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Morris W. Milnes
Member
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Posted: Sun Jun 12th, 2005 21:41 |
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| Paul, you are really right about one thing. If I were just trying to recover from some minor discomfort I might very well have given up. Actually I would probably never have started because I would not have been motivated to stand up to my doctors and then found another one. When you are fighting for your life you become 100 % motivated. I always planned to live to be 90 like my mothers side of the family, and when it was implied I might not make it to 55 I became very motivated.
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Diag: Sarcoidosis by median stenoscopy 1986. VitD tests 25D=16/ 1,25D=37/ Avoid Vit D 11/04/ Benicar 4QD/ Started Mino QOD 4/6/05 7/06 1,25D=21, 6/07 25D <7 Mag Citrate 1 tsp daily. Calcium 1200mg daily, Vit C 250 mg daily,Synthroid.1mg daily.
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rc45guy
Member
| Joined: | Wed May 11th, 2005 |
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| Posts: | 103 |
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Posted: Sun Jun 12th, 2005 22:55 |
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Trevor,
That is exactly what I did - I asked them what about cures, and not just "treatments". I asked why is the word CURE not in one of their objectives? Treatment usually does not mean a cure - treatment can even be as minimal as psychological help and nothing physiological.
Unfortunately, I doubt if they'll ask him this question, unless it is twisted in such a way that it either makes Dr. Zerhouni or the NIH look good. Neither of those two options would address the real question. (sigh)
Last edited on Sun Jun 12th, 2005 23:01 by rc45guy
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Dx - Sarc Mar03, CFS, DM1 Jan89, insulin pump, 6.8 HbA1c; No add'l meds; D tests May05:1,25D=55 & 25D<=5, avoiding light & D, NoIR 207s, Bolle100s, Phase 2
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 13th, 2005 02:42 |
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Update: Midnight EST Sunday 12 June
I have spoken with Belinda and Meg (in Denver), we have discussed their meetings with TPTB at the Denver conference, and we have all agreed that it is very important to keep letting Dr Zerhouni know that we cannot be expected to wait forever for the NIH to get something moving to help our community. We have confirmed that NHLBI still does not intend to give us a voice on the Trans-NIH Sarcoidosis committee. They will apparently need to be overruled by Dr Zerhouni if this important step is to be implemented.
** Please check back here after 11am EST on Monday, as I will call the Washington meeting organizers early Monday morning and get the final plans figured out on how it is best for us to get our voices heard***
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GeorgeinRollaMO
Advocate
| Joined: | Tue Aug 10th, 2004 |
| Location: | Rolla, Missouri USA |
| Posts: | 473 |
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Posted: Mon Jun 13th, 2005 04:27 |
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Trevor,
I sent the following email to conversations@kff.org
Dr. Zerhouni, what makes you think for one second that the NIH is doing a good job with your "roadmap of prevention strategies, diagnostics and treatments"? What "cures" of disease has any branch of the Federal Government's National Institute of Health system effected under your leadership, even after the expenditure of TENS of BILLIONS of dollars of the taxpayers' money each year? Why is the NIH not jumping for joy that someone has discovered what appears to be a "cure" for hundreds of persons that had a debilating, and most often, fatal disease, sarcoidosis, and asking the originator of this "cure" to be sitting on the Trans-NIH Sarcoidosis Committee to extend this "cure" to many others as quickly as possible?
Captain (Ret.) George W. Howell, Jr.
Rolla, Missouri email address given
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Borreliosis:7/14/04--125D=57,25D=61. Ben 9/1/04. Mino 10/5/04. 4/13/05--125D=58,25D=43. 8/17/05--125D=52,25D=36. April 06=125D=38,25D=29. 8/29/06--125D=37,25D=29. June 07 25D=23. Oct31'07,25D=19.
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scooker48
Member in Phase 3
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Posted: Mon Jun 13th, 2005 12:39 |
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to be sent via email very soon...
Dr. Elias A. Zerhouni,
You have now asked for feedback on how well the NIH is doing its job, and its future directions. Thank you for the opportunity to share with you my thoughts.
