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Aussie Barb
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Posted: Tue Nov 30th, 2004 23:35 |
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Introduction
This thread contains suggestions for persuading your doctor to study and implement the Marshall Protocol. The suggestions in this thread will provide you with many helpful hints to make this, occasionally formidable, task a bit easier.
These FAQs will help you understand why it might be difficult to find a supportive doctor:
Why won't my doctor consider the Marshall Protocol?
Why isn't the MP being used by more doctors?
Why is the Marshall Protocol not being discussed & used by doctors around the world?
These FAQS and tutorials will help you answer most of your doctors initial questions:
Phase 1 of the Marshall Protocol (How to Start the Marshall Protocol) Phase 2 and 3 are available for your doctor to read in the health care professionals forum.
The Marshall Protocol -- simple explanations (For patients and physicians)
My doctor wants to read about the MP in published medical journals. Where can I find them?
The history of the Marshall Protocol (includes Dr. Marshall's bio and credentials)
Benicar Safety Studies
Is the MP an Applicable Treatment for my Disease?
See also:
Folder of information for your doctor
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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: Fri Mar 25th, 2005 20:39 |
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If you need to find a new doctor
Many of us have been to numerous doctors in an effort to diagnose our illness and/or get well. Before you look for a doctor who is familiar with the Marshall Protocol, please give your current doctor/s the opportunity to learn and help you by explaining the Marshall Protocol to them.
If your efforts to persuade your current doctor/s fail and you need to find a new doctor, you may post a request for our list of doctors in this thread POST REQUESTS FOR DOCTORS HERE.
Other sources for names of health care providers who may be willing to prescribe the MP are:
1) - American Academy of Environmental Medicine - physicians who practice using alternative therapies. http://www.aaem.com/ Their address is 7701 E. Kellogg, Suite 625, Wichita, KS 67207 phone 316-684-5500.
2)The Australian College of Nutritional and Environmental Medicine has links to doctors all over the world including the USA:
ACNEM ... Referrals
3) - American College of Advancement in Medicine (ACAM)- Send a self addressed, business size envelope with 55 cents postage to American College. P. O. Box 3427, Laguna Hills, CA 92654 and ask for referral packet; call 1-800-532-3688 or visit their web site http://www.acam.org/ where you can search for a doctor in your country and area. ACAM doctors are often happy to prescribe antibiotics for RA.
DoctorFinder (click here) The AMA DoctorFinder provides professional information about virtually every licensed physician in the United States and its possessions — including more than 690,000 doctors of medicine and doctors of osteopathy or osteopathic medicine.
4) - Physicians' names supplied by folks already on the MP. You can search our study site by geographical location and contact other members in your area via private message or email to ask about their MP doctor. How to Contact Members in your local area
ATTENTION EVERYONE: If you have not listed your location in your member profile, please consider doing so. Many members have expressed interest in contacting others in their local areas. See YOUR PROFILE How to find other members in your area.
5) - The Arthritis Trust website - who also have a list of doctors. http://www.arthritistrust.org/Physicians/ArthritisPhysicians.pdf
6) Local pharmacists or your local health food store personnel might be a source of information about open-minded doctors who are willing to consider the Marshall Protocol.
7) Doctors who are just starting a practice are less likely to refuse patient requests for the Marshall Protocol.
8) Nurse Practitioners and Physicians Assistants can order the Marshall Protocol medications and supervise your treatment.
To lessen the chance of a wasted office visit, it is suggested that you call the doctor's office first to ask about their use of or their potential willingness to use the Marshall Protocol. It is a good idea to also inquire about which health plans they accept including Medicare and Medicaid. and any other fees.
Please be aware that the Marshall Protocol does not require any more tests than are listed in the MP guideline and most supplements are contraindicated. If a doctor insists on additional tests and supplements, they are not following the Marshall Protocol.
Specialists vs Generalists
Doctors who are specialists consider themselves experts. They are often reluctant to consider a novel treatment approach that is introduced to them by their patient. If your specialist is not agreeable, be sure to ask your primary care provider (PCP) too. These generalists tend to be less guarded and more open to learning.
Some feel a doctor of osteopathy (DO) might be more open-minded than an MD. A doctor who has studied internal medicine, or one who also has a Ph.D in one of the scienced might be more receptive.
Although your PCP may not feel as qualified as a specialist, the Marshall Protocol is so simple that it can even be ordered by a physician's assistant (PA) or nurse practitioner (NP).
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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: Tue Mar 29th, 2005 03:10 |
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How to approach your doctor about the MP
Here is what I did, and my doctor agreed to do the MP with me.
