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Jelly
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Posted: Fri Aug 20th, 2004 02:59 |
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I had never heard of Sarcoidosis before hearing about the MP. Tonight I thought I would look around and see what it is you go through. What I found was that in most cases Sarcs goes into remission in about 2 years or so, with or without treatment. There are some stubborn cases and that it can severly it effect the lungs, possibly causing death. That is not a typical course though.
"The disease usually regresses spontaneously within two years of initial presentation. Therapy with agents that decrease inflammation may be required initially in severe cases or in cases involving critical organs (e.g. eye, central nervous system, heart, lungs) or when high blood levels of calcium occur. In addition, a few cases progress and require therapy for several years."
Taken from: http://www.sarcoidcenter.com/
Ok, please don't throw tomatoes, but have any of you ever gone in to remission? Could the MP be helping you to go into remisssion faster? The MP hopes you will be well in 18-24 months. Same as remission? Remission is a word rarely heard with CFS/FM. I hope this isn't a down side for us
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Aug 20th, 2004 03:35 |
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Jelly,
Sarcoidosis never goes away on its own.
That is a big lie.
It has caused countless patients to die unecessarily, and is still doing so.
Work through this paper on the recent ACCESS Study and you can see the extent to which this myth has been perpetuated by persons who, IMO, should know better.
http://autoimmunityresearch.org/access-2yr.htm
..Trevor..
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Aug 20th, 2004 03:41 |
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Jelly, (more thoughts)
Last year 73,000 discrete vistors looked at SarcInfo.com
Not one stopped by to say that their disease has gone away.
Each month another 15,000 visitors drop by SarcInfo.com
I am still waiting for the first true case of spontaneous remission to pop up.
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triplecow
Member
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Posted: Fri Aug 20th, 2004 03:51 |
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Kind of reminds me of CFS/FMS. Many people die from these diseases even though so many sites say they just are in pain or suffer or even just in there heads, there are numerous complications though. So many, in fact, the National CFIDS Foundation posts memorials of the people that die from CFS etc.. complications in there newsletter each quarter and the list keeps getting bigger and longer...
Jason/Triplecow
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We're only just as happy as everyone else thinks we are
DX (1999) : chronic fatigue syndrome
DX (2003) : fibromyalgia
DX (2004) : TMJ dysfunction
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Aug 20th, 2004 04:03 |
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Jelly,
Actually, you have hit a nerve, but the tomatoes are out of reach 
Take a look at this piece "Ask the Doctor" written by the physician who runs the website you linked to in your message (above). It was written specifically to denigrate my scientific work. It was published (just over a year ago) specifically to denigrate my reputation.
http://tinyurl.com/k6k4
Note the way they tried to ridicule what we were achieving. Now take a look at the website owner's own comments "Buyer (or in this case Patient) be-wary!"
http://tinyurl.com/5fhe5
The guy that wrote this clear attack on me, personally, is now very ill indeed. His latest health update is here:
http://tinyurl.com/5u3sm
Most sarc patients do not recover from this point (except for those on the MP). It is sad, but also a reflection that we are all faced with choices during our lives, and how we exercise those choices often determines our fate.
..Trevor..
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triplecow
Member
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Posted: Fri Aug 20th, 2004 04:19 |
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Dr. Marshall,
If/when you get some funded research the non-believers should probably backoff and I imagine you'll need another bigger server upgrade. Assuming the double-blind, controlled studies come out positive :-)
Jason/Triplecow
____________________
We're only just as happy as everyone else thinks we are
DX (1999) : chronic fatigue syndrome
DX (2003) : fibromyalgia
DX (2004) : TMJ dysfunction
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Aug 20th, 2004 04:35 |
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Jason,
It is not so much a matter of dealing with 'non-believers' as dealing with folks that actively want to stop my work.
The head of WASOG, the sarc pulmo's association, is Prof. Dr. Om P Sharma, of USC. Before I started to get good results I was in close contact with him, but he has not responded to my emails, Faxes, or phone calls to his secretary, for over 2 years now. Yet this professor apparently still has the duties of an USC academic. I find this truly amazing behavior.
I doubt that there will be any double-blind trials in sarcoidosis, because Dr Sharma himself has witten a paper saying double-blind studies are not ethical in these deadly diseases (at least for testing prednisone) and the same criteria would seem to preculde us doing (or needing) double blind studies. Here is the paper:
http://tinyurl.com/6abtx
His logic (it will take some concentration to follow):
1. Studies using corticosteroids have been criticized for not having adequate controls, not being conducted in double-blind fashion, not providing adequate information about dosage and duration of TX, and not having an acceptable balance of race, CXR stage and clinical symptoms.
2. So Prof. Sharma offers a study of 189 randomized patients with mostly normal (pulmonary function) who received oral prednisone for 3 months, followed by 15 mo. inhaled steroids. Follow-up at 5 years showed only the stage II patients treated with steroids had any improvement in PFT. He noted that "The significance of mild functional improvement in a group of patients with baseline normal or near normal values remains unclear."
3. Prof. Sharma's (IMO faulty) conclusion is:
It is clear that there may never be an ideal prospective double-blind controlled study. Prospective placebo control trials would not be ethical because corticosteroids are extremely effective in controlling symptoms in many patients with pulmonary and extra-pulmonary sarcoidosis. Spontaneous remissions occur in many asymptomatic patients regardless of the radiological stage of the disease. These patients will need to be excluded from any controlled study because it would be difficult to demonstrate therapeutic benefit. Furthermore, the increased frequency of relapses, after treatment is withdrawn, will invalidate the comparison with a placebo control group. Thus in the present state of our knowledge, use of corticosteroids is justified and essential for symptomatic relief and control of disabling systemic involvement.
..trevor..
ps: Thanks to Belinda for generating that summary for us
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triplecow
Member
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Posted: Fri Aug 20th, 2004 04:59 |
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Dr. Marshall,
I assume people who want to stop/block your work are non-believers in the MP!
As for the double blind thing, you are probably correct, as with other diseases that can lead to fatality so quickly, so just a controlled study of some sort is what we need, and funding, of course as always..
Jason/Triplecow
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We're only just as happy as everyone else thinks we are
DX (1999) : chronic fatigue syndrome
DX (2003) : fibromyalgia
DX (2004) : TMJ dysfunction
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Aug 20th, 2004 05:06 |
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Jason,
Ah, yes, funding.
Well, I asked the NIH for enough money to collect the 2-year medical records of the first 50 SarcInfo patients so that their degree of recovery could be independently evaluated.
Need I tell you that the grant was rejected? Technically there was nothing found wrong with the study proposal, but the peer-reviewers decided not to rate it as a priority.
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Posted: Fri Aug 20th, 2004 05:28 |
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Jelly,
SarcInfo was started becauase of all the misinformation about sarcoidosis available on the Internet. We have endeavored to research and analyze all the available scientific data. Our conclusions have been quite different than the self-appointed sarcoidosis 'experts'.
Sarcoidosis is a little-known disease. And those doctors who have heard of it dismiss its importance because they have been told that it usually goes away without treatment. Nothing could be further from the truth. We know the frustration of not having symptoms taken seriously and of only having our disease monitored while we slowly decline. Or being treated with ineffective and toxic medications that only make us worse.
The Marshall Protocol flies in the face of the 'facts' as presented by The Powers That Be'. Instead of embracing a startlingly effective new treatment, they have ignored, ridiculed and tried to thwart our efforts. All we ask is that they engage in meaningful dialogue or prove us wrong. There is so much at stake here and the reaction of the medical establishment has been sadly counterproductive.
I hope that you will trust SarcInfo to give you accurate information about sarcoidosis and help us spread the word that the pulmonologists no longer own this disease. The patients have found a way to get better without them and we will no longer let them stand in our way.
