Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

Reply
 
Thread Tools Display Modes
Old 03-02-2009, 12:56 AM #1
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

PLEASE check out the link that Dubious posted re the Marshall Protocol, which includes the following:
Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist.

In reading his two articles, Dr. Marshall's main hypotheses are simple. (1) Vitamin D from sunlight is different than vitamin D from supplements. (2) Vitamin D is immunosuppressive and the low blood levels of vitamin D found in many chronic diseases are the result of the disease and not the cause. (3) Taking vitamin D will harm you, that is, vitamin D will make many diseases worse, not better. If you read his blog, you discover that the essence of the Marshall protocol is: "An angiotensin II receptor blocker medication, Benicar, is taken, and sunlight, bright lights and foods and supplements with vitamin D are diligently avoided. This enables the body's immune system, with the help of small doses of antibiotics, to destroy the intracellular bacteria. It can take approximately one to three years to destroy all the bacteria." That is, Dr. Marshall has his "patients" become very vitamin D deficient.

Again, Dr. Marshall conducted no experiment and published no study. He wrote an essay. He presented no evidence for his first hypothesis (sunlight's vitamin D is different than supplements). From all that we know, cholecalciferol is cholecalciferol, regardless if it is made in the skin or put in the mouth. His second hypothesis is certainly possible and that is why all scientists who do association studies warn readers that they don't know what is causing what. Certainly, when low levels of vitamin D are found in certain disease states, it is possible that the low levels are the result, and not the cause, of the disease. Take patients with severe dementia bedridden in a nursing home. At least some of their low 25(OH)D levels are likely the result of confinement and lack of outdoor activity. However, did dementia cause the low vitamin D levels or did low 25 (OH)D contribute to the dementia? One way to look at that question is to look at early dementia, before the patient is placed in a nursing home. On the first day an older patient walks into a neurology clinic, before being confined to a nursing home, what is the relationship between vitamin D levels and dementia? The answer is clear, the lower your 25(OH)D levels the worse your cognition.

Wilkins CH, Sheline YI, Roe CM, Birge SJ, Morris JC. Vitamin D deficiency is associated with low mood and worse cognitive performance in older adults. Am J Geriatr Psychiatry. 2006 Dec;14(12):1032-40.

Przybelski RJ, Binkley NC. Is vitamin D important for preserving cognition? A positive correlation of serum 25-hydroxyvitamin D concentration with cognitive function. Arch Biochem Biophys. 2007 Apr 15;460(2):202-5. Epub 2007 Jan 8.

These studies suggest that the low 25(OH)D levels are contributing to the dementia but do not prove it. Only a randomized controlled trial will definitively answer the question, a trial that has not been done. So you will have to decide if vitamin D is good for your brain or not. Dr. Marshall seems to be saying demented patients should lower their 25(OH)D levels. Keep in mind, an entire chapter in Feldman's textbook is devoted to the ill effects low vitamin D levels have on brain function.

Brachet P, et al. Vitamin D, a neuroactive hormone: from brain development to pathological disorders. In Feldman D., Pike JW, Glorieux FH, eds. Vitamin D. San Diego : Elsevier, 2005.

[Emphasis added.]
The point being, who needs evidence when you've got a compelling theory? Oh yeah, that and there's lots of evidence that Vit. D. deficiencies can be really bad for you.

Once more, the link is http://209.85.173.132/search?q=cache...lnk&cd=8&gl=us

Mike
fmichael is offline   Reply With QuoteReply With Quote
Old 03-02-2009, 02:32 AM #2
edj2001 edj2001 is offline
Junior Member
 
Join Date: Feb 2009
Posts: 7
15 yr Member
edj2001 edj2001 is offline
Junior Member
 
Join Date: Feb 2009
Posts: 7
15 yr Member
Default

Quote:
Originally Posted by fmichael View Post
PLEASE check out the link that Dubious posted re the Marshall Protocol, which includes the following:
Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist.

In reading his two articles, Dr. Marshall's main hypotheses are simple. (1) Vitamin D from sunlight is different than vitamin D from supplements. (2) Vitamin D is immunosuppressive and the low blood levels of vitamin D found in many chronic diseases are the result of the disease and not the cause. (3) Taking vitamin D will harm you, that is, vitamin D will make many diseases worse, not better. If you read his blog, you discover that the essence of the Marshall protocol is: "An angiotensin II receptor blocker medication, Benicar, is taken, and sunlight, bright lights and foods and supplements with vitamin D are diligently avoided. This enables the body's immune system, with the help of small doses of antibiotics, to destroy the intracellular bacteria. It can take approximately one to three years to destroy all the bacteria." That is, Dr. Marshall has his "patients" become very vitamin D deficient.