1. I printed out the Phase I Marshall Protocol from the Marshall Protocol website.
2. I printed out the information on the testing required and the pages from Quest Labs for the 25-D and 1,25-D tests.
3. I wrote a letter addressing each aspect of the MP and how it would relate to me, numbering each aspect separately (it was only about 2 pages long). I included in my letter Dr. Marshall's email address and the telephone number and said that Dr. Marshall would be happy to talk to my doctor. I mailed all this to my doctor two or three weeks before my appointment.
When I went to my doctor, I took notes with me, most importantly, I listed for him the lab tests needed: For me, I had decided 25-D; 1,25-D and thyroid panel (due to my thyroid problems). Then, I listed the prescriptions I would need from him: (1) Benicar, 40 mg., #120. Take as Directed. No substitutions. and (2) minocycline, 50 mg., #90. Take as directed.
In addition, I wrote up my own half-page summary of the MP. (My doctor really liked that.)
What I did was to make it as easy as I possibly could for my doctor to say yes rather than no. When you can make it easier for someone to say yes than for him/her to say no, the person usually does what you want (yes, even doctors!). So, my suggestion would be to print out the general information, include a very short summary, and address any concerns which apply specifically to you, as opposed to other people on the MP.
I mailed most of the information (a big, heavy envelope) to my doctor three weeks before I saw him, but I also brought him my very short summary, the list of lab tests (which he copied onto the order form) and the list of prescriptions and exactly how to write them (he copied what I had written).
I would add one other suggestion, and that would be to approach your doctor in a manner which suggests that you are expecting him/her to agree to do this. I told my doctor that I really wanted to do this, and that it had given me more hope than anything had in years. I do think this helped to convince him. ~Patricia
I requested a list of Doctors and when I noticed one that was using the protocol already I wrote a letter to them giving them my medical history and basically explaining that I would benefit from being treated with the MP and since they are already using the protocol to treat Lyme Disease would they please treat me for Sarc. And now I'm being treated for Sarc with the Marshall Protocol. I know that medicine is funny but don't be discouraged. If the physician is using the Marshall Protocol for CFS or Lyme then there really is no reason why he couldn't treat a Sarc patient. ~wytnez
Facts first
Provided (Dr) with Pubmed literature associated with hypercalceamia due to sarcoidosis. He can't argue with facts and in a way I wish I had approached him with the facts first and the protocol later. If anyone has an 'iffy' Doctor I'd advise them to approach it that way. ~rainbowcatcher
Preparation is key
I love it when a patient comes to me with a fully researched and logical presentation about a new course they are interested in. If it makes sense and I do not think it is dangerous, I usually go along with it. Do your homework, practice your presentation on friends, bring in papers to read (we love those, gives us the safety net of published articles) and give it your best shot. If your doc is not willing, try again next visit. If that doesn't work, find another doc. ~madwolf
Contact support groups to ask for doctor information
I've come up with a method that might help patients living in or near metropolitan areas find a doc willing to do MP. That is: find out if there are any CFS, CFIDS, Fibro support groups in your city. Go to a meeting, or call the group leader and ask for the names of doctors used by the group members. I did this and got a name of an MD who sounds like a good possibility.
Email leading specialists in your disease to garner interest in the MP
The trick for me has been to find the email-adresses of the leading scientists regarding CRPS/RSD in the Netherlands and email them directly. I didn't mention the word Marshall once, but just presented the theory: the problem in detailed steps and then the solution in equally detailed steps. I made sure I used a lot of technical terms to bypass secretaries and the like.
I now have confirmation that the top 4 in the Netherlands are reading the theory (ie The Marshall Protocol of course :-))) ) and one has responded that he and one other of the 4 leaders in the field are VERY interested.
I did not use names to avoid that they have on open mind... and enough technicalities to make sure they would take it VERY serious. Furthermore I provided a link to a research-paper on pubmed, where they have found that the inmmune-system is involved in the disease. The fun is, that this research had been done by one of those 4 whom I contacted :-)))
I have tried to find links of other diseases to the immunesystem: ALS, SMA, Duchenne all have studies done that found elevated levels of TNF-alpha and other cytokines in tissues. A bonus to this all is that these guys I contacted are all in the field of pain (Anesthesiology?) and treat patients with all sorts of chronic diseases. Ranging from ALS to FM to Sarc to RA to RSD/CRPS.
Remember, do not use names, first get the doc interested, so he can't back off. Just my way of sneaking through red tape, politics and minds not open (prejudicial?? don't know the word) ~Frans
See:
Letter of introduction for your MP supportive doctor
Folder of MP information for your doctor
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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: Wed Apr 13th, 2005 02:01 |
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Ask to use the MP as a therapeutic probe
Your Doctor will be familiar with the use of a therapeutic probe to make a diagnosis or determine if a treatment is effective.