Meg
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Lottie
Board Staff
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Posted: Fri Aug 20th, 2004 10:39 |
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Remission? And, in two years!!? Sigh… if only!! (don’t worry I’m allergic to tomatoes, so I don’t have any handy )
I was diagnosed with Sarcoidosis in 1999. I had had many symptoms of it for much longer. But the first major symptom that I remember was some shortness of breath. Then there was the extreme fatigue when I went to spend a month at Christmas time with a friend. I would wake up to see her off to work, and lay down for "a bit" and find myself waking up when she got home from work. She would then cook dinner for both of us after working all day.
After that, one of the first things that was noted diagnostically was on a sonagram to check my gallbladder. I had a small amount of fluid around my heart. The cardiologist said that it wasn’t significant. The chest x-ray I had prior to surgery to remove my gallbladder was normal. I also had noticed that in my pre-op lab work, my red blood cell numbers were quite reduced compared to previous reports, as was my hemoglobin and hematocrit.
After the surgery, I developed what I referred to as "stand-up, fall down". I had to be very careful when I sat or stood up, and almost passed out several times. I was finally run through a group of tests to try to understand what was going on. After one visit when my GP's nurse was unable to get a blood pressure on either arm, an echocardiogram of my heart showed that there was still a fair amount of fluid around my heart, and thickening of the left ventricular wall, but "not enough to explain my symptoms." I was sent to a pulmonologist who ordered tests to see if I had a blood clot in my lungs. A CT scan with dye showed enlarged lymph nodes around my heart, and other areas between my lungs.
I then had a biopsy of one of the lymph nodes via mediastinoscopy to learn if it was TB, Lymphoma, or Sarcoidosis. I’m a nurse, but like most people, it was the first time I had heard of Sarcoidosis.
The pulmonologist called and gave me the biopsy results with the diagnosis of Sarcoidosis on a Thursday. I spent most of my time online learning as much as I could about Sarcoidosis. Nothing I found gave me any hope to cling to. I read explanations of Sarcoid. I read that they had "known" about Sarcoidosis for about one hundred and fifty years, but no one knew what caused it, and worse… no one knew how to cure it.
I learned about the medications that were used to treat the symptoms. I knew that "treating the symptoms" had nothing to do with a cure. I went to different Sarcoid boards and read what the patients said about their illness, and in general, how much worse they were getting. My GP saw me on the following Monday. He didn’t realize that I already knew the diagnosis.
He was elated to tell me that I didn’t have Lymphoma. I looked at him, and told him that from what I had learned it wasn’t all that wonderful. He admitted that he didn’t know a lot about Sarcoidosis, and asked me to find what I could that might help him to understand it more, and help decide, along with the pulmonologist who had worked with a lot of Sarcoid patients at UCLA. My explanation of why I wasn’t so thrilled to have Sarcoid instead of Lymphoma? I told him that with Sarcoid, I could only see a life(?) of feeling bad, and probably getting worse until I died. At least with Lymphoma, there was a chance of remission, and perhaps getting and/or feeling better… or dying, and not having to live with it "forever".
I read more, and gave him some printouts of the medical information I had found. I told him the about the downsides from the patients themselves. After a while I realized I was tending to stay away from Sarcoidosis on the internet. There wasn’t anything to help me "get better." Only suggestions on how to deal with the problems. All I ever read from patients was the varying degrees of how bad they felt, and/or how they were unable to breathe anymore without oxygen. People occasionally felt a bit better, only to suddenly feel worse than they had been.
I was put on 20mg of Prednisone, and I did feel somewhat better. I could stand up without falling down, and I didn’t feel as short of breath. An echocardiogram of my heart two years later showed that the fluid was gone, and the left ventricular wall was now "normal". At the pulmonologist’s encouragement, my GP and I gradually reduced the Prednisone until I got down to about 8 1/2 mg of Prednisone a day, where my symptoms were "tolerable". I stayed at that level for about one and a half years.
After about three years at the lower doses, some of the extreme fatigue, and shortness of breath were returning. My heart was skipping beats, and going into tachycardia (rapid beats). So, I had another echocardiogram and it showed fluid around my heart, more than the first one showed, and the left ventricular wall was again enlarged, more than the first one had shown. And this was while on Prednisone!
After going over the echocardiogram results, I told my doctor that the only thing I wanted to do was to survive long enough to outlive my mother. I didn’t want her to go through the agony of losing a child. I had accepted that I would be so-called "living" with Sarcoid for the rest of my life, and probably getting worse along the way.
My GP asked me again to find out what I could for him about Sarcoidosis. This time, I was to concentrate on cardiac involvement, and then he would try to discuss it with the cardiologist and the pulmonologist. I found quite a bit. Most of it was similar to the information I had first found, and there still wasn’t much, except to treat the symptoms. Just about everything I had found in the beginning, and five years later, they still only spoke of dealing with symptoms. There was nothing about a cure.
And as far as remission, that had left my vocabulary after the first year that I had tried to learn as much about Sarcoidosis as I could. I did occasionally find someone who felt a bit better (not as though they were cured), only to once again get worse than they had been before.
And then… I ran across SarcInfo. I started reading with the same "despair" and almost "disinterest" as I had read other sites. But, then I realized that these people here were talking with a different attitude! This site was the FIRST that I had ever read that wasn’t full of despair.
I started paying closer attention. I read all of the papers at the top, and printed them all out.
I printed out posts with responses from Trevor and others that explained how they had experienced improvement with the treatment they were on. Not just symptom relief, but improvement! These people weren’t talking about Prednisone and other anti-inflammatory medications, except to tell people to stay away from them… or to get off of them!! What was missing from this site was the despair in the "voices" of those that had been on this protocol. Now, I could see hope.
The explanation of bacteria made sense, especially added to my lifetime history of infections, and treatment with antibiotics. The concept that the bacteria had learned how to hide from my immune system helped clear up the "auto-immune" concept. My immune system knew they were there, and wasn't "out of control", but couldn’t "find" them. So it had been sending out all it’s "soldiers" trying to kill whatever it could, but failing. Then sending out more causing the increased inflammation throughout my system.
On my next visit with my GP, I said, remember when you asked me to find out all I could about Sarcoidosis. He said, "Yes." I said, "That’s good. Here you go!" and handed him about a one inch stack of papers. (I held some back for later visits). He started reading and listening to me help him through some of it, and was just about ready to hand me prescriptions right then and there, and then he then realized we needed to do some testing, and he wanted to spend some time going over the information.
I am quite sure that part of the reason that he was so ready to prescribe the medications for the MP was my enthusiasm. Something he hadn’t seen from me in well over six years.
"The disease usually regresses spontaneously within two years of initial presentation." I’ve often seen another part to that "generally accepted phrase". That if it doesn’t go into spontaneous remission by the end of two years, the probability is that it is that it won’t go into remission. It seems that there are a lot (all?) of us whose Sarcoidosis has lasted more than two years.
Spontaneous remission..? Not here. But, now I have hope. A word I had all but forgotten.
I would never wish Sarcoidosis on anyone. However, I am now grateful that one person who was diagnosed with Sarcoidosis refused to accept the idea that mainstream medicine still clings to… "That no one really knows the cause of Sarcoidosis." I’m grateful that he refused to accept what was supposed to be the inevitable, a life of progressively worse symptoms until he died from the disease that was supposed to go into spontaneous remission. I am grateful that he had and has the academic training and the ability to wade through all of the information that he found and was able to make sense of it all. I’m grateful that Trevor puts up with people whose egos won’t allow them to even see the possibility that what they have believed all along could be wrong. And, I am grateful he is a person who cares about others, and mainly wants to see all of us get well.