Again, Dr. Marshall conducted no experiment and published no study. He wrote an essay. He presented no evidence for his first hypothesis (sunlight's vitamin D is different than supplements). From all that we know, cholecalciferol is cholecalciferol, regardless if it is made in the skin or put in the mouth. His second hypothesis is certainly possible and that is why all scientists who do association studies warn readers that they don't know what is causing what. Certainly, when low levels of vitamin D are found in certain disease states, it is possible that the low levels are the result, and not the cause, of the disease. Take patients with severe dementia bedridden in a nursing home. At least some of their low 25(OH)D levels are likely the result of confinement and lack of outdoor activity. However, did dementia cause the low vitamin D levels or did low 25 (OH)D contribute to the dementia? One way to look at that question is to look at early dementia, before the patient is placed in a nursing home. On the first day an older patient walks into a neurology clinic, before being confined to a nursing home, what is the relationship between vitamin D levels and dementia? The answer is clear, the lower your 25(OH)D levels the worse your cognition.

Wilkins CH, Sheline YI, Roe CM, Birge SJ, Morris JC. Vitamin D deficiency is associated with low mood and worse cognitive performance in older adults. Am J Geriatr Psychiatry. 2006 Dec;14(12):1032-40.

Przybelski RJ, Binkley NC. Is vitamin D important for preserving cognition? A positive correlation of serum 25-hydroxyvitamin D concentration with cognitive function. Arch Biochem Biophys. 2007 Apr 15;460(2):202-5. Epub 2007 Jan 8.

These studies suggest that the low 25(OH)D levels are contributing to the dementia but do not prove it. Only a randomized controlled trial will definitively answer the question, a trial that has not been done. So you will have to decide if vitamin D is good for your brain or not. Dr. Marshall seems to be saying demented patients should lower their 25(OH)D levels. Keep in mind, an entire chapter in Feldman's textbook is devoted to the ill effects low vitamin D levels have on brain function.

Brachet P, et al. Vitamin D, a neuroactive hormone: from brain development to pathological disorders. In Feldman D., Pike JW, Glorieux FH, eds. Vitamin D. San Diego : Elsevier, 2005.

[Emphasis added.]
The point being, who needs evidence when you've got a compelling theory? Oh yeah, that and there's lots of evidence that Vit. D. deficiencies can be really bad for you.

Once more, the link is

Mike

Mike,

John Cannell is The Vitamin D Council Executive Director an organization he created himself as follows:

“…In 2003, he recruited professional colleagues, friends, and family for a board of directors and took the steps necessary to incorporate The Vitamin D Council as a tax exempt, nonprofit, 501(c)(e) corporation...”

I suppose that could cause many people to question if he is completely unbiased in his promotion of vitamin D. Look him up on the internet, I can't post links.

Note his first sentence: “...Dr. Trevor Marshall has two degrees, both in electrical engineering. Before I begin, I want to again remind you that I am a psychiatrist who works at a state mental hospital. In my duty to full disclosure, I must say that I have known a lot of psychiatrists in my life and a few electrical engineers. If I knew nothing else of a disagreement between two people but their professions, I would believe the electrical engineer, not the psychiatrist..."

As a PhD in EE Marshall has the capability to do in-silico studies at the molecular level and this has lead him to identify both agonists and antagonists to the vitamin D nuclear receptor (VDR) and forms the basis of his discussions and the MP science. He has arrived at the molecular pathway that regulates the concentration of the hormone 1,25-D.

The Vitamin D council and Crannel rely on subjective epidemiological correlations ripe with confounding factors.

Three peer reviewed papers about the MP have been published, three more are to be published in April. Marshall and colleges from the Autoimmunity Research Foundation have presented at science conferences in Sweden, L.A., Portugal, and China, last year. In April, Marshall has been invited to speak in Prague. Not a bad achievement for a protocol presented only 6 years ago.

BTW, it has been necessary to close the MP study site to new members because the overwhelming response of over 7000 members (in olny 5 years)was too much for the small group of volunteer staff. Information is still available at a sister site to answer questions but the main site is not taking new members.

As I said, neither Marshall nor myself have anything to gain. I am only sharing this information to sort of "pay it forward". I wish someone had alerted me about the MP three years sooner but I had to search for it myself.

Gene
edj2001 is offline   Reply With QuoteReply With Quote
Old 03-02-2009, 06:58 AM #3
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
Default Thanks for sharing!

