough for me. You are going to have to decide for yourself.
The final note I'd like to say is that there is a huge range between the results of prednisone therapy and a 'miracle cure' (like a few weeks of penicillin for acute syphillis). I would not let the perfect get in the way of the pretty-damn-good MP.
Chris
-Perfection is the enemy of "Good Enough"
Back in '07 while eating a regular American Diet my 30 day moving average blood sugar was in the 150s. My doctor wanted me to start on the diabetes drugs (You know they let you take those drugs for life)
I declined and went onto a strict vegan diet. It was a little tough since I love cheese but by 1-1-008 my 30 day average was down to 128.2 which is still considered diabetic.
Today (day 41 on the MP) my 30 day average is 99.3 (below 100 is considered normal) and back to the normal D avoiding diet which is much more painless than the vegan.
I am taking other drugs (generally assumed for life) for Coronary Artery Disease, High Blood Pressure, and GERD. I have already stopped the Zocor. At over a c note per month, the money saved is just about paying for the MP drugs.
The next drug to go will be the Omeprozole. That one costs 89 bucks per month and its usefullness is easy to tell. You stop the drug and see if you get heartburn. Easy.
Next will be the Lisinopril which only costs 4 bucks per month at walmart. and then the Metaprolol which is another 4 dollar walmart drug.
So here is my quandary........Do I want to go back to all those drugs for life because I am not sure that the MP will cure me?
Or do I fear that after 5 years of MP I may have to revisit the MP meds for a month twice a year if even for life.
It's a fools choice.
Enjoy. ~StoneyhillLast edited on Mon Apr 14th, 2008 10:24 by Foundation Staff
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Aussie Barb
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Posted: Sun Jun 19th, 2005 06:03 |
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(filelink)
A better state of health
By the end of the first 12 months most folks are happy that they are feeling as good as they did before the MP. But it just keeps getting better. Belinda once said that she and her hubby decided that she had her age rolled back 20 years as the majority of the bugs were eliminated. It is not just a simple 'return to health', it is a return to a state of good health we have never known, or certainly one that we can't remember.
So nobody even thinks about stopping abx at that point. As Meg said the other day "she is determined to kill everyone of those little buggers". I don't know any of those who have reached the stage of "cure" that feel otherwise. We have personally experienced that many of the so-called "diseases of the aging" are really bacterial diseases. And that is a very profound observation....
Most folks don't think twice about taking the usual aging medications (thyroid, cardiac meds, statins, NSAIDS, B/P meds, etc) which is for the rest of their lives....
..Trevor..
Palliation versus cure
-One cannot judge the success of any therapy in the treatment of chronic illness by symptomatic improvement over the short term.
Though still symptomatic and some to the extent of impaired functioning, several of my patients have shown markedly reduced PSA, improved ECGs, improved skin, improved skeletal functioning, improved WBCs, reduced CRP and CK etc.
Personally and objectively with my patients, along with this 'suffering', after a period of time, there are objective improvements, either physically or lab wise but not Lyme serological testing (which usually and in my opinion should increase during therapy). ~Greg Blaney, MD
-Our study is showing that the MP reverses all chronic disease and will reverse the diseases (and some processes) of aging. Since Neolithic times, the intraphagocytic metagenomic microbiota has had a hand all phases of life, from conception to death. That will change during this coming century, as a direct result of the cracking of the human genome, and the cracking of thousands of Microbial genomes.
But your body will not be able to shake off this microbiota unless you get down your 25-D levels and start to limit your exposure to the outdoors. You cannot change the way the biology operates. You can over-ride the biology for a period of time, but eventually the chronic processes will catch up with you.
IMO, For at least a couple of years you really need to structure your life with a view towards long-term recovery, and not just short-term enjoyment. I know that the pastimes of the 21st century (eg biking) seem innocuous enough, but mankind is just not getting the life extension it should be getting from the advent of antibiotics, and other advances in medical knowledge. That will change as we start to more fully understand the Human Microbiome.