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Dx- Sarc 1999 Cardiac, Neuro, Joints, Myalgia, Skin, SOB, Fatigue (Apr 04-1,25 D 48, 25D 17) (May 05-1,25D 35, 25D < 5) Pred x5yrs-now off! 5/19/04 beg Benicar 10/11 beg Mino, 1/24/05 mod P2, 2/2/06 P2, 1/6/07 P3 - Worked as RN until back injury
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Jelly
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Posted: Fri Aug 20th, 2004 17:50 |
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Interesting and unfortunate that someone who claims to be an advocate for Sarcoidosis would misrepresent all of you so badly. Stuff like that doesn't surprise me at all though. We with CFS/FM were given a very tough time and some still are. I'll never forget the time that after being sick for 13 years, I had a doctor who after listening to what I had to say, replied, "You know what were are finding is that CFS/FM seems to be pshycological in nature. What I am going to suggest to you is that you force yourself to get out of bed in the morning. Take 2 Tylenol and try to be more active."
I popped off the table and said "We're done" and started to walk out. She tried to stop me, and I turned to her and said, "Look at me (I looked like he**), do I look like a Tylenol is going to make me better. My gosh lady, I take 16 Advil a day, just to take the edge off the pain. And, you want me to take 2 Tylenol!?!? And as far as getting out of bed. I never get to be in bed. I have to little kids that I am raising" and I walked out.
I would love to go back to her today. She made such a fool of herself, because today CFS/FM is a widely accepted Autoimmune Disorder. I guess that will have to be retribution enough. I'm satisfied.
So I do understand your plight in this regard and thanks for explaininng it without throwing tomates
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JohnMcC
Member in Phase 2
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Posted: Mon Mar 28th, 2005 20:18 |
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Doh!!
I was reading the article about the response from the other sarcod site trying to trash the MP. I laughed as a penny dropped - many months ago I was reading some of the posts on that site and responded with my own story, frustrations and pointed to the sarcinfo site as a valuable resource for what I'd consider a breakthrough. My post did not get "posted" neither did I receive any acknowledgemnt from the web master as to why - -now I know !!!
As my post was not honoured I sent personal e-mail to about 10 people that did have their stuff on the website/group - referencing the sarcinfo site.
John
As long as people have their head in the sand - they won't see the world. I have an appointment with a sarcoid "specialist" coming up - I think it will be short and not very sweet.......
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Diagnosed Sarc by biopsy Jan93
25/04/05(25D-41 1,25D-94 ACE 35)
25/09/08(25D-30 1,25D-63 ACE 35) Phase1 28/09/08
3/12/08 (25D 10.8 1.25D 27.5) Mod Phase 2 22/01/09
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Frans
Member in Phase 2
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Posted: Mon Mar 28th, 2005 21:38 |
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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 MarshallProtocol off 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 (unlike dr Marshall's dear friend Sharma...) 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 I contacted :-)))
However, I have tried to find links of other diseases to the immunesystem. You will not believe this, but: 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)
Sincerely, a sneaky Frans
Last edited on Mon Mar 28th, 2005 22:22 by Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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BARNEY
Moderator
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Posted: Fri Apr 1st, 2005 05:43 |
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Barney here!
There is an old saying,
"DON'T KNOCK IT IF YOU HAVEN'T TRIED IT!!"
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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BARNEY
Moderator
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Posted: Fri Apr 1st, 2005 13:02 |
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Barney here!
It appears I need to revise my statement on this thread. THANKS FRANS for all you are doing for MP.
To all those who have not tried it and to all those who want to slam dunk Trevor's ideas (MP) and are ill, there is an old saying,
"DON'T KNOCK IT, IF YOU HAVEN'T TRIED IT!"
means....if you have not tried to get well with MP, please don't talk against it unless you know (with your own body) that it does not work.
I am here to tell you....IT DOES WORK AND I AM A LIVING EXAMPLE!!!.
It just really upsets me to hear the people who write on the MP sites putting MP down when they have not tried it.
____________________
64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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Ron Ball
Member in Phase 3
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Posted: Fri Apr 1st, 2005 17:28 |
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| Reggie White, the strong and great football star, Died of Sarc. Maybe their difinition of remission, includes death.
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Dogster
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Posted: Fri Apr 1st, 2005 22:39 |
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Lets see if I have gotten this right. Sarcoidosis is a disease which usually doesn't need to be treated, usually goes into remission by itself. However, it is a deadly disease and so double blind studies on it arent ethical. The definition of remission can include death.
OK I"M PERFECTLY CLEAR NOW!!!!!!!!!!!!!!!!!! Dog
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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Dr Trevor Marshall
Foundation Staff
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Posted: Fri Apr 1st, 2005 23:11 |
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Dog,
There is NO EVIDENCE that Sarcoidosis goes into remission by itself, indeed, the studies show otherwise. The concept of autonomous remission is an old wives' tale passed down from one generation of pulmonologists to another.
Similarly, corticosteroids actually make the disease worse (in the long run), not improve things. There are studies showing they increase relapse, and none showing that they improve long term outcome. Another old-wives' tale.
Take a look, eg, at
http://autoimmunityresearch.org/sarcoidosis.pdf
and
http://autoimmunityresearch.org/access-2yr.htm
and
http://tinyurl.com/66ahp
..Trevor..
ps: alternatively, you could ask your local pulmonologist for the name of ONE biopsy-diagnosed sarcoidosis patient who has no signs of disease (no fatigue, no blood-work problems) ten years after diagnosis. Such a testament to the old-wives' tales just doesn't exist...
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Aussie Barb
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Posted: Fri Apr 1st, 2005 23:33 |
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also
Dr Trevor Marshall wrote:
I have submitted a formal study proposal to the NIH, and we have been discussing these issues with people whose jobs it is to decide what kind of research is most appropriate. .......... etc ...
..Trevor.. @ MP Double Blind
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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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Dogster
Member in Phase 3
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Posted: Sun Apr 3rd, 2005 01:42 |
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Sorry, all , and Dr. Marshall especially,
my above comments are a bit of a satire of the medical system, but I guess it wasn't written well and wasn't obvious.
Having been extremely ill for 25 years and having been through all sort of medical hoops and having done extensive reading (although a lay person with brain fog), this kind of non-logic and poor research which was being discussed in this thread, about sarcoisdosis, is all too familiar to me (as those of us with diagnoses of CFIDS or lyme or fibromyalgia etc etc etc). That's all I meant.
I have told doctors for 25 years that I am INFECTED with something, and would they please treat that. It took me about about 7 or 8 years just to get pain control and sleep control. I also have at least 3 sets of different immune panels that have been done which objectively show low immunity. Yet know one has treated the infections!!!!!!!! Frustrating. I was just about to go to a lyme literate doc for that method of treatment when I stumbled upon the Marshall Protocol board, and immediately realized this tx method is superior to antibiotics alone, and just D diet restriction and light restriction has shown me I am now in the right "ball park."
I also had one friend who got more sick and more sick, still the docs wouldn't acknowledge how sick he was, he tried to get on disability for 15 years (he even got his congressman involved) but failed, and then this non-sick non-disabled person died in his 50's. Well, we've all been there. Dog
If this is too off-topic, just delete. I guess we all have these horror stories.
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CFS lyme RSD: pain migraine| tylenol fioricet flexeril tramadol temazepam| acidoph guaif/cold| Q| Cut D/exp Feb05| NoIR Mar05| June05 Comm Beni Q8H| July05 mino| Jan06 PH2| Aug06 1,25D=29 25D=17|
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ShrnHml
Member in Phase 2/3
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Posted: Sun Apr 3rd, 2005 21:12 |
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Dog.....my horror story is not unlike yours and many others.
We both got sick back when when our illness was called "yuppie flu". Going from doctor to doctor is so hard when they look at you like you're a psychosomatic case. One doctor even went so far as to say that I just needed more sex in my life. So I feel I have been demeaned by the best, and sometimes I feel like being sarcastic too. Sarcasm definitely has its place. At least it makes us feel better.
Sharon
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Neuroborreliosis, MP 3/05, 1,25D 62; 3/06 25D<4, ModPh2 12/05, Premarin, Effexor, stopped Benicar 1/07....no longer in study
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Frans
Member in Phase 2
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Posted: Mon Apr 4th, 2005 15:46 |
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BARNEY wrote: Barney here!
It appears I need to revise my statement on this thread. THANKS FRANS for all you are doing for MP.