If your doctor is not sure the Marshall Protocol is the right treatment, ask that you be allowed to do a therapeutic probe with the MP.
You may also report your response to avoidance of sun exposure and ingestion of Vitamin D as evidence that a full therapeutic probe is warranted.
For details see What is a therapeutic probe?
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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: Thu Apr 21st, 2005 22:55 |
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When a doctor is skeptical of information from the Internet
It's a changing world. Physicians must change and keep up with the new technology, just like everyone else. The US National Institutes of Health is about to implement a new policy requiring public access to published reports resulting from NIH-funded research. That means this information will be available on the internet, along with all the other databases publicly available through the National Library of Medicine. ~Belinda
I heard a startling statistic today, at the NIH COPR meeting with Dr Zerhouni (Director, NIH). Apparently 57% of people with an Internet computer have used it to find information to ask their Doctors questions about their health. So don't let your Doctors tell you they aren't interested in what is published on the Internet - they are.
The "only on the Internet" allegation is a tough one for us to understand. But these folks don't understand how to use the Internet to get information. They have very small, closed, minds. That is why we publish in conventional, as well as these unconventional, forums. And why it is important to take a Physician some photocopies of our papers in the printed journals, and conferences, and not just printouts of web pages.
..Trevor..
Doctors who don't take insurance
Some very good physicians no longer file insurance for patients because they would rather spend their time and energy treating patients than dealing with the run-around, second-guessing, and delays associated with insurance reimbursements. Check the details of your own medical coverage benefits; some plans will allow some reduced coverage if you see a physician not on the plan (who doesn't take insurance). In that case, you would pay up-front, out of your pocket, file your receipts and wait for reimbursement. Just another option to consider.
When doc discounts a patient's symptoms
If your physician is not believing your reports of how sun/lights and vitamin D affect you that indicates s/he is uncomfortable with his/her understanding of your disease and wants to pass you off to someone who hopefully knows more. Trust your own instincts and find someone who will respect your feedback about your symptoms and experiences rather trying to make you fit an outdated description they may have found in a textbook. ~Belinda
Doctors who refuse to support the MP do not change their minds quickly. It is better to move on to find a supportive doctor as soon as possible. With your Health being top priority, and having tried most other treatments, you should be able to find a doctor who will say "why not?" when you explain the MP. ~jrfoutin
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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: Tue May 10th, 2005 03:13 |
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Letter explaining the MP to a physician
Below is a letter written by a CFS member to explain the Marshall Protocol to his doctor. It could serve as an introduction to garner interest prior to presenting Dr. Marshall's more complex papers and presentations.
Dear Doctor ...,
As you know, for the past .. years I have been suffering from a constellation of disabling symptoms which have been diagnosed as Chronic Fatigue Syndrome.
This diagnosis presents vexing problems for patient and physician alike. There is no consensus among medical professionals as to the validity of CFS as a diagnosis. Among those who accept it as valid, there is no consensus on the cause of the syndrome and no standardized approach to treating it.
New research by Trevor Marshall, PhD, is now providing patients and their doctors with a way to break through this impasse. Dr. Marshall has found new evidence that CFS patients suffer an underlying condition also present in Sarcoidosis, Chronic Lyme Disease, Lupus, Rheumatoid Arthritis, Crohn’s, and other so called 'auto-immune' disorders.
The “common denominator” identified by Dr. Marshall is the presence of tiny, Cell Wall Deficient bacterial pathogens living cozily and replicating inside the very white blood cells that are supposed to eradicate them. Safely sequestered in the body’s immune cells, these minute pathogens trigger an inflammatory Th1 immune response that is self-perpetuating and accounts for both the symptoms patients suffer and the chronic, cyclical nature of their complaints.
The initial discovery of these intracellular pathogens in the macrophages of Sarcoidosis patients was made possible by advanced microscopy techniques. Fortunately, Dr. Marshall’s research has yielded a more practical diagnostic tool for clinical use. White blood cells parasitized by these tiny microbes assume a novel function: they energetically convert the precursor vitamin, 25-D, into the active hormone 1,25-D, at levels well in excess of the body’s requirements.
In healthy subjects, this conversion process is confined to the kidneys and regulated to maintain levels consistent with the body’s needs. Elevated levels of 1,25-D, revealed through a simple blood test, thus provide positive confirmation of Th1 inflammation.
Excessive levels of 1,25-D have direct, negative impacts on patient health and well being. They also make it easier for the bacteria to move in and out of cells, allowing more immune cells to be parasitized.
