Mike,

On a serious note, are you aware that inflammation and infection go together?

Hugs, Roz

Dear Roz -

I believe that infection may be a sufficient but not a necessary cause of inflamation, if that's what you're asking.

Mike

ps Signing out to run some errands: my wife driving.

Mike,

So in your opinion, why do you have inflammation? Hugs, Roz

It is speculated that injury, illness, infection, stress, hormones or a combination of these can trigger RSD; but once it takes hold, the trigger does not really matter unless it is perpetuating the illness.

For my daughter, Sarah, there was absolutely an injury that brought about her RSD diagnosis (as was the case with Roz). Sarah was one of the “lucky” ones who received a prompt diagnosis, amazingly within 10 days of an ankle sprain. Her bone scan showed “textbook” RSD and her symptoms were very typical. Although it does not appear to be a concern for Sarah, as is the case with most illnesses, misdiagnosis is always a possibility; thus making research all the more essential.

Of concern, however, is that she has an underlying infection that allowed her to develop RSD and is keeping her from fully recuperating. Sarah has benefited immensely from hyperbaric oxygen treatments, but her RSD returns when treatments are discontinued.

Treatment with hyperbaric oxygen has been used successfully in treating anaerobic infections and is recognized for such by The Journal of American Medicine. Lyme Disease is caused by an infection of the spirochete Borrelia burgdorferi. The B. burgdorferi spirochete is an anaerobic bacterium, meaning that the organism cannot exist in oxygen. Still, killing off the infection entirely is very difficult to accomplish. Some have found benefit in using antibiotics along with hyperbarics, an approach we have not tried.

All of us should be concerned about the overuse of antibiotics, and I AM IN NO WAY PROMOTING THE MARSHALL PROTOCOL. Still, it is very interesting that antibiotics are stopping the pain for some who suffer with chronic pain syndromes. Sarah’s doctor is an M.D., as well as a naturopath. She is being tested for Lyme Disease; but no matter the results of those tests, he believes that infection is involved. He is not proposing the use of lots of antibiotics but is investigating a naturopathic protocol for Lyme.

Mike, you are quite obviously a very bright and informed participant on this forum; and I am very interested in your opinions and research. I must admit that when I read that you had been diagnosed with sarcoidosis (thankfully that has resolved) that you might want to consider the possibility that the bacteria that has been seen in sarcoidosis and chronic pain sufferers could be affecting you.

As the mom of a 17-year-old daughter with RSD, I cannot sit back and wait until published studies are provided. It is likely that infection is not involved in all RSD, and maybe that is why some with RSD do not respond to hyperbarics?

I pray that we all continue to seek answers.

Jeanne

Hi all,

I am a new member and have read some posts in this thread. I started my research 10 years ago when I was diagnosed with sarcoidosis. I understand the feeling of despair of chronically ill people and feel the pain of the very sick people on this site. .

I have been treating my sarc with the Marshall Protocol (MP) for three years and have had significant improvement. I expect a complete cure in the next year or two.

It is actually the reactivated innate immune system that kills the intracellular bacteria infection. The low dose pulsed antibiotics are bacteriostatic protein inhibitors that block the 70S bacterial ribosome from making the proteins that they use to protect themselves from the Host immune system.

The MP is not easy, requires discipline, and must be approached slowly to avoid the immunopathology associated with the toxins released with the die off of infected cells.

Marshall is not selling anything. You must work with you own doctor to prescribe the medications.

Members of the Autoimmune Research Foundation have presented the MP science at several international medical/science/genomic conferences in the past two years. Links to transcripts and videos can be found at the MP study site.

Two peer reviewed papers discussing the MP science have just been published. Three more will appear in an April publication. Here is a link (below) to the first two along with an article by Amy Proal who is recovering from CFS.

Gene

Sorry, My post was returned. I am not allowed to post links. Maybe you can search by description.