You make me blush Barney !
I was doing this for Ellen, but the more I learn about MP, the more I see what a revolutionary breakthrough the MP really is. It can and SHOULD put an end to the (needless) suffering of millions and millions of people worldwide. Dr Marshal deserves a Nobelprize IMO and I will do everything in my 'sneaky' power to make that happen.  But that is not half as important as getting the word out that there is a CURE for all sorts of chronic illnesses of 'UNKNOWN' etiology.
MP will prove itself to be what dr Marshall and the people on the MP already see it really is.
Hang in there Barney, YOU ARE GOING TO MAKE IT, AS WELL AS ELLEN WILL !!!!!!
Sincerely, Frans
Last edited on Mon Apr 4th, 2005 15:51 by Frans
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Burn-out/nervous breakdown Jan01 125D 48 25D8.48 Ph1Nov06 ModPh2Jan07 Ph2Apr08 Cipramil Seroquel NoIRs lite exp r/t work cover up 25D3.9(Oct07)
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cloudysunnee
Member
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Posted: Sun Jun 12th, 2005 00:49 |
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Forgive me if I am asking this question in the wrong forum. I am trying to find a good place and am finding it difficult!
While I have read about possible reactions in patients with cardiovascular disease and the MP I didn't read anything specifically regarding congestive heart failure. I have CHF with an injection fraction of 30%. The cardiologist I see told me that he thought sarcoidosis was the culprit. I was diagnosed with sarc in Sept. of '04. After I was misdiagnosed with pneumonia in July and ended up hospitalized in September. They found it manifested in my lungs and the lymph nodes in and around my lungs. I find the MP very intriguing and it makes me tear up with the possibility of getting better, of having a cure. I am so concerned, though, about the heart failure and MP.
Also I am curious if anyone has heard about this product:
--- Product adverstising edited out by Dr Marshall
Does Dr. Marshall or his cohorts have an opinion about this product and it's capabilities in treating sarc?
Any information you could provide would be very much appreciated. I really would like to know that I am doing what I can to prevent the progression of this disease. The doctors I deal with are very unknowledgeable about sarcoidosis in general. I don't know what might be a sarc symptom or a symptom of something else, and it seems that neither do they. Thank you very much.
Last edited on Sun Jun 12th, 2005 01:05 by Dr Trevor Marshall
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dx: 9/04 sarcoidosis, lung and heart; congestive heart failure; presently take several medications for conditions which may or may not be related to sarc?; researching MP; trying to find WI doctor;
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Dr Trevor Marshall
Foundation Staff
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Posted: Sun Jun 12th, 2005 01:06 |
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Cloudysunnee,
That product is worthless at stopping or slowing the progression of sarcoidosis.
..Trevor..
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Aussie Barb
Foundation Staff
| Joined: | Thu Jul 22nd, 2004 |
| Location: | Australia |
| Posts: | 19553 |
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Posted: Sun Jun 12th, 2005 01:08 |
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Cloudy
see this topic for links that would be good for you to read.. Sarcoid, fast heart rate, & MP
re the cream read precautions in Why do I have to stop taking supplements?
I thought all over-the-counter supplements were safe. Which ones should I be concerned about?
Please fill REQUIRED SIGNATURE LINE see Information to include Thank You ..
If you have any further questions about the MP not answered in the forums on this site or by doing a site search, let us know..
I will post the main info sources here to help you..
ESSENTIAL INFORMATION ABOUT THE MP (Required Reading)
Phase one, D-tests, foods to avoid, avoiding sun/lights, Benicar, physician papers, NoIR sunglasses, tutorials and more.
MP FAQs.... Easy Finder (Required Reading) Answers to over 50 Frequently Asked Questions-Herx, Antibiotics, Medications, Blood pressure, Light, Blood tests, phase two, statistics, recovery, Th1 diseases, etc.
all also found at ALPHABETIZED INFORMATION SOURCE The ABC of MP
Side Topic Discussion Related to the Marshall Protocol
Search Feature at the top of each page will take up to 6 words
Barb ...
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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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DaveW
Member
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Posted: Sun Jun 12th, 2005 23:07 |
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Hello (((Good Folks))),
Another aspect of resistance to the MP that cannot be overlooked is the potential economic impact it will have on the pharmaceutical companies and the medical system and profession that they support.
The entire medical system and profession is driven by the large pharmaceutical companies. They heavily finance the medical schools and "suggest" curriculum. They provide "free" drug and medical reference books to many Doctors, that happen to have glossy and colorful full page ads every few pages, that tout the "wonderful" (and more expensive) new medications available.
Even the Doctors' desk pads and medical information posters and displays (rife with sales propaganda) are often provided "with compliments" by the pharmaceuticals. These methods of influence by the pharmaceuticals over the Doctors are but a few, but they should serve to provide an idea of the brainwashing our Doctors are subjected to.
Many Doctors are very busy and fall back on the use of this omnipresent and conveniently provided "scientific information" (sales propaganda) of the pharmaceuticals as their major source of info to "keep up".
Most Docs have become programmed pawns of the pharmaceuticals without even being aware of it. Their standard (assembly line) operating procedure (and approach to medicine) has all too often been shaped by these economic forces into something similar to the following;
Next patient....
What is your symptom?...
(Multiple symptoms are frowned upon, or dismissed as obvious psychological problems).
Here is your prescription/script....
Next patient...
In some cases they may run some tests before writing the prescription. Virtually every and any health problem gets you a prescription for something.
The only symptoms that are recognized as significant, are those for which there is a drug to relieve symptoms. If you ask about "the cause" or "a cure" for your disease, the Docs just look at you a little stunned, and then quickly dismiss you as being completely out of touch with medical science and practice.
Docs respond this way because they know little or nothing about causes or cures, which is not surprising considering their major source of "medical information". Talk of causes and cures is associated with quackery, and considered to be heresy against the medical status-quo.
Docs (by and large) are not stupid people. It sometimes blows me away to see how much they are so greatly missing the mark, with absolutely no realization of it! This brainwashing is both insidious and profound.
Even Docs who are insightful and understand the nature, source and economic incentives behind these influences, may be intimidated against speaking out (or conducting their practice) against the status-quo. This often supports a misguided "group think" that is really all about maximizing income rather than health.
Problem is, the prescriptions the Docs give you never provide a cure for any major disease. They only provide symptom relief - so the patient must keep buying the drug indefinitely. This is because pharmaceuticals will not even fund the research "cures". It is bad business, and profit is their number one over-riding priority.
Even though their "great and wonderful" new drugs rarely (if ever) provide a cure for any major disease, the pharmaceuticals spend multi millions to advertise and promote these drugs as "the best new treatments from the latest research and technology" - and the Docs suck it up.
Often, the great (and more expensive) new drug, may simply be an old drug (sometimes with minor formulation changes), renamed, repackaged and released with a major marketing campaign directed at Doctors (and/or prospective patients).
Most real new drugs are actually discovered in University research labs (that are mostly publicly funded), but the pharmaceuticals get the patent (cheap) and get away with charging mark-ups that are commonly hundreds to thousands of times over production cost to "recoup their high research costs" which they argue is necessary "to keep up the battle against disease".
The major pharmaceuticals (and other corporate interests) have our medical system configured into quite the profitable game, and they do not want to give it up.
Can you imagine what the pharmaceuticals stand to lose if this relatively inexpensive cure for Th1 (the MP) becomes accepted and popular?
Can you imagine how much will be lost by the entire medical profession if all Th1 diseases were cured within a few years? There would likely be an over supply of Doctors, hospitals, testing equipment and operators, labs, pharmacies and all of the medical support industries - driving the demand, income and prices down for these services, facilities and occupations.
The pharmaceuticals would also be major losers. Think of the quantity of drugs sold to relieve the symptoms of all patients with Th1 diseases. Think of the total revenue these sales generate.
Two to three years sales of benicar (by only one company) and a few antibiotics sold to each Th1 patient would not even begin to compensate this loss.