Hi Gene,

Thanks again for additional insight into the Marshall Protocol. As you have indicated, it is not appropriate for everyone ... but how very wonderful that it has helped you. I have read some of the testimonials on the MP website and discovered many encouraging and remarkable results. Obviously there is lots of controversy surrounding this treatment, with some ready to attack both messenger and the message. I for one am thankful you are here and hope you hang around!

Thanks!
Jeanne
jenno is offline   Reply With QuoteReply With Quote
Old 03-02-2009, 10:47 AM #4
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

Dear Ed -

I am sorry if I overlooked your comments. As one whose pulmonary sarcoidosis went into spontaneous remission - as I am advised it does with aprox. 2/3 of Northern-European males - I'm wondering if you know of any studies (case-reports, etc.) involving the use of the MP with Afro-American females, for whom pulmonary sarcoidosis is often a death sentence?

And I certainly didn't mean to imply that you were supportive of the MP for any financial reason. My comment was directed at doctors whose practices seem to be based largely on providing unproven treatments across a wide range of specialties, without disclosing to their patients that these treatments have yet to be validated in controlled studies.

Mike

Last edited by fmichael; 03-02-2009 at 02:20 PM. Reason: correcting level of spntaneous remission
fmichael is offline   Reply With QuoteReply With Quote
Old 03-02-2009, 12:33 PM #5
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Quote:
Originally Posted by fmichael View Post
Dear Ed -

I am sorry if I overlooked your comments. As one whose pulmonary sarcoidosis went into spontaneous remission - as I am advised it does with aprox. 3/4 of Northern-European males - I'm wondering if you know of any studies (case-reports, etc.) involving the use of the MP with Afro-American females, for whom pulmonary sarcoidosis is often a death sentence?

And I certainly didn't mean to imply that you were supportive of the MP for any financial reason. My comment was directed at doctors whose practices seem to be based largely on providing unproven treatments across a wide range of specialties, without disclosing to their patients that these treatments have yet to be validated in controlled studies.

Mike
It's Roz not Ed,

Just a thought, Babesia (several strains) is a malaria like illness. Shortness of breath in the evening is a very common SX. The blood tests for Babesia are not accurate as well, maybe even worse than LYME tests. The M/P will not work for Babesia.
Hugs, Roz
  Reply With QuoteReply With Quote
Old 03-02-2009, 12:54 PM #6
buckwheat
Guest
 
Posts: n/a
buckwheat
Guest
 
Posts: n/a
Default

Dear Mike,

Here's your post on quinine, I believe it was from Ada's link. Do you think it might of been possiable that you had a HERX reaction? A herx. reaction can kill someone. If you were well, why on earth do you need a breathing machine at night? Please research Babesia, I beg of you. Much Love, Roz



I was given it years ago, and it was essentially useless. 100+ years ago it might have been the best drug available, but now we have far better.

There was, however, one interesting moment in which I accidentally aspirated a capsule into my lungs and was sick for weeks.
  Reply With QuoteReply With Quote
Old 03-02-2009, 01:29 PM #7
fmichael's Avatar
fmichael fmichael is offline
Senior Member
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
fmichael fmichael is offline
Senior Member
fmichael's Avatar
 
Join Date: Sep 2006
Location: California
Posts: 1,239
15 yr Member
Default

Quote:
Originally Posted by buckwheat View Post
Dear Mike,

Here's your post on quinine, I believe it was from Ada's link. Do you think it might of been possiable that you had a HERX reaction? A herx. reaction can kill someone. If you were well, why on earth do you need a breathing machine at night? Please research Babesia, I beg of you. Much Love, Roz



I was given it years ago, and it was essentially useless. 100+ years ago it might have been the best drug available, but now we have far better.

There was, however, one interesting moment in which I accidentally aspirated a capsule into my lungs and was sick for weeks.
Dear Roz-

I use the BiPAP machine for obstructive sleep apnea. This has nothing to do with the sarcoidosis, which has been clear for the last 2-3 years on CT lung scans, where it was first picked up, before being confirmed on biopsy.

And I'll take a look at Babesia, thanks.

Mike
fmichael is offline   Reply With QuoteReply With Quote
Old 03-02-2009, 03:21 PM #8
edj2001 edj2001 is offline
Junior Member
 
Join Date: Feb 2009
Posts: 7
15 yr Member
edj2001 edj2001 is offline
Junior Member
 
Join Date: Feb 2009
Posts: 7
15 yr Member
Smile

Quote:
Originally Posted by fmichael View Post
Dear Ed -

I am sorry if I overlooked your comments. As one whose pulmonary sarcoidosis went into spontaneous remission - as I am advised it does with aprox. 2/3 of Northern-European males - I'm wondering if you know of any studies (case-reports, etc.) involving the use of the MP with Afro-American females, for whom pulmonary sarcoidosis is often a death sentence?