The next few years will be ones of profound change. The NIH Human Microbiome project estimates that only 10% of the cells in a human body are human cells, and 90% are microbial cells, 25,000 of the genes are human genes, and one million are microbial genes ..Trevor.. Aug 08
Last edited on Sat Aug 23rd, 2008 21:26 by
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Aussie Barb
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Posted: Sat Jul 30th, 2005 11:42 |
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Full remission
The Phase One Guideline states full remission is indicated by:
- resolution of symptoms
- return of function
- absence of immune system reaction to MP meds
- return of the bloodwork inflammatory markers ACE, CRP, Triglycerides, and Alkaline Phosphatase to the low end of normal.
- Increase in % Lymphocytes, back into the normal range.
- The 1,25-D should be between 25 and 35 pg/ml measured over (at least) a 6 month interval.
- Signs of inflammation on CT and MRI Imaging should be resolving.
What tests do I need to monitor my progress on the MP?
"The myopia on observable endpoints is a common problem. Specialists tend to forget that they cannot reliably diagnose the disease with the bloodwork, yet they expect to be able to track its progress with bloodwork "
..Trevor..
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Sun Oct 30th, 2005 05:26 |
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The MP is curative, not palliative
(filelink)
Unfortunately, clinicians fail to realize that short term palliation of symptoms, such as pain, does not necessarily correlate with arresting the progress of the long-term disease.
The MP is a curative therapy, we kill the bacteria underlying the disease process so that the patient is returned to full health. This study is talking about relieving the symptoms so that the patient can lurch from day to day.
..Trevor..
Getting better vs feeling better
You say "I am definitely killing bugs and getting better now," yet you also say you are feeling better.
Since the 'bugs' have parasitised your immune system, it is just not possible for you to be killing them unless you are also losing a lot of white cells to apoptosis. And that will be hurting.
A lot of people have frittered away their lives by convincing themselves that they knew all about these diseases.
Until I, and my "dogma," came along there was nobody who actually recovered. Think about it a little...
..Trevor..
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Posted: Wed Nov 30th, 2005 02:45 |
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(filelink)
Fibrosis
When the immune system fails to deal with a pathogen it encases the diseased (infected) tissue in collagen. Angiotensin II is known to accelerate the deposition of collagen into tissue. This is part of the body's immune response. Long-term deposition of collagen leads to fibrosis (falsely called 'scar' tissue).
Deposition of collagen to encase pathogens which have escaped the immune system is one of the last lines of defense of the body.
Autoimmune
.....'autoimmune damage' does not exist, except in the minds of the scientists who study it. It would take a whole conference on the topic to get beyond that simple statement. You can look at my Bio21 lecture for a slide with a little more background on this issue.
There is currently very little known about fibrosis in Sarcoidosis. Since nobody has been healed of the disease (prior to the MP) the scientists have just been guessing at what causes the fibrotic tissue deposition.
Recovery from fibrosis
Medicine will tell you that fibrotic tissue does not remodel, but that is not what we are seeing.
Fibrosis (collagen) is thought to be permanent, but it isn't. In Rheumatoid Arthritis, collagen, especially when under mechanical stress (as it is in the lungs) will resorb, and potentially release some of the diseased tissue.
"I don't think it will be necessary to stop Benicar in order to get cartilage remodeling. I say that because of lesser remodeling of tendons on arms and legs which is occasionally reported by the cohort. I know that Angiotensin II is thought to be key in deposition of fetal cartilage, abut I am not sure that this function is not supplanted later in life. You are correct in expecting it to be at the 5+ year mark into recovery, however..." ..Trevor..
Fibrosis remodelling occurs as the Vitamin D metabolites normalize, for much the same reason as arthritic joints recover during the several years of phase 3.
We have seen no sign in our cohort that the organs cannot heal to restore full function, even though deposited collagen remains in place. The lungs are really good at healing, even though they may be badly scarred from years of fibrosis.