We are talking hundreds of billions of dollars of lost revenue. Can you anticipate that the "powers that be" might put up some resistance to the MP (or anything else that threatens this income)?
I believe that the fight against the MP will get much stronger as its success becomes more known and popular. When the profits of the big pharmaceuticals start to decline significantly I suspect we will see every possible effort to malign, discredit, trivialize and dismiss the MP.
The corporate entities who stand to lose will use their incredible wealth, power and influence to discredit the MP in any way possible (including illegitimate means), and all of their pawns of the current "status quo" (who also stand to lose economically) will be supporting the intitiative.
I would not be surprised at all to see fabricated or rigged "scientific data" by "well known experts" that would show the MP to be ineffective or even "dangerous to your health". Creating fear would be a very likely tactic in an assault against the MP.
I would also not be surprised to see (purchased) judges who closed the websites, and prohibited board staff from opening other web sites, or otherwise disseminating MP information or support. Of course these measures would be touted to be "in the public interest", or "to protect the public".
I would also not be surprised by attempts to "buy off" and/or threaten Dr Marshall and major proponents of the MP in order to suppress it.
When simply ignoring and dismissing the MP is no longer effective, any tactic that would even just slow its acceptance for a few years (with any type of controversy or fear they could drum up and propagate) would mean billions to the industry.
When this kind of money is involved, there are no legal or moral boundaries that will not be crossed to protect and preserve it. Large corporations tend to be "without conscience", and many others just blindly follow, assuming that "they must be doing the right thing".
I don't think the incredible potential economic impact of the MP can be overlooked when trying to understand its resistance. The status quo is indeed a very large, powerful and insidious adversary.
The projections herein of what might be expected in future are just my own projections. But such tactics and responses have been quite common in the past when much less money has been at stake.
Regards,
- DaveW
(Business Instructor)Last edited on Mon Jun 13th, 2005 00:10 by DaveW
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MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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shamutooth
Member in Phase 3
| Joined: | Sat Sep 25th, 2004 |
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| Posts: | 227 |
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Posted: Sun Jun 12th, 2005 23:39 |
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Dave, I love your posts.They are very well written. I agree 100%.I'm also upset at the system about the high cost of medical insurance because of the lack of tort reform. We have lost a lot of great Dr.s because of this. Many simply cannot make any $ and have to retire or find a different line of work.The fear of lawsuits keeps many Dr.s from prescribing the MP. I spoke to one Dr. who said the science behind the MP was very sound, but his insurance co. wouldn't let him presribe it! We are definitely fighting an uphill battle.I think that TPTB will fight the MP tooth and nail, because it may be the cure for many other diseases as well, such as: OCD, heart disease, dementia,ALS,alzheimers,Parkinson's,GWI,etc. Sometimes I think Dr. Marshall will one day be looked on as a successful modern day Ponce De Leon SamLast edited on Sun Jun 12th, 2005 23:41 by shamutooth
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MCS,CFS,IBS,insomnia,anxiety,depression,started Doxy July'04, MP Sept. 04; Benicar 40mg 3/day; Phase 2 started 2/2/05; 6/28/05 D results 25D=29,125D=47;11/13/05 25D=10
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jun 13th, 2005 00:20 |
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DaveW,
Many of the things you predict have already occurred.
A Sankyo pharmacist registered for, and attended, the Chicago conference incognito, without declaring her affiliation to Sankyo. Soon after the Chicago conference she wrote to Meg and asked for a list of all the doctors who are prescribing the MP.
At that point we told her that she had been identified from day 1, and that we would only give the list of Doctors to somebody who had an honest need for it. There have been several discussions on several issues with her since then, with Sankyo clearly stonewalling, and apparently wishing to not help us, or the suffering patients, in any way.
Some two years ago Meg received an email from one of the sarcoid Pulmonologists, a member of the Editorial Board of CHEST, which said that my research was not of sufficient quality to ever be published, and that peer-reviewers were coordinating their efforts to make sure none of my work was ever published. Further, unless Meg broke all ties with me immediately she too would be placed on the blacklist, and never be able to publish again.
As you know, we broke through that barrier, in part because the pathogenesis worked in Chronic Lyme and CFS, as well as Sarcoidosis, in part because of a dear friend at a major University.
The websites have been designed to withstand the legal actions you portend. You might recall that we are VERY strict with what gets posted here. That strictness, some call it censorship, is designed to keep a clean site that we can control, and which will not contain anything far enough away from the mainstream to allow TPTB to shut it down.
Dave, you clearly understand how the system works. There is a heck of a lot of shared expertise here. Let's hope we can all muddle this humongous change through TPTB without too much grief for all concerned.
..Trevor..
Last edited on Mon Jun 13th, 2005 15:38 by Dr Trevor Marshall
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Guss Wilkinson
Member in Phase 3
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Posted: Mon Jun 13th, 2005 01:03 |
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Hi All
I completely agree with you, Sam, there is a hell of a lot of good writing in these posts and they really are a pleasure to read.
I am not sure, however, that I completely agree with the conspiracy theories being bandied about though…
Yes, I agree and admit that I believe that most pharmaceuticals put cash values on diseases and focus, therefore, on treatments rather than cures…to a degree.
Having grown up in a medical family, and having many friends that are doctors, and having a semi-medical degree myself (optometry) I find the thought that Doctors are accomplices in this grand plot is a little far fetched in my opinion…
· Most vaccinations are administered with a view to disease prevention
· Most operational procedures are carried out with the intention of a cure
· Many antibiotics are definitely cures for different infections
· Etc.
Medicine does move slowly, but for good reason. Doctors, health professionals and authorities are continually bombarded with pseudoscientific and paranormal claims, cures, treatments etc. And each of the followers, proponents and advocators are as passionate and convinced as we are about MP. There must be a mechanism to stop deluded people harming themselves and others.
It is no wonder why there is a natural reaction by professionals to dig their heals in? When a patient turns up and makes a claim that they have access to a little known cure, they are immediately labelled a fruit-cake…and nearly every time, the doctor will be right.
I believe the ongoing discussion must be sober, it must be rational, it must be based on fact (and we must continue to patiently gather those facts) and it must be as unemotional as possible.
I have talked through with many doctors, the science behind the Marshall Protocol – all have shown interest and none have rubbished it. All that I have spoken with have stated that they are prepared to prescribe the treatment for those that ask for it, but none would actively advocate the treatment until they either have gained more experience with the protocol themselves, or that they are able to see more unbiased research on the protocol.
It is not as if the MP cure is instant is it? It is a long process involving much suffering, expense and pain – and in the beginning, we actually feel worse!!
Medicine is a very imprecise science and doctors are human. I agree, we must be relentless, but we must also be patient.
I think that Trevor and his team are geniuses that deserve a Nobel prize (and it may well yet happen) but we must remember that we are voluntary guinea-pigs in a work/study-in-progress. It is new...very new. Let us be careful labelling doctors who don’t listen as stupid…we could all end up growing two heads!!
Take care and be well
Guss
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jun 13th, 2005 01:13 |
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Guss,
Don't you think the liklihood of us growing two heads would be reduced if NIH/NHLBI was actually trying to work with us instead of ignore, isolate and deprecate us? Isn't that what it is all about? Co-operation? Respect?
..Trevor..
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Guss Wilkinson
Member in Phase 3
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Posted: Mon Jun 13th, 2005 01:15 |
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Absolutely Trevor!!! I couldn't agree more, but that was not the point that I was making.
Cheers
Guss
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jun 13th, 2005 01:28 |
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Guss,
Please read my posts again. You will find that I am talking about real events - not 'conspiracy theories' - with real documentation to back them up. Yes, I know it is hard to believe, but maybe you do things a little differently in New Zealand. Here in the USA I can assure you that Business plays 'for keeps'...
..Trevor..
