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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
Research Team
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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
Research Team
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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
Research Team
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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
Research Team
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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
Research Team
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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.......
____________________
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
Member in Phase 3
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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
Research Team
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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
Research Team
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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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