The issue of fibrosis is complex, and we are learning more all the time. But the conventional view that the body cannot heal because of fibrotic tissue is absolutely incorrect. We have proved that. Beyond that statement, only time will tell.
As the body heals (with the MP) the fibrotic tissue will 'remodel' and be replaced by new healthy tissue. We have no data yet on what happens at this point, as nobody has ever recovered from this disease before the MP, and scar tissue was thought to be permanent. We now know that it isn't, that it remodels, but beyond that is still unchartered territory.
This article says liver fibrosis is reversible in humans.
Everything heals on the MP, but at differing rates. For example, neuropathy is slower to respond, and fibrosis is very slow. But the body has demonstrated that it can eventually recover from just about everything caused by Th1 inflammation.
We are seeing that fibrosis in kidneys, livers, and lungs slowly remodels after the patient has been returned to health. It is part of the gradual recovery which will creep up on you over many years.
Folks recovering on the MP need nothing except their returning health. The angiotensin blockade (Benicar) inhibits the formation of new fibrotic tissue. Eventually, a fully-functioning immune system (without antibiotics) will do the job perfectly well.
Dr. Marshall
Assessing recovery from fibrosis
Even though you may still be feeling terrible, a CT scan might well show that the lymph nodes are steadily shrinking. Granuloma shrink too, but not those which have been calcified or turned fibrotic.
The PFTs usually improve, particularly the DLco, or gas diffusion capability.
The more fibrotic tissue a patient has accumulated, the more sensible it is for that patient to continue with the MP until all signs of the disease have disappeared.
The immune system kills CWD, not the drugs
Immunopathology (Herxheimer reaction) is to be expected and should not be interpreted as a side effect, adverse reaction or intolerance.
We know that when the immune system is effectively fighting infection, the result is cell death. But this is the road to recovery. It is a mistake to focus on the drugs. It is the immune system that is killing the intracellular bacteria.
The aim of the combined essential elements of the MP (avoiding light and vitamin D, using the MP meds etc) is to stimulate/activate the immune system.
The innate immune system can work properly when the VDR is not over-stimulated, and the antibiotics are often not necessary to continue the process. The antibiotics do ensure a more even species-kill, and establish a pattern to the response.
Even in the absence of Benicar (and abx), the immune system will often keep killing the bacteria for months.
See Cell death (apotosis) must precede cessation of fibrosis
Immunupathology resulting from fibrosis remodeling
If you have significant fibrosis there is reason to expect your immune system will have ongoing low-levels of pathogens to deal with for quite some time.
Also, as the immune system becomes more competent again it has the ability to go after species which it could not deal with during earlier phases of your recovery.
As the fibrotic tissue is remodelled (by the body's own processes) there may be times when many encased pathogens are suddenly released.
As a consequence, patients with extensive pulmonary fibrosis may experience sudden bouts of severe pulmonary immunopathology (which may include extreme SOB).
At any stage along the MP the immune system may become particularly active due to remodeling of fibrosis and need more modulating than stimulating.
Regular doses of antibiotics can be modulatory and may actually reduce your immune response. The regular cycles and meds adjustments may help to make the immune response fit into a predictable pattern.
Pnuemothorax
It is the sarcies who seem most at risk of sudden and/or severe immunopathology, with lots of lung fibrosis.
Those who have severe respiratory disease should be encouraged to keep the oxygen concentrator handy for a year or two into phase 3, out of an abundance of caution.
Sarcoidosis patients often have surgery on their lungs. The open lung biopsy, by thoracotomy, is a very invasive procedure that (thankfully) is not used much any longer. But even bronchoscopy can lacerate the lung tissue a little. This damaged tissue may be the source of previously resistant pathogens which cause this sudden severe immune system response.