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Guss Wilkinson
Member in Phase 3
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Posted: Mon Jun 13th, 2005 01:34 |
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Also, I predict that many will return to their physicians and say...I'm cured, only to have the physician reply - see, you have spontaneously remitted, just as I have predicted.
Short of ramming the 4-DVDs into a place where the sun doesn’t shine, it is going to be very hard to argue against.
My own physician once said to me that he had another case of spontaneous remission where a Sarc patient “…quite far gone, cured himself through prayer.” This is what we are going to have to compete with. Put into the same pigeon hole as prayer!!?
Cheers
Guss
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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Guss Wilkinson
Member in Phase 3
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Posted: Mon Jun 13th, 2005 01:39 |
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You're probably right Trevor, I know too little about what goes on in your neck of the woods.
Cheers
Guss
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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Dr Trevor Marshall
Foundation Staff
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Posted: Mon Jun 13th, 2005 01:43 |
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Indeed, Guss,
"see, you have spontaneously remitted, just as I have predicted"
In fact, that is exactly what a leading WASOG Pulmo wrote in his peer review of one of our "New Treatments Emerge.." paper, recommending that the paper not be published. We got the rejection letter on 21st December 2002. It was a very bleak Christmas indeed in 2002... But it was at that point we realized that we had to seek more effective ways of getting our message heard
Of course, there never has been any good study data showing that spontaneous remission occurs, and certainly, beyond 2 years after diagnosis, even the ACCESS study said that remission was not likely.
But I do not believe that the leaders at the NIH are going to fall for this ploy. Dr Zerhouni is trained as a scientist, and if only we can help him get his staff to concentrate on SCIENCE, then everything will be much easier as we go forward from here.
..Trevor..
Last edited on Mon Jun 13th, 2005 06:49 by Dr Trevor Marshall
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DaveW
Member
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Posted: Tue Jun 14th, 2005 02:41 |
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Hi Gus,
I did not mean to give the impression that this is some kind of conspiracy, and especially did not mean to convey that practicing Doctors were part of a conspiracy.
Rather, what I have described are corporations (and other high positions of power, that are influenced by corporations) that have become very powerful in the American medical system, and who have used that power to serve their personal interests (wealth), often at the expense of the health of patients.
Over time, they have used their power to "shape" the medical system to provide maximum profits to themselves. This is not a conspiracy, it is just people or corporations acting in their own personal best interests.
The pharmaceuticals have done this by shaping the approach of medicine, and the role of Doctors. From the perspective of the pharmaceuticals, the Doctor's role is to dispense their product.
Thus, the pharmaceutical companies have (along with many other strategies) used their wealth and power to influence medical school training (through funding), which influences the very way in which Doctors percieve what medicine is about, and what their role should be as physicians.
The pharmaceuticals have also implemented massive ongoing marketing and promotion campaigns - to influence and encourage Doctors to "prescribe" in response to every symptom a patient may have.
Meanwhile, they have been busy trying to develop a drug to relieve every possible symptom imaginable (so their well trained Doctors always have product to dispense).
This has shaped the status quo of how medicine is practiced in America. The average Doctor is not aware of the great powers that have acted behind the scenes to make the American approach to medicine the way it is. They are pawns in the corporate money making system, just like the patients. Because it has become the status quo, Doctors face pressure to conform or risk being rejected by their peers and the medical profession.
I would like to illustrate by example how the average Doctor is a pawn of the medical system. Most Doctors will use the best treatment available for their patient. But take chemo-therapy for the treatment of cancer for example. This treatment has been around for many decades without significant change. But why would pharmaceuticals want to change it? It is extremely expensive and they make a fortune from it. Thus, we have been giving donations for many decades to "find the cure for cancer", but the system has failed to produce one. Doctors are stuck with the currently available treatments. They are not conspirators, but rather helpless pawns in the game.
Large and powerful corporations have hijacked health care by shaping it to serve corporate profits above all else. The system that they have shaped to do that, has become the accepted status quo.
A status quo tends to be protected by anyone who feels they are served by it. This is why the majority of those who "are doing fine" working in the current medical system will fight against anything that threatens the status quo (such as the MP). Thus, the pawns act to support the status quo. This is not a conspiracy, but it is very powerful.
And, please understand that I did not mean to suggest that Doctors were stupid. I believe that most are amongst the brightest of society, and truly want to help their patients the best way they know how. I actually made a point of saying that they were not stupid, which made me that much more amazed at how effective their indoctrination and brainwashing has been to have them accept the system that they must work within (which is really more about corporate wealth than health).
I know that some Docs (with social, political and business awareness) are even more aware of these problems than I am, but they are still powerless against "the system" and must act within the parameters it sets for them. The "unspoken rules" are such that they must play the game that serves corporate interests to remain successful and respected in their profession.
The pharmaceuticals are not the only corporations who try to shape the medical system in their own best interests. Sam explained to us how high insurance costs to protect from lawsuits pressures Doctors to "Stay in the box - only giving treatments that have been tested and sanctioned by the status-quo". This effectively threatens to punish Doctors who do not "play by the rules". Sam mentioned that this situation badly needs reform in America. Why is it not reformed? I would suggest it is because the powers that be that are making big money from the current system, don't want it changed - and they are "the powers that be".
The corporations shape the system to serve their own interests by ensuring that "the system" rewards those who act in ways that serve the corporate agenda, and punishes those who don't. The many subtle mechanisms by which this occurs is often insidious, and accepted as "just the way the system works". It is very difficult to swim against the stream, and it is the major corporations in the medical industry who have determined which way the stream flows.
Granted, there needs to be some controls on Doctors and treatments to protect the public from bona fide quackery, but you know the system is "not really about health", when Doctors who truly believe that a treatment is in the best interests of their patient, but feel intimidated to provide that treatment. Sam provided an actual example of this for us regarding the MP. Such intimidation is just one more example of a characteristic of "the system" that shapes medicine to serve the corporate agenda.
Note that the term 'quackery" is used to describe what are assumed to be ineffective (and possibly dangerous) treatments. The real characteristic that brands a treatment as quackery is that it does not serve the corporate interests behind the status quo. The ineffective (and known to be dangerous) treatments that do serve the corporate interests behind the status quo are called "good science".
Note also that the abundance of quackery in our society is most often the result of some business endeavor that puts profit ahead of health. Go figure!
The pharmaceuticals also use their considerable power to influence high level government officials (including medical officials), to ensure that the individuals who who are appointed to these positions are "friendy to corporate interests". This ensures that new laws, regulations and policies will serve to protect the status quo, and to resist change - unless that change will serve to further increase the profits of the major players/corporations that control the industry, and the regulators.
To illustrate this, America has recently experienced a scandal where a drug was released that had not been properly tested for safety. When an investigation was done into why the FDA had approved this drug prematurely, it was found that some of the FDA drug approval committee members were effectively respresentatives of the pharmaceutical companies. The "systems to protect public interest" have failed against the power and influence of the corporate motive for profit.
When you look at the highest levels of power within large corporations in the medical field, the people involved are not just pawns of the system like the rest of us. They are corporate executives, who act to pull the strings and shape the system to serve the interests of the corporations that they work for. Some of these corporate executives may also have the title of "Doctor". Some are even highly respected because of their high positions, but they have little in common with practicing physicians.
If the "Doctors" in these high level positions (that provide credibility to corporate initiatives) ever choose to betray their corporate employers and favor society's interests over corporate interests, they are simply replaced very quickly by other "Doctors" who are not impeded by any such "moral restrictions".
Within gov't, the high level officials are very careful to serve the wealthy and powerful corporate agenda, in order to maintain their own elite positions of power. It is the price they pay to be participants in the circle of power. Such is the power of corporations (and money) in America.
I am convinced that the same phenomenon occurs in the rest of the world, albeit to varying degrees. In many countries, corporate influence and control of the medical system may be just as extensive and corrupt, but perhaps not as recognized.
