posted 17 March 2005 19:03               

I thought she was doing well.

Anyone know what went down?

posted 17 March 2005 20:23               

As if that's not enough, the MP site has made changes and they've deleted 2 of their forums. "Off Topic" and "Skeptic's Corner" have both disappeared. I still don't understand those changes, because they deleted and censored anything they didn't want to discuss anyway. There were some excellent topics and information that was lost as a result of the decision to do away with those forums.

With Paula and TXLM gone, they have lost their CFS and Lyme experts. There is no one else on the MP board staff who is thoroughly familiar with these two diseases. It has become a second Sarcoidosis board, because all the key board staff members have Sarcoidosis diagnoses, and all of the answers being given pertain to Sarc. They are very dismissive of any of the special problems which pertain either to Lyme or to CFS.

posted 17 March 2005 22:38               

It states that Paula resigned and that the topic is closed out of respect for her privacy. I saved this page to my hard drive, as well as the page that shows very clearly that she was "banned" and did NOT resign.

posted 17 March 2005 23:03               

So maybe TM didn't like the "negative" aspect of dealing with Lyme patients...???

posted 17 March 2005 23:04               

QUOTE:
I would like to state that I have been banned from the Marshall Protocol
website where I used to be a moderator. I have no further connection with
this website or with Dr. Trevor Marshall.

I was banned because I expressed concern for a patient who had been vomiting
three days, had elevated kidney tests, and needed IV fluids. This patient's
doctor had stated these things. When I encouraged this patient to follow the
doctor's directions, and that minocycline and Benicar both can affect kidney
function, my post was deleted.

When I protested the deletion of my cautionary message I was banned.

Dr. Marshall wrote me the following warning:
"There is no way that any of us should be talking in such a manner such as
might induce a mother to believe that IV fluids are either necessary or
desirable."

I replied on this:
"I did not suggest IV fluids. Her doctor called her and left a message on
her answering machine to BRING HIM IN FOR IV FLUIDS. I suggested she do that
NOW. This boy had extreme vomiting for three days, elevated markers for
kidney malfunction which had existed in the past, and needed electrolytes.
He remained so dizzy he could not stand. I gave this woman NO advice her
doctors had not already given her...Yet my post was the one deleted."

I am still on the Marshall Protocol and had encouraging conversations with
doctors at the Chicago conference. I will be writing an article on this for
the Wisconsin CFIDS organization.

I feel that in order to protect myself and other patients I must distance
myself from the MP website. I find that I frequently disagree with the
advice given there, and several of my posts have been deleted in the past
because of this.

I hear it has been posted at the MP website that they will not discuss why I
was banned to protect my privacy. The information I have stated above is the
reason I was banned. I am not trying to protect my privacy. They are trying
to hide the reason why I was banned.

Paula Carnes

posted 17 March 2005 23:09               

No wonder we have such problems with Lyme disease being diagnosed and treated when we have to deal with doctors like that....

posted 17 March 2005 23:44               

I had promised to stay on as a Board Staff member until after the Chicago conference had ended because I had been instrumental in inviting one of the keynote speakers, Dr. Lida Mattman, to speak, as well as persuading several medical professionals from the RA community to attend the meeting as VIP guests.

My continuation on the MP Board Staff following the conference was contingent upon our ability to resolve several problems which have existed at the MP website to our mutual satisfaction. Unfortunately, however, there was no agreement that any of my concerns were considered to be significant or worthy of further discussion.

I find it unrealistic to try to contribute anything meaningful or useful in an atmosphere of such heavy censorship, where my messages were sometimes deleted or, even worse, where my messages were subject to being edited WITHOUT ANY NOTICE that such editorial changes had occurred.

Before I had a chance to compose my letter of resignation, however, I discovered much to my great relief that my status had already been changed for me, without the necessity of a formal request from me to initiate this change.

This change in my status at the MP website will allow me more spare time for participation in other groups where I can speak my own mind freely and without any inhibitions or sanctions.

posted 18 March 2005 00:09               

I want to clear up a not uncommon misperception about Trevor Marshall's credentials.

He is not a medical doctor (MD) Dr. He is a PhD Dr.

I believe that this is clear in his publications but it is not prominently posted anywhere at mp.com and is a source of confusion for some people.

posted 18 March 2005 00:13               

<< The following message was deleted from marshallprotocol.com after about 30 minutes. Since I am still getting messages from people who don't know that I am no longer board admin there, I am posting messages at other message boards with hopes that word will spread. Thank you.

<< I hope that Board Staff will indulge me this one message:

Most of you do not know this, but I am "Suzanne", former "Admin" for this site. In some recent correspondence with board members, it has come to my attention that it is not generally known that I am no longer the admin for this board.