Sarcoidosis patients who have had a lung biopsy to be particularly careful of leaks in their lungs, which may occur gradually or suddenly, causing large or small pneumothorax. I had 'an adhesion' in 1989, where the bottom of my right lung stuck to my diaphragm, an extremely painful event. This was at the point where tissue had been removed for the thoracotomy biopsy in 1978. This area has been the site of severe immunopathology.
See What should I know about respiratory immunopathology?
Members experiences
E, when we met you were on a very high oxygen flow and I suspect that probably means you may have had some degree of pneumothorax for some time. Especially as you reported that you were able to manage with 2 L/min again yesterday. I suspect that once your lungs are reinflated you are going to have many more 'flashes of improvement' showing just how much disease the MP has chased away.
..Trevor..
Guss Wilkinson (pulmonary sarcoidosis involvement) wrote a good summary of his healing on the MP
`
Last edited on Tue Aug 19th, 2008 00:06 by Foundation Staff
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Posted: Sat Dec 3rd, 2005 18:15 |
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Assessing lung function
Pulmonary fibrosis
"Many in the cohort have extensive pulmonary fibrosis. Some are recovering transplant candidates. You might like to look at my own Xrays, online at http://sarcinfo.com/xrays
The lack of lung function is reversed by several factors as the bacterial load is removed by the MP. First, FEV1 improves, mine by 25%, as the muscle tone returns. Second, and more important, DLco returns to normal as the inflammation leaves the lung tissue.
It is thought that pulmonary fibrosis is somehow irreversible, but we find no evidence of that. As they heal, everybody on the MP has regained lung deficits, and discarded any supplementary oxygen. You won't find them running marathons, but you will find fully functional members of the community.
Bacterial load accumulates with age, but the only safety issues are those related to the normal management of immunopathology, which must be watched with any patient." ..Trevor..
Pulmonary function tests
Pulmonary Function Tests (PFTs) usually do not significantly improved until one year, although some MP members have had improvements before then.
Keep in mind that PFTs are subject to interpretation, because there is variability on the test methodology (effort, etc), and sometimes even in equipment. Therefore, they do not provide objective data.
"It's a little-recognized fact that sarcoidosis can cause PFTs results to indicate obstructive lung disease (sarcoidosis is considered a restrictive lung disease). This is because chest lymph nodes may become so enlarged they compress airways and/or granulomas themselves may obstruct airways. I would say that, by showing an improvement in your obstructions, your lungs are already showing some improvement. It will take months for the other tests, like the DLCO, to improve.
You know you are on the right track because you've taken charge and you are already feeling the results. The prednisone and other drugs you took before were artificially suppressing your immune system, which may have allowed your PFTs to look better than you really were. Now the antibiotics are supporting your immune system to enable it to get rid of what was causing the sarc. The Herx reaction is going to make the PFTs and lung imaging look worse for a while, as your immune system works on the lungs.
12-18 months after beginning MP treatment, expect your doctors to be smiling." ~Belinda Fenter
"You will need more information to comprehend your PFT. For instance, did you have the simple spirometry done in a doctor's office? This usually measures basic air flow: how well the lungs exhale. Sarcoidosis can obstruct the airways when chest inflammation or enlarged lymph nodes impinge airways. Sarcoid can also reduce the lung volume when airways and lungs are filled with fluids from inflammation. Both these can reduce spirometry values.
We generally expect spirometry values to worsen with immunopathology. In a patient with significant lung involvement, spirometry may not improve for a year or more as you work your way through immunopathology." ~Belinda Fenter
-The MP is a healing process. Of course the immunopathology is going to increase interstitial inflammation. You get interstitial inflammation when you kill the bacteria. The DLco is the most sensitive measure of the pulmonary immunopathology. We keep telling folk about that, time and time again. ..Trevor..
Pulmonary imaging
Immunopathology can and probably will make imaging results worse at some point in time if taken at short intervals. Lung imaging might be better after a period of time of using this treatment, but then you might be experiencing immunopathology on the day the imaging is done. The patient and doctor have to look at the big picture to assess how the patient is doing.