Without medical intervention, the process will tend to be self-perpetuating. While symptom severity may cycle in sync with the half-life of 1,25-D in the body and other related processes, over time the inflammatory response triggered by these intracellular pathogens is likely to spread, aggravating existing symptoms and giving rise to new ones.
On the basis of these findings, a treatment was devised which has now become known as the “Marshall Protocol,” or “MP” for short. The Marshall Protocol begins with blood testing to confirm Th1 disease.
The treatment itself has three basic elements:
- To reduce levels of 1,25-D; by reducing to a minimum, sunlight on the skin, bright light in the eyes, and food/supplement sources of the precursor 25-D.
- Benicar, an Angiotensin II Receptor Blocker (ARB), is used at greater than hypotensive doses to interrupt the inflammatory cascade that the pathogens use to evade immune system detection.
- Low doses of carefully selected antibiotics are used to assist the immune system in eliminating the pathogens, as the first two elements flush them out and render them vulnerable.
The first group of patients to be successfully treated with the Marshall Protocol were diagnosed with sarcoidosis. This illness has until now had no known cure. Patients had been conventionally treated with corticosteroids and other immunosuppressive drugs, with predictably harmful effects.
More recently, antibiotic regimens had been used to greater benefit, but symptom remission was partial and short-lived, once the drugs were discontinued. After completing the Marshall Protocol, however, sarcoidosis patients for the first time obtained full symptomatic remission, which persisted once the course of treatment was complete.
In 2004, a group of patients diagnosed with CFS have been tested for Th1 disease using blood levels of 1,25-D. Out of more than 50 patients tested, all but 2 have had unambiguously elevated 1,25-D levels. On the strength of these results, the CFS patients began active treatment.
The blood test results are already powerful confirmation that CFS patients do indeed have the same underlying condition that causes sarcoidosis. Like sarcoidosis patients, many have tried antibiotic regimens in the past and experienced temporary symptomatic relief. What is particularly striking is the impact that much lower doses of antibiotics are having on these patients, when used in tandem with Benicar and the lifestyle changes the Marshall Protocol employs. Patients who barely responded to heavy doses of antibiotics in the past are having powerful immune system responses to as little as 25 mg of Minocycline, pulsed every other day.
The Marshall Protocol typically requires 18 months to 3 years to produce stable symptom remission. Many CFS patients are now reporting significant symptom relief. The close similarity between their experience and that of the earlier group with sarcoidosis, combined with their consistently elevated baseline 1,25-D levels, strongly suggests that these patients too will emerge from the Marshall Protocol with symptoms in remission and lost function regained.
The same blood work confirmation and strong initial response has been demonstrated by many Marshall Protocol patients diagnosed with Lyme, rheumatoid arthritis, fibromyalgia, and other 'auto-immune' conditions.
I am confident that if you look into this treatment protocol, and the breakthrough understanding of a whole group of chronic illnesses on which it is based, you will come away as impressed as I am by the hope it offers millions of chronically ill patients.
I want to begin this treatment, and am prepared to assume full responsibility for correct adherance and such unanticipated problems as may arise in its course.
Please do not mistake my enthusiasm for desperation. I believe this treatment will work, but I am also convinced that it is safe, far more so than permitting my illness to progress unimpeded while waiting for a consensus that may be years or decades away.
You can access a wealth of information about this protocol and the science behind it on a special study site created for that purpose at http://www.marshallprotocol.info. The site has a special section for health care professionals only where you can pose questions or concerns to Dr. Marshall for comment.
As an essential, and risk-free, first step, I would ask that you order the recommended lab work. Once we know my levels of 25-D and 1,25-D, those results can be posted on the study site for an expert analysis regarding my prospects for recovery on the Marshall Protocol. At a minimum, I would ask that you take advantage of the generosity of the study site research team on my behalf and allow your treatment of me to benefit from their knowledge and familiarity with hundreds and hundreds of patients whose illnesses closely resemble my own.
I look forward to discussing this with you in person at our next appointment.
Sincerely,
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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: Fri Jun 3rd, 2005 20:54 |
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Your doctor may call Dr Marshall anytime to discuss your treatment
"Make sure you keep communicating everything with Doc, and make sure Doc knows s/he can call me if s/he wants to discuss anything.
It will take a while for everybody to fully realize that the MP is a finely honed entity, that folks with Th1 disease are seriously ill, and that one can't just pick and choose which "bits" one wants to implement."
Dr. Marshall's contact information is on all his published papers, but you can understand that he would not *initiate* a conversation with your personal treating physician. That is not considered correct medical etiquette.