Corporations generally try to keep their influence and control on the QT and behind the scenes as much as possible, and they are generally quite effective at it. Most folks (brainwashed by corporate propaganda) are "in the dark" and only see the tip of the iceberg regarding the extent of corporate power and influence in our health system, even though evidence of it abounds in their faces. I have provided an example (dear to our hearts) below.
It is really quite astounding that our humble and unfunded Dr Marshall has unlocked secrets of the cause and cure for Th1 diseases, while many hundreds of highly trained specialists and researchers who have had hundreds of millions (or perhaps billions) of dollars of funding have never uncovered these findings. Is this not strange?
This does not detract from the obvious brilliance of our good Dr Marshall, but a comparison of manpower and resources suggests that "the system" should have come up with these discoveries years ago. This tells us that "something is wrong here".
The fact that Dr Marshall still cannot get any support or funding in spite of clear successes, frantically waves a flag that something is very wrong with "our system". Attempts could be made to explain this away, but they are inadequate excuses at best.
Research funds have been diverted away from such research as Dr Marshall's(precisely because it does have promise of a cure). Pharmaceutical companies estimate the revenue earning potential of every drug that they consider researching. They then only research those drugs with the highest income earning potential over cost. This may just sound like "good business" (because it is!), but the effect is to deny funding for research such as Dr Marshall's (or any other "cure" for that matter, as cures do not generate much profit in the long term).
With all the scientific progress we have made in recent decades, the cures for major diseases have been much too too few and far between. The system has failed us as a society. However, it has not failed to generate incredible profits for the pharmaceuticals and other major corporations in the medical industry (because this has been what the system has really been configured to do).
I recall an American news article (from last fall) that reported that an association of American scientists complained to Congress that the pharmaceuticals were not researching new antibiotics fast enough to keep up with new and evolving species of bacteria (which could have massive and disastrous conseqences in the near future).
In response, a spokesman for the pharmaceutical industry reported to Congress that "drugs that would be used longer term are preferred for research funding, unlike antibiotics - which are normally only taken for a short or limited duration, and thus have a much smaller return on investment". The article did not speak of any action, decision or order to by Congress to address the problem.
I couldn't believe that the pharmaceutical industry rep effectively admitted to an agenda of "profits before health", and was further astounded that the indoctrination of the entire public to accept the corporate agenda (of profit first). This indoctination was/is so pervasive, that there was no public uproar in response! To me, something is very wrong here. Corporate owned pharmaceuticals are obviously not working in society's best interests - but rather for their own, and worse yet - we have come to accept this!
I see Dr Marshall like a very little David up against a monstrous Goliath of "systemic barriers". I think his decision to take his science and protocal directly to the patients (and their physicians) - was nothing short of genius.
If he (and his great team) can cure hundreds (or perhaps even a few thousand) Th1 patients around the world (under the care and eye of their Doctors), there is nothing that the pharmaceuticals (or other defenders of '"the status quo") could ever say or do to convince these people that the MP does not work!
Once thousands of patients and Doctors (world wide) have personally experienced or witnessed the MP cure Th1 diseases, the cat will be hopelessly out of the bag and the whole approach to Th1 disease (and many other diseases) may change as a result.
I can actually see how this approach may actually result in David beating Goliath! ......and it makes me chuckle with delight!
Gus, I hope this post has better explained the complex nature of some of the problems inherent to the medical system in America (and many other countries). I suspected from your response to my first post, that I had not clearly communicated what I was trying to say.
Regards,
- DaveW
____________________
MP Aug14/04,Pre-MP D=19.6,1,25D=37 ratio 1.89 P2>12/27/04.Back to P1 fall/05.Back to P2 05/06. 21 yrs neuro-lyme not dx til 11/05. OlmesTR 40 mg/7hrs. Major: Weakness,IBS-C,pain,bad sleep,anxiety,depression,cognitive focus,memory,CMV,epilepsy & osteo
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Guss Wilkinson
Member in Phase 3
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Posted: Tue Jun 14th, 2005 03:26 |
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Hi Dave
Holly sh*t, that’s what I call a post – I really appreciate the effort that you have gone to in order to educate us ignorant/naive inhabitants of sparsely populated islands in the south Pacific. What you outline certainly sounds like a conspiracy at first glance but I have only read your post once and I shall read it again in order to let the info sink in.
Take care
Guss
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Dx Sarc May 2002 Stage 2. Estimate Sarc since 1987. Lungs, Joints, Kidneys & GI. Two failed Prednisone courses. (Started MP: Oct 2003 - D25...31ng/ml, 1-25D...76 pg/ml), Phase III since July 2004; BP 100/60. Feeling pretty good!
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bjcarroll
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Posted: Tue Jun 14th, 2005 10:21 |
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Wow, I must say that post was quite lengthy. I agree with most of what you're saying. I'm married to a doctor who honestly believes that all drugs are poisons, but will use them if it's in the best interest for his patients. Can't say for sure how much my husband knows about the dynamics of what you're saying, but I tend not to discuss this with him.
I am very interested in this thread of sarcoidosis and remission. I was diagnosed with sarcoid last year, but it is believed that I've had it much longer based on my symptoms. My husband and my pulmonolgist are in agreement that my case most definitely must have burned out. As long as I keep my asthma under control, they feel I will have no more problems with sarcoid. However, in the back of my mind, I wonder.
This is the first that I've heard someone say it never goes into remission. What is the basis for this statement? Is it because the granulomas do not go away? It would make sense to me that if we are in remission, the granulomas would go away. I've been trying to wade through all the info on this site, but just don't know which way to turn.
I have a lot of other questions and concerns, but I won't digress here.
Thanks, Barbara
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Sarcoidosis-lungs. Fibromyalgia. Asthma. Take flovent, serevent, singulair, albuterol, humibid, cardizem.Researching MP.
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Aussie Barb
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Posted: Tue Jun 14th, 2005 10:46 |
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Barbara
welcome to MP.com and Thank you for posting.
for particular info see SARCOIDOSIS OVERVIEW Treatment, diagnosis, symptoms, remission, PFTs, staging system, ACE, etiology, standard treatments
Take your time to read the information.. and if you have any further questions about the MP not answered in the forums on this site or by doing a site search, let us know..
I will post the other main MP info sources here to help you..
ESSENTIAL INFORMATION ABOUT THE MP (Required Reading)
Phase one, D-tests, foods to avoid, avoiding sun/lights, Benicar, physician papers, NoIR sunglasses, tutorials and more.
MP FAQs.... Easy Finder (Required Reading) Answers to over 50 Frequently Asked Questions-Herx, Antibiotics, Medications, Blood pressure, Light, Blood tests, phase two, statistics, recovery, Th1 diseases, etc.
all also found at ALPHABETIZED INFORMATION SOURCE The ABC of MP
Barb ...
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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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dsiebenh
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Posted: Tue Jun 14th, 2005 18:03 |
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I agree with the analysis of how Big Pharma is only interested in developing long term maintenance medications, and has no interest in a "cure" for anything. I recognized this after being sold $1000 per month of Avonex to treat my diagnosis of "MS" several years ago.
So who is interested in a cure, besides patients? The heaalth insurance companies. They have a tremendous incentive to see patients cured, minimize maintenance medications, and eliminate further medical care. Think of how many tens of thousands dollars of their money you have spent trying to diagnose and cure your illness.
Perhaps there is a way to enlist the support of the health insurance industry in working towards medicine's recognition of a cure.
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Bulls Eye Rash 1988, MS Dx 1999, Chronic Lyme Dx 4/04. No D in diet 9/13/04. NOIRs 10/15/04. Phase 1 12/1/04, Phase2 1/24/05, Phase 3 5/26/05. 1,25D=52 pg/ml 10/23/04, 40pg/ml 1/10/05 30pg/ml 6/16/05 24pg/ml 10/7/05. 25D=7ng/ml 10/7/05.
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Dr Trevor Marshall
Foundation Staff
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Posted: Tue Jun 14th, 2005 18:17 |
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Dsiebenh,
Unfortunately, health insurance is a service idustry. They make money from the margin - the gap between what they have to pay and what they collect in premiums. If the cost of medical treatments drops, then the margin, the amount of profit they make, also drops.