Lung imaging is a very limited way of assessing a sarcoidosis patient. It's a systemic disease.
The positive changes on lung x-ray may take more that a couple of years to reveal themselves. Lung x-rays or cat-scans will not cure you, and do give you a dose of radiation each time you are exposed.
Chest xrays do not provide objective data. They are subjectively read.
"Trying to distinguish between inflammation and fibrosis is one of the confounding things about lungs. Our understanding is that it's rather difficult to determine whether opacities on chest x-rays are inflammation versus fibrosis. Actually, more sophisticated thin-sectioned, high-resolution computed tomographic scans (HRCTs) are usually used to try to determine whether it's inflammation or fibrosis, but even then it may be indeterminate. See this recently published article.
If you remember, we do say in our patient recovery DVDs that chest imaging may get worse on the MP but improve later. The reason we can expect chest imaging to worsen is because when the lungs are have an immunopathological reaction, inflammation will be worse - and that will likely be evident on any imaging.
Something to think about: Some people put a bit of planning into preparing for their chest imaging so they get the pictures done on one of their good days. While on the MP, this is possible by adjusting dosing or making clinic appointments to avoid the worst immunopathology days, since immunopathology comes in cycles related to antibiotic dosing.
It looks like you were in the middle of your antibiotic dosing cycle when your chest x-rays were made. Most people can expect more immunopathology mid-cycle of Phase Three. If you look back in your posts, you had also skipped around on your every-other-day dosing of the short-term antibiotics. That might have affected your immunopathology level, and thus how your lungs looked.
I know fibrosis is a scary thought, but many patients on this forum have fibrosis and are doing well. It is possible to function quite well, even with pulmonary fibrosis - after you kick the disease. I am one proving this is true; I am in better physical shape than I was a decade or two ago. But it took a couple of years on the for me to feel like my lungs and physical abilities (stamina, strength) were really improving. Up to that time, my symptom resolution revolved around getting rid of intense pain, getting rid of insomnia, cognitive deficits, digestive problems, etc.)
I suggest the bottom line is this: Whether your lungs have more inflammation or fibrosis, how much time and money to you want to expend toward tracking that down, and how does that change your treatment options." ~Belinda
Radiation exposure
"Your concern about radiation is valid. I am currently in contact with a group of nuclear power station workers who have a very high incidence of sarcoidosis. Given that energy is a key ingredient in changing 7-dehydrocholesterol to pre-Vitamin-D I would be very wary giving any sarcoidosis patients even the amount of ionizing radiation normally acceptable to the healthy population.
In this case it would seem that the CT scan results would not change Doc's therapeutic decisions, and therefore am puzzled why Doc would insist on them. ..Trevor..
The New England Journal of Medicine (Nov.29, 2007) reported the average American's radiation exposure has doubled since 1980, largely because of the booming use of CT scans. A patient undergoing an abdominal CT scan receives over 50 times more radiation than in a standard X-ray. A person who receives two scans is bathed in as much radiation as if he stood two miles from ground zero at Hiroshima.
For a more readable synopsis and comment, see http://www.msnbc.msn.com/id/22010076/
Part of the research report says:
Although most of the quantitative estimates of the radiation-induced cancer risk are derived from analyses of atomic-bomb survivors, there are other supporting studies, including a recent large-scale study of 400,000 radiation workers in the nuclear industry who were exposed to an average dose of approximately 20 mSv (a typical organ dose from a single CT scan for an adult). A significant association was reported between the radiation dose and mortality from cancer in this cohort (with a significant increase in the risk of cancer among workers who received doses between 5 and 150 mSv); the risks were quantitatively consistent with those reported for atomic-bomb survivors.