In addition, you can remind any health care provider that they are welcome to join the exclusive health professionals forum where they can ask privately questions about the treatment and its implementation.
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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: Thu Jul 14th, 2005 15:10 |
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link
Doctors are historically resistant to change
When Louis Pasteur, a non-medical doctor, showed the "learned doctors" of the day that those swimming, very little creatures that they were looking at under his "microscope" lens were indeed the cause of the rabies, and other bad things, they could not, would not, believe him. They continued to insist that the illness(es) was caused by the "ethers" or bad airs that the person came into contact with.
When Ignaz Philipp Semmelweis deduced that it was something that was being transmitted by the "learned doctors" of the day to the child-bearing mothers in their examinations that killed them, and figured out the pathogenesis and protocol for stopping the trouble, without the help of a microscope, the "learned doctor" colleagues resisted with vehemence.
And in more recent time, when Barry Marshall showed that it was H.pylori bacteria that were causing stomach ulcers, his "learned doctor" colleagues would not believe him also, for about ten years or so.
Please ask your Professor which side would he would prefer to be on... the "learned doctor" side, or, the learning-doctor side. A true Professor does not stop learning! I understand that that is the criteria for being awarded the Doctorate degree.
A mind is like a parachute. It works when fully open! ~GeorgeRollaMO
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Aussie Barb
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Posted: Thu Sep 1st, 2005 20:04 |
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(filelink)
Dr Trevor Marshall wrote Here:
I am sorry that so much pressure is being thrown on your shoulders, and I am writing to apologize for us not being able to help very much.
Truth is, your physician(s) are licensed to be the final arbiters of your health care. They are presumed to be in the best position to evaluate your overall health, and we cannot (by law) second-guess them.
Unfortunately, especially when you are dealing with specialists, they may be focusing only on a very small part of the whole picture, and ignoring issues which they don't fully comprehend.
At the recent Cleveland Conference a leading pulmonologist called us a "pain in the rear" and there are others who would prefer to see the Cure disappear, and allow them to resume 'business as usual.'
Consequently a lot of responsibility is thrown back onto the shoulders of patients, onto those least able to handle the pressure.
We will do the best we can to help you understand the issues, but please understand that none of us can 'second-guess' the decision of your Doctor(s). Only the patient has the right to do that.
Sincerely
Trevor
We are all rooting for you .....
I wanted to make the constraints we are operating under quite clear, so that you understand why we (generally) do not publicly criticize Doctors, or their opinions.
Why won’t my doctor consider the Marshall Protocol?
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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: Fri Sep 16th, 2005 11:54 |
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(filelink)
Members' experiences
-When I found you guys a couple of years ago and had gone to the HMO doc first, and he was leery of doing anything, so I went to my OB and his comment was "For crying out loud, it is just an antibiotic, what is that doctor's problem? Tell me what you need. ~ESmith659
-NEVER GIVE UP, NEVER SURRENDER! This is YOUR life that's at stake, not your docs. Find someone who respects you! ~Jillian
-I was sooo nervous, and excited at the same time. I was worried that She wouldn't want to even consider the protocol. It was a very stressful visit. Not because of the Dr, but because of me.
I was able to fumble through the articulation of the basics of the protocol, what I wanted, and some of the hurdles we'd face. She was very patient with me, kind, and visited with me for nearly 45 minutes! She said she was very interested in the protocol and had read my "package" of info that I had put together and asked me several good questions. I was straight up with her and didn't try to gloss over anything. I told her about the blood test requirements and even though they have a lab on site, I didn't know if they knew how to handle and process the blood this way. She recommended waiting on the test till she researched some more.
The result is that she wants to research this further and will call me in for another apt. She was very positive and upbeat. I tried to be upbeat too, but I was a mess. I know that she is going to put me on this but she is very concerned about the off label perscription of Benicar. I did tell her to contact Dr. Marshall and that he was available to answer any questions. She seemed to consider that. I hope she calls. ~Bookdad
-Yes, my MD's biggest worry seemed to be the use of a blood pressure medication for anything else; that my BP would become a problem. He checks it at every visit and seems pleasantly surprised to find it stabilised and not causing any illness of its own (only annoying side-effects like lightheadedness and sleepiness.)
I think doctors are quite harried and dependent on drug company reps to tell them what a drug is good for, so why not take this opportunity to educate them in the alternative uses/functions of both the ARB and the antibiotics?
It's a matter of semantics. If you sound like you are apologising for using a drug in an unconventional manner, merely playing around with some side-effect of it's use, that sounds too experimental. You need to word your presentation in an authoritative way, (on a poster or anywhere Doctors read it,) so that they perceive they are hearing about an alternative medical use; hence, the new Protocol using an established medication.