Look at the evolution of HMOs and you can see this very clearly.
The health insurance industry is not interested in cutting costs, only in maximizing margin.
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Posted: Wed Jun 15th, 2005 01:33 |
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cloudysunnee wrote, While I have read about possible reactions in patients with cardiovascular disease and the MP I didn't read anything specifically regarding congestive heart failure. I have CHF with an injection fraction of 30%. The cardiologist I see told me that he thought sarcoidosis was the culprit. I find the MP very intriguing and it makes me tear up with the possibility of getting better, of having a cure. I am so concerned, though, about the heart failure and MP.
Your doctor is wise to associate your congestive heart failure (CHF) with your sarcoidosis. This is, indeed, a serious development. The granulomatous tissue formed by the Th1 immune system response to the intracellular bacteria has interfered with your heart's ability to pump effectively. Your lung involvement also puts an extra burden on your heart as it attempts to compensate for the poor perfusion of oxygen through your fibrotic lung tissue.
The only way to resolve that inflammation and improve the function of your heart is with the Marshall Protocol. You will need to follow the MP very carefully to avoid an intolerable exacerbation of your CHF. Your doctor will know how to monitor the function of your heart and we can help him understand how to control the Herxheimer reactions.
He is encouraged to call Dr. Marshall or post in the professionals-only forum of this website to discuss your case if he needs more information.
The first phase of the MP is a learning process where you will begin to understand what symptoms are due to the Herxheimer reaction. These symptoms mimic your disease symptoms so any increase in symptoms on the MP points to areas of inflammation, some diagnosed and occasionally some that are new.
Keep reading the website so that you can help your doctors understand sarcoidosis. It's really not a very complex disease. Let us know if you have any questions not answered in the forums or by doing a site search.
Best,
Meg
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bjcarroll
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Posted: Wed Jun 15th, 2005 06:25 |
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Barb,
Thanks for your response. I did read the required reading section before I posted here. I also did a lot of research when I was first diagnosed, but don't know why I hadn't come across this website. I was actually directed to this site several days ago by someone who thought this was the only worthwhile site to go to. He was diagnosed with sarcoid in the brain, liver, spleen, skin and lungs. Apparently, I was the first person he had ever talked to that had been diagnosed with the disease.
Slowly, I am wading through the articles, but I guess I'm looking for something more. I've talked to my husband, who is a physician, about this site. He wants me to give him the link so he can take a look. I had no idea about how he would feel about me looking at this site, but I was pleasantly surprised. He agrees with the theory that these diseases are probably caused by bacterial infections.
My husband's own experience with a very stubborn infection last year, which they thought could be interstitial cystitis, convinced him even more. As a result of this infection, he has developed reactive arthritis. There are other reasons, too, why he believes that we will eventually find that bacteria and viruses cause a host of other problems.
I suppose that I'm very intrigued about Dr. Marshall's statement that sarcoid doesn't go into remission. This is where my husband and I disagree. He says he calls it more of a 'burnout', when the sarcoid has stopped progressing. It is useless to argue with him.
Is there any connection with other problems such as hypothyroidism, cholecystitis, heart arrythmias, fibromyalgia etc..? I've had my gallbladder removed, and know of several others who have too. Some had stones, and others like me, just had severe inflammation with lots of sludge. We've had hypothyroidism, fibromyalgia and other seemingly unrelated diseases. Is this just coincidence that we all have these unrelated diseases? I did read where the heart arrythmias and dry eyes could be caused by the elevated D. I'm looking for a thread on this site that may address these issues.
Thanks,
Barbara
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Sarcoidosis-lungs. Fibromyalgia. Asthma. Take flovent, serevent, singulair, albuterol, humibid, cardizem.Researching MP.
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Aussie Barb
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Posted: Wed Jun 15th, 2005 06:36 |
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Barbara
maybe this FAQ has some info for you.. Is the Marshall Protocol an Applicable Treatment for my Disease? has some links within it also.....
and this link to this thread within it may help to address your Q ... How many subjects on the MP have Sarc, Lyme, Cfids, etc.
Barb ...
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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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BARNEY
Moderator
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Posted: Wed Jun 15th, 2005 06:40 |
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bjcarroll,
I am originally from Ohio and relocated about 25 yrs ago to New Mexico.
I have had sarc for 40 yrs, also have had gallbladder out with lots of guck flowing into my body from it and 1 stone, and an abnormal wall in the middle of it. I have had a kidney removed due to cyst and female organs removed for same reason.
I have been on MP for 6 1/2 months and am doing well, ask your husband to look at my success stories on MP at all the improvements.
Hope this helps.
Barney (Bonita)
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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bjcarroll
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Posted: Wed Jun 15th, 2005 07:20 |
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Hi Barney,
I also see that you have asthma. I've had asthma since I was six months old. The pulmonologist told me that there is an increase of sarcoid cases in people with asthma and that controlling the asthma should control the progression of sarcoid. I don't feel that the high doses of inhaled steroids controls the asthma as well as it should (not to mention the candida in the mouth and throat).
Have you ever been told anything along these lines?
I will certainly have my husband look at your progress. He asked me why the Benicar and not just the doxy or minocycline. Been trying to read up on that tonight to give him a good answer. If he was as open minded about it this evening, maybe he might seek the MP for himself. According the list of things the MP helps, he very well may benefit.
I take it you are seeing good results with the MP. Does it help the migraines? I used to suffer with migraines, but they seemed to have disappeared. My husband gets them frequently, which I thought was unusual for a male.
Thanks for your reply.
Barbara
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Sarcoidosis-lungs. Fibromyalgia. Asthma. Take flovent, serevent, singulair, albuterol, humibid, cardizem.Researching MP.
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Aussie Barb
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Posted: Wed Jun 15th, 2005 07:32 |
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Barbara
re "He asked me why the Benicar and not just the doxy or minocycline."
see FAQ Is pulsed minocycline alone effective?
and re Doxy Dr. Marshall, A Question Re: ABX/doxy ....
and The Marshall Protocol -- simple explanations for patients and physicians
re Migraines... see also BENICAR SAFETY STUDIES Studies supporting the benefits of Benicar
Barb ...
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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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Dr Trevor Marshall
Foundation Staff
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Posted: Wed Jun 15th, 2005 07:32 |
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Barbara,
The 'asthma' usually disappears as your sarcoid inflammation disappears. All the Th1 diseases have a common pathogenesis. My presentation at Chicago "Can I Catch It" talks about how the lifetime sequence of infection seems to determine which disease syndrome becomes dominant.
..Trevor..
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BARNEY
Moderator
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Posted: Wed Jun 15th, 2005 07:52 |
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bjcarroll,
I did not have asthma until the 80's long after I had sarc.
I learned to avoid everything that set me off but then it got real bad and I had to find something that worked.
If you will go to success stories, you will see all the improvements I had on Phase 1, I am now in Phase 2/3 and I have had so many improvements that I can't even remember them all. Remember, out of site out of mind. Migranes and asthma and much more all gone. Osteoprosis in shoulder, ....no more pain.
My success stories will tell you all.
Hope this helps you decide. My life is only MP now and I would stake my life on it. That is how much I believe in it. Nothing else works, and sarc does not go into remission.
Barney
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64jointsarc77skinsarc80lungsarc81asthma/migranes
95rkidneyremoved(cyst)diabetic/gallbremoved,96
totalhyst(cysts,endom)01fibro,Benicar40/20mg&xtra
as needed,stage5,
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P.Bear R.N.
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Posted: Thu Jun 23rd, 2005 21:39 |
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I believe this link strongly supports Dave's analysis of "Big Pharmacy", and adds to it. It is titled "Multiple Chemical Sensitivities Under Siege" by Ann McCampbell M.D. http://www.getipm.com/personal/mcs-campbell.htm
good reading, P.B.
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