Two peer reviewed papers have just been published on Elsevier's website:

Albert PJ, Proal AD, Marshall TG. Vitamin D: The alternative hypothesis. Autoimmunity Reviews, in press.

dx.doi.org/10.1016/j.autrev.2009.02.016

A full-text preprint is available from:
AutoimmunityResearch.org/transcripts/AR-Albert-VitD.pdf

And:

Proal AD, Albert PJ, Marshall TG. Autoimmunity in the Era of the Metagenome. Autoimmunity Reviews, in press.

dx.doi.org/10.1016/j.autrev.2009.02.011

A full-text preprint is available from:
AutoimmunityResearch.org/transcripts/AR-Proal-Metagenome.pdf

There are still 3 papers "in press" at the Annals of the New York Academy of Sciences. They have been peer reviewed and accepted, but are awaiting publication in the special issue "Frontiers in Autoimmunity." There is also still a paper in gestation, which has not yet been submitted.

And:

Article about the MP by Amy Proal:
bacteriality.com/about-the-mp

Dear Jeanne -

I apologize if my hokum remark came across as insensitive. (In the back of my mind, I suppose I was worried that it might: which means it probably was.) I'm sorry.

And I was frankly unaware that HBOT relied on an active infection model for its usefulness in treating CRPS. Speaking of which, there's a good article on HBOT written for the general reader by one Patricia McAdams on the RSDSA website, which you can link to here: http://www.rsds.org/3/research/hbot_mcadamshtm.htm. The article cites Allan Spiegel, M.D., a neurologist who explains the likely mechanism of action as follows:

Spiegel says that HBOT supersaturates tissues that have been deprived of oxygen because of the swelling of a limb. Specifically, saturation levels of oxygen in blood and tissues increase 10 to 20 times while in the chamber. Further, HBOT has a tendency to constrict vessels by about 15 percent, which causes a decrease in swelling from the edema present in most people with CRPS.

In fact, I have heard it speculated that HBOT works by actually forcing oxygen into the brain itself.

And I must have painted with too broad a brush if I suggested that I won't move off Square One unless presented with a double-blind controlled study. In preparing the article I did last year on RUL ECT as a possible treatment for CRPS, it became all too obvious how difficult (and expensive) it is to put together human studies that meet that standards of a major medical center's institutional review board. Still, that doesn't mean that doctors shouldn't try to move the ball forward for the benefit of not just their own, but all patients, when they have the opportunity to do so. Even a good case report in a peer-reviewed journal can be of enormous help to others.

This said, I suppose still I have a personal bias to disclose. My grandfather was an endocrinologist at the Mayo Clinic and was involved in a lot of the major public controversies in medicine of his day, from being perhaps the first high-profile doc in the country* to publicly support the concept of just pulling the plug on terminally ill patients in intractable pain - a radical idea for the Fifties on account of which he was actually barred from speaking at some medical schools - to writing against the food faddists of the late sixties, who claimed without any hard evidence that you could cure this condition or that with this sort of oil, etc. (Claims that were generally advanced without anything approaching a double-blind study, even in circumstances where putting together such a study wouldn't have been at all expensive.) In any event, after he retired he wrote a book he called "Americans Love Hogwash," and then through contacts secured the services of a top literary agent to peddle the book. Unfortunately, as funny and well supported as the manuscript was - or at least I thought so - the agent had to report his complete failure in securing a publisher after a couple of months of effort. Turned out that in the eyes of the publishing houses, general readers didn't want to shell out their time and money for a book only to be disabused of their hopes and dreams.

And as another aside, my wife and I are no longer seeing eye-to-eye on any number of things, that comes down to the same basic thing, whether or not it serves any purpose to believe in something just because everyone else does. (In the interest of keeping what friends I've got, I'll spare you the details.)

Now, as noted, there is a role for case reports in this world. Heck, my article on ECT consisted mostly in stringing maybe 50 of them together. But generally, you should expect to see them followed up with at least a small controlled study maybe three or four years later, unless where there's a reason why you can't do a double blind study: as in the case of ECT where I understand that everyone wakes up from the general anesthetic knowing whether or not they've been zapped. But I have seen over the last few years a good number of guys with proprietary interest in the positions they assert, having dozens of - generally unpublished - papers they've written on their websites, each of which just happens to circle back to the same tired old case report, if that. (True.)