Personally, as a professional wordsmith, I suspect that your battle with the medical establishment is often based on emotive argument, as opposed to being based on unbiased examination of the science, if you catch my meaning. (How often do phrases like 'snake-oil' and 'witch-doctoring' enter the conversation?) It's all in how you market yourself. If this was a marketplace (which it is) and you were trying to sell your protocol (which I suppose you are) you'd be looking at who your market is and what they want.
I can't think of a better reason for an average Physician to use a new protocol than the fact that it will do the best job of curing their patients. I've said to my doctor, "I'm your guinea pig; when you have cured me, you may then feel confident to use it on many more patients. You will be a local hero." (Not that he has a big ego about it, but other doctors may respond to this.) ~Claudia
-Stand firm in trusting your instincts. I won't make excuses for what your doctor thinks about sarcoidosis, but what was in the medical texts 20-30 years ago was in error. You doc needs to be open to new information about a disease that has long been little-understood by the medical community. Will your doctor be open to your helping him understand the disease by sharing PubMed articles with him?
Don't let the doctor befuddle you. He will either listen to you and learn new information or not. If not, then you need a new doctor.
You will need to make it absolutely clear that you refuse to take prednisone and your husband supports your decision. I think the words I finally had to use were, "I will risk dying of sarcoidosis before I will accept the risks associated with taking prednisone." Then remind the doctor that you want to continue on the plan to implement the MP.
Remember that doctors get scared. They don't like seeing patients decline from a disease they know little about. I know it seems odd, but if you are calm, self-assured and determined, your doctor will probably see the light. Docs bully and balk when they are scared, it's been my experience. Remind/challenge doc that there are NO studies to support the notion that prednisone changes the long-term course of sarcoidosis. Tell him your goal is long-term life and ability to enjoy it, not a stop-gap to slow your decline. That's why you decided on the MP, isn't it? ~Belinda
-There are so many distracting claims for just about everything now. It must be hard for the medical community to just stop and look at the data, especially if they have worked with many many chronically ill patients and watched them decline and die (Sarc and Lyme are fairly efficient killers).
Skepticism aside, you control who you hire for health care. Taking responsibility for myself, I read the data and determined that my life was the one at most risk if a health care provider was skeptical (and mine was). I was ready to take my business to a neighboring state if necessary. Fortunately, it was not. With help from the Request for Doctors option on this board, I found a new doctor with a delightful spirit of adventure and curiosity, and he wasn't ready to say current consensus had already figured out my fate.
One of the most important threads on this site is the REQUEST FOR DOCTORS LIST (click here Not only is it an outright statement by this board that doctors are a critical member of your health care decisions and they value that, it is also a statement of the growing numbers of physicians who must note the difference in patients overcoming bacterial infections that got missed in the first round of research on that subject, decades ago. ~jrfoutin
-Doc proceeded to tell me he was skeptical about the MP but it was clear that he had not done much research but did try to locate it in his manuals and texts. He could have at least reviewed the materials I printed out for him when he agreed to write the scripts for which I am thankful.
I asked Doc if I decided to give up on the whole Mp thing what do you have for me? Doc's reply was," well NOTHING!" I responded , "What about the massive doses of prednisone?" He said "yes?" Then I replied, " but you have seen what prednisone does to people? Doc said of course! And I said " then we don't have a choice do we? So let's start clearing out the MP Wing of this office and turn off the darn flourescents" I was inspired by this meeting surprised by his candidness how helpless Docs must feel when they don't have answers. ~gunz
-We have described, in exquisite scientific detail, the cause (pathogenesis) of sarcodiosis. We have demonstrated a cure. Our recent conference made that absolutely clear.
It may take 20 years, or more, until your doctor spends the time to read and understand what we have done. You have to help him/her. You have to become proactive. You have to ask yourself "Why do I need to delay implementing the cure one more moment?" "Why do I need to risk one more surgery, one more diagnostic procedure, each of which has a finite risk associated with it?"
We have demonstrated that sarcoidosis is an aggressive systemic disease. Once you have that diagnosis then just about every other symptom you experience will almost certainly result from the same cause - the intraphagocytic pathogens.
Or you could just decide to wait the 20 years. Either way, you are at a crossroads. ..Trevor..
-If you have not prepared your doctor in advance or if you doctor has not already agreed to do the MP, you need to have your approach down pat.