One of the foundations of science is open discussion. Through a process of consensus, the truth can be “sorted out.” Because there are so many people who claim to have been “cured” under the Marshall Protocol, these claims must either be substantiated or refuted. It is the only way the NIH can maintain integrity.
I strongly urge you to name Trevor Marshall and Belinda Fentor to the Trans-NIH Sarc Committee. If you fail to take this action, the public’s perception of the NIH spending BILLIONS of dollars will be viewed as deferring to “big Pharma”.
I understand that penicillin was not subjected to a random, double blind control study because everyone who took it got better. I look at the present “culture” of the NIH today and doubt that penicillin would be approved in the climate of 2005. Its one of the greatest drugs known to human kind
The Marshall Protocol MUST be fully studied in a manner that substantiates or refutes its claims.
Sherry M. Cook
U.S. Coast Guard (Ret.)
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Necrotizing granulomas biopsy 10/88; Dx 12/04 Sarcoid liver spleen. 2/2/05: VitD 25/VitD125 62. 04/07/08 D25 <7.0 L, Liver function normal 3/07; Wear NoIRs outside & for computer screen time. No K creme used.
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 13th, 2005 12:53 |
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George, Sherry,
Having spoken to the Kaiser Foundation PR person this morning, where she told me that it was essential for emails to be received in advance of the webcast (a rather curious procedure, I might add) I think that the tone of your letters is fine - Kaiser has a chance to condense the key elements out of the letters and then pose a question which allows Dr Zerhouni to give his perspective on the subject. I am not saying they will do that, but IMO, it is what should be done. So it will be interesting to see how they handle the situation. Lets hope they receive plenty more questions from MP folks today and tomorrow morning 
..Trevor..
ps:
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stewartk9
Member
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Posted: Mon Jun 13th, 2005 14:20 |
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PET and SPECT imaging are usefull
however, the interpation by the radiologist who may not have a strong background in this field miss diagnose
James Stewart,ASER
Interventional/critical care Radiology
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James Stewart
Senior Critical Care Consultant (trauma)
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 13th, 2005 14:24 |
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James,
That is true. The study of Chronic Lyme by Columbia Uni (Brian Fallon's study) is one of the best uses of SPECT in these chronic diseases that I have seen. They basically decided that rather than fitting the data to a physical model, they computer-analysed the activity to produce 'maps' showing regions of differing activity, then statistically correlated the 'maps' between the patients and controls. Much better idea than trying to visualize physical abnormalities with SPECT, IMO.
..Trevor..
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Tim
Member
| Joined: | Sun Jul 25th, 2004 |
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| Posts: | 14 |
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Posted: Mon Jun 13th, 2005 14:45 |
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Dr. Marshall,
Regarding your efforts to move medicine beyond symptomatic treatments toward actual cure, are you familiar with the American Center for Cures initiative? If not, you might like to contact Lou Weisbach at lou.weisbach@teamscape.net or Dr. Rick Boxer at rjbox@aol.com to see whether a collaboration is possible.
Tim
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 13th, 2005 14:57 |
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Tim,
I listened to the NPR interview with these gentlemen at URL
http://tinyurl.com/7gtoo
These people are still 5 or more years away from getting their initiative to fruition. We have a cure right now, a huge breakthrough, and should be able to get the NIH to help us to the next level.
IMO we don't need a Cabinet level 'Secretary for Cures' - Dr Zerhouni has the power and money to wave his hand and 'get it done.'
..Trevor..
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wytnez
Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 596 |
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Posted: Mon Jun 13th, 2005 20:34 |
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I think we need to post the question to Dr. Zerhouni over and over asking him why won't he over rule the NHLBI and appoint Trevor and Belinda to the Trans-NIH Sarcoidosis committee. What does he fear?
They can only ignore it some many times before they have to answer it. And transcripts of the webcast are available for review for those who will not be able to attend the live session.