Errors in imaging interpretation are common
Ehsan Samei of the Advanced Imaging Laboratories at Duke University Medical Center recently summarized results from a variety of radiological procedures: "Currently, the average diagnostic error in interpreting medical images is in the twenty percent to thirty percent range. These errors, being either of the false-negative of false-positive type, have significant impact on patient care." How Doctors Think by Jerome Groopman, MD.
Micromanaging the healing process
" .... the biggest issue, IMO, is trying to micromanage the healing process. If you are typical of the folks who come looking to the MP for relief, then you have a body which is very ill. It is systemically ill, there will be no part of it that has totally escaped damage. That's the problem with micromanaging - when you get too much data it becomes not easy to analyse what is happening. Healing takes place on a yearly scale, and testing should follow it in the same timeframe, IMO." ..Trevor..
See Diagnostic imaging
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Posted: Fri Dec 30th, 2005 05:53 |
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(filelink)
Is the Marshall Protocol the fountain of youth?
"The first contact I had from a CFS physician was after whispered talk about the MP at which was going around a conference on 'diseases of the aging' in 2003.
It is still an imponderable to try and figure out whether killing the chronic bacterial load will extend longevity. A recent study by Dr Alvin Brown, et al, found that about 60% of its 'controls' had CWD bacteria in their blood, det! ected using Lida Mattman's methods. Their reaction was to recoil in horror, and assume that what was being detected was not bacteria, but something else (unknown). So the CWD infections do seem to be pretty widespread in the 'healthy' population. Do they account for why some folks die at 65 and some die at 95?
I don't know yet. But I am certain that atherosclerosis and stroke are Th1 diseases, and when these have gone away it certainly reduces premature death (under 65). A physician in Germany is treating his Dementia patients (including a few with ALS and Alzheimers) with variations of the MP (the straight MP is not much use in folks who are incapable of adjusting the dose). He reports success.
So we have a work in progress. It will be interesting to see what the future brings.
..Trevor..
Undiagnosed infection causes deterioration
Remember, we are constantly interacting with pathogens and will at times have difficulty in deterring them. Ultimately, as our bodies naturally deteriorate, they will win out. C'est la vie.
But, what we are dealing with is the premature deterioration of health by undiagnosed infections because of the scientific error in ignoring that bacteria can cause 'non-infectious disease' and therefore, little research has been done , leading to unnecessary suffering and death.
So we are on a great adventure together andhopefully we will assist humankind in a better un derstanding of health and disease, and that we will live longer, live happier and die more peacefully.
~Greg Blaney, MD
Diseases of aging
The MP will certainly keep you away from "The Diseases of Aging," which are primarily Th1 related. Other effects the bacteria may have in the aging process still have to be defined.
You may be interested to know there is a branch of Medicine that is looking into the ties between aging and inflammation. Here is a letter I wrote recently to the editor of the "Immunity and Aging" journal
Marshall T: We have a lot to learn about 'diseases of the aging'. Correspondence to Giunta S: Is inflammaging an auto[innate]immunity subclinical syndrome? Immun Ageing. 2006 Dec 16;3(1):12.
Do you feel that the MP is able to affect the aging process?
Yes absolutely. My own health has recovered to a point where I see signs of age reversal. My eyesight has improved, my hearing has improved, and my cognitive function is better than ever. After I exercise I feel invigorated – the way I used to feel when I was young, rather than drained. There is no doubt that the MP can have a significant effect on a patient’s longevity. Experts in the field of immunology are increasingly pointing to the fact that the aging of the immune system is a main factor influencing longevity. As people grow older, their immune systems are forced to deal with higher bacterial loads, which in turns means they have to manage a greater inflammatory response. The MP downregulates this inflammatory response, restoring the agility of the immune system, which significantly affects the aging process.