What I did was have a one page summary of important information with URLs, a bunch of printouts that I could hand the doctor in response to anticipated questions (I only handed them over if a question was asked and was prepared to go home with any of them that did not answer a specific question asked), and a list of what I needed from him to begin the protocol. (Because he was a new doctor, I also had an activity matrix and a symptom matrix so that he could be apprised on the extent to which my illness debilitated me.)
Some people would say I had too much information and could have overwhelmed the doctor, but this doctor took the time to go through the symptom and activity matrix first, then reviewed the one page summary, and gladly accepted each handout that I gave him in response to a question. (And I think the fact that I didn't throw everything at him at one time helped.) By the end, he was fairly confident from everything that I said and did (my organized approach) that I had a real handle on the MP and could get most of the support I needed on this site even though he expressed a real commitment to become knowledgeable. ~eClaire
Last edited on Tue Feb 19th, 2008 08:17 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: Mon Oct 17th, 2005 21:02 |
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(filelink)
 JRFoutin wrote re Benicar:
As for off-label argument for Benicar, be sure to mention these things:
- Prednisone and all it's rotten side effects is off label for Sarcoid, why the sudden pickiness about Benicar and it's excellent safety profile?
- Print Benicar FDA sheet and on page 13, base of page under "Dosage and Administration" First sentence in first paragraph under subheading clearly states "Dosage must be individualized." That means the recommended dosage is just that, recommended (not the only alternative). If not, it wouldn't make that bold little statement at the beginning of the paragraph.
- Hundreds of MP patients have been and are currently downing the equivalent of 120mg to 160mg Benicar every day already, for years, not just weeks. Your doctor can call my doctor if there is a question (you have that detail), and as a second opinion, your doctor can call Dr. T. Marshall, PhD or better yet, get active on the medical professional's board to get all her questions answered.
- Notice that Benicar really is only effective at lowering BP to a certain degree, and then it plateaus. That logic is hinted at in the FDA document as why no more than 20-40mg is logical for BP reduction. The little graph that comes with the prescription clearly shows that.
- Lower levels --like the level recommended for Blood Pressure-- of Benicar can cause problems for those with Sarcoidosis. That's one of the first indicators that caught Dr. Marshall's attention in the first place for Valsartan, a similar but less effective angiotensen-II blocker. I had a very real-life event (your doctor can call me about) when I took lower than optimal for MP doses. Benicar PROTECTS Sarcoidosis patients at higher levels, not at BP dose levels. Trust me, your doctor doesn't want to have you find that fact out the hard way like I did.
- My first doctor was intimidated by the pharmacy/insurance facade, but the second just plowed through it like child's play.
- The big ARF press release for October is all about filing for orphan drug status for Benicar and 2 other antibiotics. Hand your doctor a copy of the press release. Even if orphan drug status is pending, one must certainly wonder why any non-effective treatment regimen would be submitted when understanding the costly great lengths required for that application. Submission alone is a blatant process of mainstream medicine, with significant scientific proof requirements.
If that doesn't do it, then give her the URL for the Benicar thread on this board and beg her to read it for herself.
Benicar is the one constant protective chemical foundation for the MP that flips the switch on a patient's immune system to "see" the invading bacterial infection, as well as providing critical protecting during the herx process. The targeted designer drug Benicar is a critical key to your success.
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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 Mar 19th, 2006 20:22 |
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Published papers for your doctor's 'due diligence' file
Our PubMed paper at URL
http://tinyurl.com/5rgmq
and its free fulltext at URL
http://yarcrip.com/sarcoidosissuccumbs-preprint.htm
and the peer-reviewed publications from JOIMR such as "Putative ..."
http://joimr.org/marshall-vol2-no2.pdf
These are the two papers published in medical journals:
Marshall TG, Fenter B, Marshall FE: Antibacterial Therapy Induces Remission in Sarcoidosis. Herald MKDTS 2004g; Volume III: Release 1. (The Journal of the Interregional Clinical-Diagnostic Center, Kazan, published in Russian translation). ISSN: 1726-6149
Available from URL http://tinyurl.com/6md8g and in English here..
Marshall TG, Marshall FE: Sarcoidosis succumbs to antibiotics - implications for autoimmune disease. Autoimmunity Reviews,2004; 3(4):295-3001.
Available from URL http://dx.doi.org/10.1016/j.autrev.2003.10.001
PMID: 15246025 or access FullText at author website
The latest papers and presentations to give your doctor
You might point your doctors to Dr Marshall's recent work on molecular modeling which describes the effect of the ARBs (and the superiority of Benicar at the appropriate dose) on the nuclear receptors of the immune system.