I think instead of sending letters there needs to be direct specific questions. That is the only way we are going to be heard. And they need to be short and to the point. I just asked the question, why is the NIH afraid to appoint Dr.Trevor Marshall and Belinda Fentor to the Trans-NIH Sarcoidosis Committee since they represent the community. What do they have to fear? Cure? We will see if that is answered.
Saj
Last edited on Mon Jun 13th, 2005 20:38 by wytnez
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Ames
Member in Phase 3
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Posted: Mon Jun 13th, 2005 20:38 |
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I agree with Paulalbert concerning the fact that I believe it is not in our best interest to ask questions tomorrow that question the integrity or motives of the NIH.
Despite what we may privately think of the institution and the way it has reacted to MP innitiatives so far, I believe that it is probably best to try and get on Dr. Zerhouni's good side and attempt to make him view us in a favorable and friendly light.
I feel a little bit of flattery might even help. Something I have learned over the past years is doctors/institutions cannot stand to hear they are wrong. However, they suddenly become much more willing to give you a listen if you phrase your questions and concerns so as to put them in a good light.
This is a little exaggerated. But a sample question from me would probably be something like:
Hello Dr. Zerhouni. I have been following the NIH's research on sarcoidosis for the past few years and feel that you have a team of professionals working on this area of disease who are truly dedicated to understanding as much as possible about this rare syndrome. Recently I have heard of Dr. Trevor Marshall's success at treating Sarcoidosis with antibiotics. I admire you, because I know that one of your top priorities is to make sure that whatever information the NIH provides is in no way tainted or even slightly incorrect. Consequently, you must be very excited by the possibility that Dr. Marshall could join you sarc team and enrich an already knowledgeable group of medical proffesionals with some of his new discoveries on the subject so that the most complete and accurate profile of the illness can emerge. Am I correct?
Then see if he can come up with a good reason why the above statement isn't true...
If he does, answer:
Well you must at least believe Dr. Marshall should be allowed a chance to explain his findings and at least be given the chance to conduct some studies to validate his findings...I mean, I sense you are the type of leader who understands that the biggest faliure would be not to let him try......
Who knows if this type of questioning would work at NIH. But learning to approach doctors like this is the past has usually ended up getting me what I wanted!
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CFS/FMS/osteopenia/severe insomnia Non -MP meds: Gabitril (16 mg),Trazodone (150 mg),Tramadol (20 mg) for pain. Light: Noirs (outside and bright lights), thick layers, sunscreen
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 13th, 2005 20:55 |
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Ames,
That is an excellent approach, I think, and an excellent question.
As I said, I think Dr Zerhouni is a good man. Even the folks who have been putting out the sarcoidosis dogma are well-intentioned, they just need to be refocused back on science, rather than anecdote.
..Trevor..
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wytnez
Advocate
| Joined: | Mon Nov 29th, 2004 |
| Location: | Texas USA |
| Posts: | 596 |
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Posted: Mon Jun 13th, 2005 21:01 |
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Very well said Arnes. Did you post a question such as that one? If not maybe you should. I think a balance is what is needed. But we don't want to give the NIH a false pretense that we agree with what is going on. We have to be honest. And that can be done with diplomacy. We can respect them but we need to let them know that as a community and as Sarcoidosis sufferers that we deserve some answers.
Saj
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sarc lymph nodes. ph1 1/05,125D 33,25D 10,ph2 5/05,ph3 12/05,125D 21, 25D less than 7
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Dr Trevor Marshall
Research Team
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Posted: Mon Jun 13th, 2005 22:02 |
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Just a reminder
**EMAILED QUESTIONS HAVE TO BE SENT IN ADVANCE OF THE WEBCAST (before noon EST Tuesday) IF YOU WAIT UNTIL THE WEBCAST TO SEND YOUR EMAIL QUESTION, IT WILL NOT BE CONSIDERED**
Send emails to: conversations@kff.org
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cloudysunnee
Member
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Posted: Tue Jun 14th, 2005 01:58 |
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I have sent an email with a question for this webcam conference.