That means that I’m going to be greedy about staying on antibiotics until I’ve reaped every possible benefit of the MP. Come this Christmas I will have been on the MP for three years. All my symptoms are gone and I feel completely healthy. Except for one small issue. I still have occasional tinnitus. Some days it’s completely gone, but other days it’s still at about 20% of where it used to be. I’m staying on antibiotics until this issue is completely gone. I can see myself staying on antibiotics for at least another six months, maybe even a year. I have no concerns about staying on them for a longer period of time. Some of the symptoms that I suffered from before the MP started when I was only 5-6 years old, so I had been sick for over 50 years. I have no intellectual concerns about spending 4-5 years on medications in order to reverse disease symptoms that had manifested over such a longer period of time, especially since I know how slowly L-form bacteria grow and how they can become dormant for periods of time. I also feel there are simply no adverse reactions or negative side effects that I need to worry about while taking the MP medications. It’s an extremely safe approach. ~Greg Blaney, MD (Oct 31, 2007)
When will you die?
Dec 07 The question is will you be dying at age 20,40,60,80,100,120? And why will death become inevitable?
The fascinating thing about the MP is that our data shows we are solving the diseases of aging, one by one. Since the Microbiota which causes chronic disease is apparently the same one causing the diseases of the aging, what processes will lead to the imminent inevitability of death?
Stem cells? Well, Emil Wirostko found the L-form Microbiota in stem cells, and it looks as though the reason the body loses its ability to heal (as it ages) is that its stem cells grow weak. But they also grow weak in disease. Perhaps the mechanism in both cases is Th1 in origin?
Lots of questions occupying my mind right now. Indeed, there is a whole medical journal dedicated to Inflammation and its importance in Aging - here is a letter to the editor I wrote them, some time ago...
http://www.immunityageing.com/content/3/1/12/comments
..Trevor..
See Aging and the resurrection of the immune system
Last edited on Tue Dec 18th, 2007 00:18 by Foundation Staff
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Posted: Sat Mar 18th, 2006 03:59 |
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Does previous use of steroids hinder recovery? filelink
There are two issues here. Firstly, fibrosis (which is not stopped by steroids) encases the pathogens in collagen, from whence they will (eventually) begin to break free. Second, the long-term use of steroids does promote parasitization of the more dense organs, rather than just soft-tissue in the lungs.
None of these are make-or-break issues. I myself had 2-3 years of prednisone, in 1978 and 1990, and although the 1990 episode came close to killing me (IMO), my recovery has not apparently been set back by these two previous steroid exposures.
..Trevor..
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Posted: Wed Jul 12th, 2006 11:30 |
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Tissue regeneration
Dr Marshall wrote:
I can assure you that the brain regenerates, that most systemic soft tissue regenerates, and the nerves regenerate, with only fibrotic damage being slow to change. My eyeglass prescription has remained the same, but the decrease in light sensitivity would tend to imply that the eye retinal tissue is regenerating, too.
Eventually the immune system will get rid of all pathogens, and most immunoglobulin activity will cease. That will take a few years, though. They say it takes 5 years to clear TB out of a body, which is a similar persistent intracellular pathogen.
Will defective genes return to normal?
"Some will go back quickly, some will take a while for the body's DNA repair mechanisms to work. All the expression changes occur pretty rapidly, it is only the mutations that will repair slowly.
Some mutations may not repair at all, but this is unlikely."
..Trevor..Last edited on Wed Jul 18th, 2007 03:52 by
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Barb: Dx Inflammatory Disease Endocrine Imbalance 2003| Depression| 24+ years not Dx| MP Aug04| ABC of MP| MP Search|
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Posted: Fri Sep 15th, 2006 21:55 |
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(filelink)
Do MP graduates feel "high energy" all the time? Or most all the time?
Meg works a job, works long hours on and behind the scenes of this Board and has a Family. Belinda and Dr Marshall both do enormous amounts behind the scenes and have Families as well..
Dr Marshall wrote: Watch the DVD of "What is Cure?" panel from Chicago. Listen to Meg explain how the neuropathy which was limiting movement in her feet disappeared. Listen to Lowelle saying how her spine is now functioning again, and to Ms Dale explain how her neuropathy disappeared, and she got out of her wheelchair.