Most good academic MDs that I know would have no problem, if the evidence changed, to abandon positions they had publicly exposed for years. (Reminds me of a couple of years ago, when a scientist at a symposia tried to trip up the Dalai Lama by asking him what he would do if science unequivocally disproved a major tenant of Buddhism, to which the monk responded, then Buddhism would have to be adjusted accordingly.) On the other hand, there are lots of folks out there who are so wedded to seeing their practice area as a series of marketing niches, not to be lightly disturbed. Some of the latter may practice out strip malls; others may be full boat professors at major private universities. (In the words of an old joke, we’ve already established what they are; now we’re just dickering over the price.) In any case, may we all be delivered from the hands of these learned men and women.

And may your daughter soon overcome the burden of this monster.

Mike

* By his own description – coming equipped with an outrageous sense of humor - he was "World's Greatest Doctor." And he proved it. On three occasions, traveling abroad to three different continents, he addressed and mailed a post card to "World's Greatest Doctor, World's Greatest Clinic, World's Greatest Country." And on each time, the card made it's way to his desk! (With the help, of course, of the folks in the mailroom, who knew whose joke it was.)

Dear Roz -

I've been working all day on this one, and have pulled lots of interesting stuff. Hope to post by Sunday.

take care,
Mike

There is a biological theory emerging in biological research that most if not all human disease is infectious.

That infectious organisms start a cascade of autoimmune responses which in some people begin inflammatory reactions.

Rheumatoid arthritis is one, and so is Type I diabetes. The latter is thought to be provoked following a viral illness. And there is a study out of Denmark that showed that bovine insulin fragments in cow's milk will induce Type I diabetes in children who have the genetic propensity to develop diabetes.

There is a genetic difference in some peoples' reactions to infectious disease. So that the trigger may only affect these genetically different patients.

An example is Campylobacter infections (gastroenteritis) may provoke GBS in some people.
http://www.ncbi.nlm.nih.gov/pubmed/9665983
So while infections may trigger, they do not really CAUSE the response...the response is the patient's own immune system going wonkey.

Mike, mrs. D. & Roz,

Thank you for your responses. As I have previously said, this forum has many incredibly bright individuals … with the three of you being excellent examples. I pray that we can continue on with healthy and considerate dialogue as there is much we can learn from the research and experiences of others.

Mike, hyperbarics does address inflammation, thus providing pain relief associated with RSD. I have recently been in contact with an individual involved in Hyperbaric Research and Development for 33 years. In his experience, RSD patients who find relief with hyperbarics do not require ongoing treatments. Because Sarah’s symptoms continue to resurface, he believes that infection is perpetuating her illness.

Mrs. D, it is evident that in many illnesses, infection has done irreversible damage; and when that is the case, building up the immune system and finding beneficial therapies is so very important. I am reading a very helpful book, Chronic Fatigue, Fibromyalgia, & Lyme Disease by Burton Goldberg and Larry Trivieri, Jr.. There truly are many answers to be discovered in Alternative Medicine.

Roz, your passion in raising awareness of Lymes is to be applauded. Thanks for caring enough to share your experience in hopes of helping others!!

It is important that we don’t get caught up in the panic of every new theory that surfaces, but sometimes a little hysteria is warranted and just may provide the help and answers we are all seeking.

Blessings,
Jeanne

I'll never forget a science show I saw on TV about 3 yrs ago.

It was about a little boy, about 3-4yrs old, who sustained a
closed head injury from a car accident. His behavior was severely affected, and he was very impaired as a result.
Traditional medical experts had nothing to offer this boy other than rehab.

His parents found a hyperbaric treatment center in Florida (I don't recall the doctor's name, sorry.) and he was given many treatments ..at least a dozen or more. His father had to go into the chamber with him, to keep him quiet and relaxed.

This boy recovered functions, speech, and could be considered normal after these treatments.

It was a very moving program. I have always been fascinated by hyperbaric treatments. They do them for burn victims, why not more often for others?