Common angiotensin receptor blockers may directly modulate the immune system via VDR, PPAR and CCR2b (1-10-06)
http://www.tbiomed.com/content/3/1/1
Also:
A 'RealVideo 9' version of the DVD of Dr.Marshall's FDA CDER presentation is available online at url
http://autoimmunityresearch.org/fda-visiting-professor-7mar06.ram
"Marshall TG: Molecular genomics offers new insight into the exact mechanism of action of common drugs - ARBs, Statins, and Corticosteroids. FDA CDER Visiting Professor presentation, FDA Biosciences Library, Accession QH447.M27 2006"
The original DVD of the presentation can be requested from
http://autoimmunityresearch.org/fdacder.htm
Papers for Physicians lists all of Dr. Marshall's Research Papers and particularly a copy of the FDA Designation approvals which you can find in this file. http://www.fda.gov/orphan/designat/alldes.rtf
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Aussie Barb
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Posted: Sat Jul 8th, 2006 06:43 |
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[filelink)
____________________
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: Tue Nov 7th, 2006 22:30 |
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(filelink)
Reference material for busy MDs new to the MP
Reference material is a nice introductory gift when you meet with your new doctor. (Make one for yourself too!)
See:
Downloadable MP Documents Formatted For Desktop Printing
The Marshall Protocol, Th1 and D
Dr Marshall's Karolinska Poster PDF
Phase one in b/w font: http://autoimmunityresearch.org/phase1.pdf
There are Quick Reference laminated color charts for all 3 phases. (Phases 2 and 3 are available only to members who have completed phase 1. Your physician has access to all guidelines in the Private Section for Health Professionals.)
Color/laminate: http://www.marshallprotocol.com/forum35/6607.html
Suggested:
1st laminated quick reference:
Front = Phase 1 / Back = Medical Interactions
For those in Phase 3 or 3:
2nd laminated quick reference:
Front = Phase 2 / Back = Phase 3
Kinko's or similar copy center can print out the Quick Reference PDFs and laminate them for you in short order. (Take the files in on a CD or just have Kinko's download them from online links.)
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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 Jun 29th, 2007 00:48 |
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(filelink)
Letter of introduction for your MP supportive doctor
Dear Doctor,
Thank you for agreeing to help your patient with the Marshall Protocol. S/he is a member of our study site for the MP and has asked for our assistance with this unique, curative therapy.
All website moderators have personal experience with the MP and are skilled at peer counseling. We are available 24/7 to answer questions and provide suggestions regarding adjustment of MP meds dosing/schedules within the written MP guidelines when needed. We have a special forum reserved just for urgent situations to allow our members having a significant problem to reach us within minutes after they have tried to contact you. Our intent is not to replace your vital role as the person responsible for your patient's welfare but to assist as needed for information and support. When appropriate, we always refer our members to their health care provider.
The MP is detailed and can be confusing to follow for some of our members who are 'brain-fogged'. Most doctors do not have the time or accessibility to meet the demands of patients who usually have many questions about Th1 disease and managing immunopathology on the MP. Five years of running a message board has taught us that folks who do not access our MP information or ask for help on line are at high risk for making a mistake with their meds or the other protocol requirements. Errors in protocol are rarely life threatening but they can cause undue suffering and may hinder progress. Members who post regularly in a progress report greatly increase their safety and chance of success.
You are encouraged to become a member of our on line study site and apply for access to the private section for health care providers. This free service will provide you with the opportunity to ask questions in a discreet setting and dialogue with colleagues who are either on the MP themselves or have patients on the MP. You will find that our site is the location of a comprehensive compilation of scientific papers about Th1 pathogenesis and practical information about managing the MP.
We would take this opportunity to remind you that:
-the Marshall Protocol must not be altered in any way or combined with any other protocols. To do so, decreases the chance of success and may even place your patient at risk for an adverse event.
-photosensitivy is unpredictable. Patients must have adequate eye protection (NoIRs or Bolles) before starting Benicar
-Benicar should not be ramped up. The recommended dose is 40mg q6-8h and it may need to be increased to q4h for intolerable symptoms.
-minocycline may be used palliatively if symptoms exacerbate. Please prescribe the standard amount when you write the script for Benicar.
-all sources of vitamin D are to be avoided.
-many meds, including non-palliative supplements, are contraindicated on the MP.
Your patient has acted proactively in requesting treatment with the MP. We encourage folks to be a respectful, active member of their health care team, to understand how to follow the MP and to share our scientific information with you. Please let us know if we may be of any assistance. You may reach Dr. Marshall at 805-492-3693 or trevor@trevormarshall.com
Meg Mangin, R.N. Director
AutoImmunity Research Foundation
http://www.AutoimmunityResearch.org
Moderator
http://www.marshallprotocol.info
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