There are some of their stories also in MARSHALL PROTOCOL SUCCESS STORIES Members Testimonies of their improving health
LINKS to Member progress and improving Health is a Resource of individual links to Members recovery experiences
See link to: Carole: My MP Story
The Many Faces of Recovery pics of Ms Dale, Meg, Belinda, Lowelle
Healing of Muscle wasting/ Muscle Loss atrophy
Ms Dale re her MP Journey
Lowelle Messner: I would not be doing this (horseback riding) without the MP.
BettyC 81 years of age
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Yes, the energy level does get better, but not until after significant time devoted to recovery. It took me 18 months before I realized I had *hope* of feeling like I had reliable energy on a regular basis.
There's nothing for me to compare with the energy I have now -- unless I go back *at least* 20 years, probably longer. While I was active back then, I don't think I had this much energy. I should mention that I walk six miles daily and work out with hand weights for exercise.
In addition to what I do for the foundation and taking care of my family, in the past couple of weeks, I've been repairing/renovating a house my parents own, and I spent at least 6-7 hours a day in 90-something degree heat, doing manual labor such as using a chain saw to cut tree limbs and tree stumps, doing carpentry work like hammering and chiseling wood and heavy-duty cleaning (see footnote). This is so far beyond where I was 3+ years ago that it's hard to compare or discuss, since back then I spent so much time resting or lying around because of fatigue and pain. I was also using supplemental oxygen, which is now only a notation for my medical history. I had trouble grasping with my right hand and I had parasthesia, lack of normal sensation, on most of my right side.
I think you might be overlooking the fact that you are doing the MP while still working. While the MP has been carefully designed so people will have manageable Herxing, fulfilling the daily requirements of work, while dealing with Herx is an accomplishment you should take pride in, day by day.
Remember that fatigue is a *disease symptom* as well as a Herx symptom. Fatigue was one of my longest-lasting disease symptoms. Once it began to lift (which as I said, took about 18 months on the treatment), it still took another year to have the energy I **expected to have**. Now, there just aren't enough hours in the day.
I do empathize with you and I remember what it was like at that stage. I can only tell you that every single day, I marvel at how wonderful it is to be able to rely on my body's energy and strength, and on my mind as well! I never thought I would be at this point.. because I would have been happy and grateful settling for much less of a recovery. ~Belinda
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The mind is a strange thing - it seems to be very good at supressing unpleasant memories. I have to concentrate really hard to recall how I felt a year back.
These days, when I have a really bad day with fatigue etc, I would have considered those days as really really good days a year back.
I consider myself to have a greater feeling of well-being than most of my friends and family who are not ill. ~Gus
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The NHLBI has never had unleashed on it as much emotional (and actual) energy as the Autoimmunity Research Foundation has focused on it during these last two years. I suggest you ask Dr Kiley how much physical and mental energy Meg, Belinda and I now have available to us See posts here.. and pics here and pdf press release pics here.
..Trevor..
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Three years ago, I could hardly make it till noon at work and longed to take a nap. Luckily I worked part-time so I usually napped all afternoon and then in the evening too.
Now, as Belinda put it, there aren't enough hours in my day. I no longer think about retiring (I'm 59) but expect to continue working for a long time because I love my job.
I sometimes nap in the afternoon, but only because I stay up very late to communicate with the other moderators who live on the West Coast and Australia. I get by with 6-7 hours of sleep total and feel energetic when I'm awake. Like Gus, I also have a new sense of well-being.
On a recent 10 hour drive (one way) to Michigan to see our kids and grandson, I didn't fall asleep in the car, which amazed me. I used to nod off as soon as we were out of town! I had energy to enjoy our visit and wasn't wiped out by the trip when we got home.
Don't despair because you are progressing as we would expect. The rewards will be yours if you persist. ~Meg
Last edited on Fri Jul 27th, 2007 23:20 by Foundation Staff
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