NeuroTalk Support Groups - Infection connection -- please research!

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- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Infection connection -- please research! (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/79147-infection-connection-please-research.html)

Quote:

Originally Posted by fmichael (Post 473424)

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

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

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

Quote:

Originally Posted by fmichael (Post 473580)

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

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.

Quote:

Originally Posted by buckwheat (Post 473616)

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

Check this out from Neurotalk:)

http://neurotalk.psychcentral.com/thread35024.html

Quote:

[I am a TBD Support Group Facilitator and one of the main tick borne diseases is Babesiosis. Babesiosis is a Babesia infection.

Just a heads up that locally we have had a dozen people over the years
with sleep apnea & Babesiosis and it has been noted in the literature as a symptom as well. So I would get tested for Babesiosis if you haven't been.
You probably haven't been.

It may be rare in some states- so far in California it is not rare- they did 3 complete serosurveys of communities (blood testing of whole communities)and found infection rates in people of 3.5%, 16% & 18%!! So it is basically an unknown epidemic in CA. on the East Coast it may be rarer but still worth ruling out because if your apnea is caused by this it is curable.

If you are in CA the strain is WA1, up & down the Pacific Coast it is WA1, stands for Washington 1, was found first in Washington State. So Oregon, WA, & CA you get tested for WA1. East Coast the strain is Babesia Microti.
Missouri there is MO1 and that is also in states around Missouri and in Kentucky and in Mass.

Just a note- it may be that your docs already tested you so just ask them, they may not know it can cause it though so it is worth asking!
Just a note,
Best wishes,
Sarah]

[I've been diagnosed with Babesiosis and Sleep Apnea. Can you tell me where you got the information that babesiosis can cause Sleep Apnea? I like to refer my doctors, so that they will give me the best treatment possible. Thanks, Rod.]

Dear Roz -

PubMed searches for "Babesiosis sleep apnea" and "Babesiosis obstructive sleep apnea" yield "No items found." Any other search term suggestions?

Mike

Quote:

Originally Posted by fmichael (Post 473338)

Dear MsL,

I am going through Dr. Blylock's website, and under the Blylock Wellness Report," came to a page entitled "Why Haven't You Been Told About
the REAL Cause of Heart Attacks?" at http://w3.newsmax.com/blaylock/22a.cfm and it's scarry stuff: basically you have a guy trained as a neurosurgeon, issueing histerical polemics against statins, and dismissing the thousands of papers that have found them to be of service, because "corrrelation does not equal causality." (Yes, but that's what advanced statistical theory is all about, something that I suspect have been applied to many of the studies he simply dismisses out of hand.)

But the big point I wanted to make is that the guy is apparently using his site to market a proprietary "Wellness Report":

Find out even more of the surprising truth about Coronary Disease, Strokes and Cholesterol — and many other issues affecting your health . . .

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Each month, you can count on The Blaylock Wellness Report to give you:

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In each issue, The Blaylock Wellness Report reports on the "real story" behind today's major health issues. Just like the truth about heart disease and cholesterol.

It gives you the honest "inside scoop" on diseases and health-related issues affecting you and your family (as well as your family's financial security): cancer, heart disease, diabetes, Alzheimer's, autism, Parkinson's disease, obesity and many other threats to your well-being, even your very life.

Usually, The Blaylock Wellness Report goes for $96 a year, an extremely reasonable $8 per month. And even at that price, it's seriously under-priced.

But as a special offer, we've lowered the cost by a full 50%. You have the risk-free opportunity to try out The Blaylock Wellness Report for a paltry $4 a month — $48 for the entire year!

Who wouldn't jump at this? After all, what else can you get for $4 these days? You can't even get lunch for that anymore . . .

PLUS, if you subscribe for two years right now, you'll get an even greater deal: $79 for 24 monthly issues — two full years of health-saving advice.

In addition to that, you sure can't beat the convenience. The Blaylock Wellness Report will be e-mailed to your inbox as a convenient PDF attachment, or you can access it easily via hyperlink. (You can also have the print edition mailed directly to you for only 50 cents additional per month, if you prefer — or even less, with your 2-year subscription.)

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You'll forgive me. The man come across as a scientist. More like someone you would find peddling snake oil. Ever here that great Tom Wait's song, Step Right Up?

Mike

For the sake of forgiveness, I wont take offense to your comments. But seriously Mike did you read the whole blog of the excerpt or did you just land on the badly marketed sales pitch? While I may not agree with the method Dr. Blaylock has chosen in order to receive compensation for his work, I do think his work should not be painted with such a wide brush as to be completely disregarded and labeled as a snake oil salesman.

I'm not a doctor, a scientist nor an academic. I am however a patient like many here who has been failed by modern medicine as it is currently being practiced by the majority of physicians. I have not read any of Dr Blaylock's work on statins so I can not comment on his research methods, nor do I think that is relevant to the topic at hand, that is rsd, and what is the underlying reason some of us are predisposed to this disease?