I am not a health care professional. I am a layperson infected with sarcoidosis. I am hopeful that I will find a doctor to treat me with this Marshall Protocol. I don't have the medical knowledge to use facts that I am only beginning to understand to state my questions and my concerns. That being the case my question is very much an emotional question, my disease is an emotional issue for me. I stated in my email that I only care about me and my disease. This is not true. I care about humanity, I love my fellow man. I wish all TH1 victims a cure and relief. But I believe that with sarcoidosis becoming a more well known disease due to Reggie White's death and Bernie Mac's affliction, it is an opportunity to focus on this "new" disease and bring it to the public.
I learned this evening that Reggie White's widow has MS. She stated in an interview that Reggie experienced an "attack" of sarcoidosis at the same time he experienced an "attack" of sleep apnea and that caused his death. I've written to Sarah White in the past and did receive a reply from her. I wonder if she knows anything about this Marshall Protocol?
Here is a copy of the text of the email I sent:
As a 44 year old woman with sarcoidosis that has lead to congestive heart failure to a profound degree, I ask for your help.
I am researching the Marshall Protocol as a treatment option to help me live. I see the testimonials, the research, the practicality of this method of treatment and find myself to be extremely concerned that I have to "find" a doctor willing to treat me using this protocol. My doctor should be able to help ME. I should not have to find the way for him to treat me, aiming for a cure, when this treatment is a valid option.
I have refused steroids as a treatment, the dangers outweigh the benefits. I don't want to cover up my symptoms. I want to cure my disease, remove my symptoms. It makes no sense to me as a layperson that the medical community understands the nature of this disease, and studies have pointed strongly to bacteria being the culprit, yet antibiotics are not even considered as a treatment option. The medical community maintains that steroids are the only option for the patient. That is the only treatment offered me by my internist and my pulmonary specialist.
Personally, while I feel for other TH1 patients, I truly only care about my sarcoidosis. I don't ask that you all endorse the Marshall Protocol for any and all TH1 diseases. Dr. Marshall himself is a victim of sarcoidosis and has used himself as a "guinea pig" in his quest for a cure. He is successfully experiencing remission. What more is there to say???
Please give this man and his research a chance to be heard, a chance to help me and so many others. I don't want to die because I can't find a doctor to treat me, or my insurance won't cover the expense. The possiblity of my dying is not an exaggeration, I am already halfway there because of what this disease has done to my heart.
Please allow Dr. Marshall and Belinda Fentor on the Trans-NIH Sarcoidosis Committee. They are both obviously extremely well qualified and have the best interest of the public at heart. The public deserves to have trust in the medical community once again, and that includes you all.
Thank you.
Diane J.
Diane: We edited out the email addresses and your second name, as we are uneasy about placing detailed patient information on the Internet. It is not the way that things are done at the NIH, and all our planning is being focused on some future cooperative efforts. I hope you understand.
ps: Great letter! Last edited on Tue Jun 14th, 2005 02:31 by
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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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DNStog
Advocate
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Posted: Tue Jun 14th, 2005 08:14 |
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Here's the question that I submitted.
Dr. Zerhouni
Considering the outstanding contribution the NIH has made and continues to make under your direction in the field of medicine and knowing of your own unquestionable dedication and integrity and that of your cohorts, I am at a loss for understanding why the NIH is so outdated in the information it provides our American doctors on the subject of Sarcoidosis.
Being one of several thousand Americans suffering from Sarcoidosis who has been told, “It will probably go away and never return; and then sorry, but the only known treatment is Prednisone. If you refuse it as treatment, there’s nothing I can do for you”, I am frustrated and saddened that so many innocent lives are being destroyed by this devastating disease and the medically recognized treatments. It is my hope that NIH, one of our country’s premier agencies will use Dr Trevor Marshall’s first hand experience and science of this disease and its cure without trying to reinvent the wheel. Most physicians do not even know the relationship between vitamin D and Sarcoidosis which could change the lives of so many right now. Why not have the NIH medical professionals work with and use Dr. Marshall and his staff to further the medically correct science of this deadly disease? I believe most doctors would prefer not to see their patients suffer the miserable, crippling side effects of long term Prednisone use and other currently recognized Sarcoidosis treatments.