And I certainly didn't mean to imply that you were supportive of the MP for any financial reason. My comment was directed at doctors whose practices seem to be based largely on providing unproven treatments across a wide range of specialties, without disclosing to their patients that these treatments have yet to be validated in controlled studies.

Mike
Hi Mike,

Yes, those reporting their progress on the MP study site are a diverse group from all over the world but English (at this time) is a requirement. However, there is some effort to translate the protocol into other languages. The latest being the Chinese who have asked Marshall to train the doctors at Western China Hospital how to conduct the protocol. Once again, you must find a doctor to support you if you plan to do the MP. That can be problematic because doctors are a skeptical lot when you try to tell them what to do. Especially to follow a protocol discovered on the internet (grin)
.
Are you familiar with the ACCESS study? It was conducted by the government to study sarcoidosis between the years 1995 – 2001. Ten major university medical centers participated and studied 215 newly diagnosed sarc cases.

Some of the study unexpected results (among others) were:
There were no cases of documented spontaneous remission,
The use of corticosteroids made some sarc patients worse and others who showed improvement relapsed when it was discontinued,
There were 5 husband and wife combinations where both had sarc. Sarc is so rare that there shouldn’t have been any. May indicate the disease is communicable.
Sarc does not discriminate; it shares its disease equally among all races and ages.
Over the study period, 50 in the study reported additional organ involvement.

Check it out on the internet.

Gene
edj2001 is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
buckwheat (03-02-2009), jenno (03-02-2009)
Old 03-02-2009, 04:22 PM #9
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
Default

Dear MsL,

Thanks for your most recent post. There is so much to look at and think about; and I can't wait until I have the time to sit down and really check it out.

Your thinking regarding RSD is very wise and healthy. Modern medicine does not know where to begin to help; and I totally agree that a common sense approach and research are the answers. This is not a hopeless illness, with alternative medicine and therapies providing lots of hope.

Some may think that I should change my name to Pollyanna. (Pollyanna –noun 1. an excessively or blindly optimistic person). Actually, it is a name that I would find to be quite endearing because throughout my daughter Sarah’s 5-year struggles with RSD … hope, optimism, and God’s promise that He will provide have been the essence of what keeps us moving forward.

This thread is evidence that there is so much we can learn from each other -- no longer being left to feel quite so blind in our quest for help. Again, I thank you for sharing your research.

Jeanne
jenno is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Mslday (03-02-2009)
Old 03-02-2009, 05:23 PM #10
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
jenno jenno is offline
Member
 
Join Date: Mar 2008
Posts: 124
15 yr Member
Default Communicable?

[There were 5 husband and wife combinations where both had sarc. Sarc is so rare that there shouldn’t have been any. May indicate the disease is communicable.]

Gene,

I pulled the above from your earlier post, as it is something I have been thinking about. When I posted this tread, this is exactly the kind of information I was searching for.

Interestingly, in my research of Lyme disease I learned that it is also believed by some that it too can be transmitted through semen and from mother to child through the placenta, a theory that most of us have never heard about. As my daughter has had numerous tick bites, and because of the experiences of others like Roz, we are doing all that we can to rule out the possibility that Lyme is a factor in her RSD.

You may recall that I mentioned in an earlier post to you that my Mom had Sarcoidosis; and although I do not want to be paranoid … for my daughter’s sake, I do not want to find out that we have been ignorant (uninformed). Wow, too much to think about! I will definitely be talking to her doctor about this, again in an effort to rule out any unknown factors.

I thank you so very much for taking the time to share your knowledge and experience with us.

Jeanne
jenno is offline   Reply With QuoteReply With Quote
Reply


Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Thryoid connection watsonsh Autoimmune Diseases 4 05-24-2014 09:02 PM
Do you think there is a connection? Twinkletoes Multiple Sclerosis 6 05-27-2008 01:00 PM
Some Research Finds Over 70% Of People With MS Have Cpn Infection Mark Hall Multiple Sclerosis 67 04-01-2008 08:18 AM
Autism and the God Connection wallyw1 Autism 5 07-20-2007 12:15 PM
Possible connection to PD BEMM Parkinson's Disease 3 10-31-2006 06:37 PM


All times are GMT -5. The time now is 02:42 PM.


Powered by vBulletin • Copyright ©2000 - 2025, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise (Lite) - vBulletin Mods & Addons Copyright © 2025 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

The material on this site is for informational purposes only,
and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider.


Always consult your doctor before trying anything you read here.