What I believe is more relevant to the conversation is that Dr. Blaylock has done some very important research on the effects of excitotoxins on the human body. This work should not be dismissed so easily, especially for those of us with rsd who are hypersensitive to many chemicals. Case in point an article of his that has been published in JANA the Journal of American Nutraceutical Association, a peer-reviewed journal on nutraceuticals and nutrition discusses an extensive review of literature on neurodegeneration in his article titled "New Developments in the Prevention and Treatment of Neurodegenerative Diseases Using Nutraceuticals and Metabolic Stimulants". Have a look at the section that discusses Inflammation, Cytokines and Autoimmunity where he describes " As we see, glutamate itself can act as a trigger for microglia activation leading to the release of numerous inflammatory cytokines, or some other event may trigger the process, such as a viral infection, Lymes disease organism invasion, or even heavy metal exposure." http://www.ana-jana.org/reprints/JAN...ockarticle.pdf

Personally I would never sign up and pay for a newsletter advertised in such a manner. I see where you are coming from with your comments. Upon further research into Dr. Blaylocks published accomplishments I see that he has taken a position on many conditions that fly in the face of most of modern medicines mainstream beliefs. I suspect he has been ostracised and ridiculed from the medical profession much like Dr. Barry Marshall and Dr. Robin Warren were for taking the views that he does. In my mind however and especially after reading the attached newsletter (no I did not pay for it)titled "Inflammation: The Real Cause of Diseases", I admire and applaud his courage and commitment to speaking his mind on this very subject. http://w3.newsmax.com/newsletters/bl...une2008_48.pdf

"CRPS/RSD is characterized in the acute stage by symptoms of regional
inflammation. This inflammatory response is also seen in the rodent chronic
nerve constriction injury model that is produced by loose ligation of the
sciatic nerve. Inflammation could be caused by cellular hypoxia and
diminished oxygen utilization. In the chronic stage, CRPS/RSD is manifested
as a more neuropathy-like disorder. It has been hypothesized that this
alteration results from the development of sensitization or plasticity during
the early inflammation phase of the disorder." http://grants1.nih.gov/grants/guide/...AS-03-120.html

Yes perhaps I too am stringing things together here, for the past few months now, since my surgery I have been researching the role of inflammation and how it affects my rsd. I have implemented and now follow an anti-inflammatory diet, introduced neutraceuticals, improved my exercise regime, and done much of what Dr Blaylock has recommended in his newsletter on Inflammation prior to reading it yesterday. I for one feel much better since I have changed my lifestyle, my rsd symptoms have decreased substantially. Personally I believe there is good value in what he has researched and written about here. Many of his recommendations make good sense to me and I think much of it can help to improve the lives of those of us inflicted by this nasty monster. If I have stepped up to the front of the line of the snake oil salesman than so be it!

MsL

Maybe worth looking into?

HI MIKE,

"DR. ROZ" IS OBVIOUSLY CONCERNED AND CARES DEEPLY ABOUT YOU. BECAUSE OF THIS, SHE WANTS TO MAKE SURE THAT YOU ARE NOT MISSING ANYTHING ... AND NOW IT IS MY TURN. I EXTRACTED THIS FROM THE QUOTE I POSTED IN THE BEGINNING OF THIS POST:

[Tiny "pleomorphic" bacteria have been photographed living within the cells of the immune system of sarcoidosis patients. Emil and Barbara Wirostko produced stunning electron microscope photographs of immune phagocytes each containing hundreds of tiny bacterial forms, around 0.01 to 0.025 microns in diameter, living in colonies within the very cells (phagocytes) which are supposed to kill these bacterial parasites. One of the Wirostko photographs can be found at http://www.autoimmunityresearch.org/wirostko-fig3.jpg It is important to understand that these bacteria are "coccoid" (round, and very, very small), 10 to 100 times smaller than the shapes these same pleomorphic bacteria will take when they enter the bloodstream.]

[We found that you can measure a hormone (in the blood) resulting from the Th1 inflammation produced by these tiny bacteria, and that it is elevated in Sarcoidosis patients. It is also often elevated in CFS patients, indicating that the inflammation of CFS is often very similar to that of Sarcoidosis.]

MIKE, I KNOW THAT YOUR SARCOIDOSIS IS IN REMISSION, BUT COULD IT POSSIBLY BE THAT THE BACTERIA DESCRIBED ABOVE ARE STILL PRESENT IN THE CELLS OF YOUR IMMUNE SYSTEM? IT IS ALSO INTERESTING THAT THERE IS A SIMILAR HORMONE LINK IN CFS PATIENTS. I REALIZE THAT YOUR DIAGNOSIS IS RSD; BUT IT IS AMAZING HOW MANY SYMPTOMS OVERLAP IN CHRONIC FATIGUE, FIBROMYALGIA, RSD, AND LYMES.

JUST SHARING BECAUSE I CARE.

JEANNE