Thank you for your answer.
Donna
Last edited on Tue Jun 14th, 2005 08:17 by DNStog
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Sarcoidosis/skin, joints, lungs, nerves, Raynauld's, uveitis, hypothyroid, sinus, wt. gain, Peradontal disease, GERD-hiatal hernia, breast ca 11/06, 25D7, Synthroid, Wellbutrin, eye vits, melatonin, Milk Thistle, Quercetin, Rx glacier, cover up, low lux h
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ShrnHml
Guest
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Posted: Tue Jun 14th, 2005 12:05 |
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Here's my email......
Dear Dr. Zerhouni:
To me, the NIH has always been one of the most prestigeous parts of our government. My feeling has been that it is relatively untouched by special interest groups
Now I am beginning to wonder. I have had Chronic Fatigue Syndrome for over 27 years. It has robbed me of my life by its effects ....medically, socially, vocationally, and emotionally.
For the first time, I see a ray of hope. Dr. Trevor Marshall has shown that this and other Th1 diseases, including Sarcoidosis, are caused by mycobacteria that set up houskeeping in the cells of our immune systems. But like all brand new ideas, there is trouble getting acceptance of his work at the highest levels. We, the patients, are finding great success with his protocol.
Dr. Marshall has not only discovered the cause of Th1 diseases; he has found a cure. Not remission......a CURE.
It is estimated that there are 800,000 people in this country suffering from Chronic Fatigue syndrome. If you add in all the other Th1 diseases, millions suffer and use up billlions in health care services.
It seems that the medical establishment is fixated on keeping the status quo. I understand that because the familiar is always more comfortable. However that does not lead to cures.....only treatment.
What can the NIH do to focus its resources more on cures than on treatments that, in my simply enable the status quo?
Sincerely,
Sharon T. Hamel
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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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LeAnne
Member in Phase 3
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Posted: Tue Jun 14th, 2005 14:17 |
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I listened to the live webcast presentation with Dr. Zerhouni. Why weren't any of "our" questions addressed? He talked about their failure in collecting data. Why is he being so hard nosed on istening to Dr. Marshall's Data? He talked about providing "the facts". There are new facts about these diseases. Why won't they give you the time of day? Is it pride, or is it a power struggle between his intelligence and Dr. Marshall's. He also said that the people and public need to be involved, because he wants to know about their disease, when symptoms start, ect... in order to better conduct research. We are trying to tell him and inform him of the conditions people suffer with and have been cured. I just don't understand. If I'm frustrated, I know you must be frustrated Dr. Marshall.
LeAnne
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Neuro-Sarcoidosis/lungs, spleen, nervous system, skin lesions, 125D66, MP 8/05, Ph1 3/06, Ph3 7/06, NoIRs, low lux home, cover up, 25D9 Sep07
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Dr Trevor Marshall
Research Team
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Posted: Tue Jun 14th, 2005 14:31 |
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LeAnne,
I have been beyond frustration for some time now Belinda, Meg, and I have been coming to grips with this lack of common sense throughout NIH for nearly two years now. It gives me no pleasure to see NIH repeatedly shoot themselves in the foot, but I truly know of no quick solution for their learning difficulties.
During the webcast Dr Zerhouni said "If anyone has a magic answer they can come and tell us about it."
Well, I did, on April 28th, to be exact. And NOTHING positive has happened since then. At this very moment NOBODY from NIH will return any of the phone calls I have been placing to them
IMO, He needs to be told that his organization is letting him down, badly.
I think the Kaiser Family Foundation also needs to be asked why none of your questions were posed. Why did Kaiser feel justified in totally ignoring ALL the questions you raised? Maybe it would be a good idea for you to call the organizer Tiffany Ford, at 202-347-5270, and ask her that very question
..Trevor..
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