It is important to me that board members know that I resigned my position here on or about Feb. 1, 2005, and no longer am associated in any way with Board Staff [at marshallprotocol.com].

Anyone who needs help with board operations should correspond with the new admin who now controls the "Admin" account.

My email address is visible in my profile for anyone who would like to correspond with me privately about non-board related issues.

Thank you,
Suzanne/"pepper" >>

>>

posted 18 March 2005 09:05               

Please note that, while we are very critical of the way mp.com is run, we still believe that the protocol has merit, even if it might not yet have totally evolved.

The jury is still out, but there are a number of open-minded, forward thinking doctors who are on board with this, along with the many who are not.

Sounds to me like it is no different than the situation with other current Lyme treatments?

As someone said, let's not throw the baby (science and protocol) out with the bath water (mp.com).

posted 18 March 2005 10:17               

I thought you were still the admin, because it's the same contact address you used, marshallprotocol2@yahoo.com . Did you turn that address over to someone else?

Who's "officially" administering the board now?

penny

quote:

---

Originally posted by tickedntx:
I posted this elsewhere earlier today but it seems appropriate to post it here, too:

<< The following message was deleted from marshallprotocol.com after about 30 minutes. Since I am still getting messages from people who don't know that I am no longer board admin there, I am posting messages at other message boards with hopes that word will spread. Thank you.

<< I hope that Board Staff will indulge me this one message:

Most of you do not know this, but I am "Suzanne", former "Admin" for this site. In some recent correspondence with board members, it has come to my attention that it is not generally known that I am no longer the admin for this board.

It is important to me that board members know that I resigned my position here on or about Feb. 1, 2005, and no longer am associated in any way with Board Staff [at marshallprotocol.com].

Anyone who needs help with board operations should correspond with the new admin who now controls the "Admin" account.

My email address is visible in my profile for anyone who would like to correspond with me privately about non-board related issues.

Thank you,
Suzanne/"pepper" >>

>>

---

posted 18 March 2005 12:50               

I don't believe that's the case.

Protocols don't 'evolve' by themselves, but are adjusted as those responsible for their creation learn and grow from experience.

In this case, the protocol's creator not only refuses to learn himself but works overtime to 'protect' mp.com members from being contaminated by outside sources of information.

If the Protocol was 'evolving', the D-deprivation element would have been dispensed with for most patients, whose measured serum levels of vitamin D and its active metabolite have been normal or deficient, not toxic and dysregulated.

If the Protocol was 'evolving', instead of lashing out at those who report poor results and accusing them of non-compliance, the site staff would re-evaluate their starting assumptions in light of empirical results.

If the Protocol was 'evolving,' the last thirty years of research on 1,25-D as an immune modulator would not be excluded from discussion on the mp.com website. Most of that research concerns the ability of 1,25-D to both enhance immunity to cancer and bacteria and selectively suppress those immune responses implicated in auto-immune disease.

If the Protocol was 'evolving,' evidence that Benicar suppresses aldosterone, a hormone that is already suppressed in many chronically ill people, would be acknowledged, and appropriate warnings and workarounds added.

It was for the high crime of posting a Benicar study showing significant reduction in aldosterone after 6 months (at the standard hypertensive dose), that I was banned from the mp.com site.

If the protocol was evolving, a succession of recent studies showing the vitamin D deprived have significantly higher cancer rates, as well as rates of MS and other chronic inflammatory diseases, would have been accurately conveyed to members, many of whom are already at elevated risk for these conditions.

If the protocol was evolving, it would not continue to rely on an obsolete range for 'healthy, normal' 1,25-d in the Merck manual, ignoring the upward revision in both the level of that metabolite our bodies need and the level our bodies can safely tolerate.

If the protocol was evolving, the fact that out of 'over three hundred' Sarcoidosis patients who've begun the MP 'maybe 50, maybe 20' have stuck with it and are registering improvements would strike a note of caution.

Never, to my knowledge, has a protocol with such flimsy results against its original target disease been rewarded with broad application to a legion of other ills.

If the protocol was evolving, the response to questioning over time would have become more relaxed, confident, not more shrill and intolerant.

If the protocol was evolving, when researchers whose work Marshall has cited point out that he's misconstrued their findings, he might actually listen.

The protocol is not evolving, because it's assumptions are so rigidly maintained that anything which calls them into question is immediately rejected. Fiddling with antibiotic selections in the later stages of the protocol does not qualify as 'evolving.'

Indeed, these changes have been used to intensify the secrecy surrounding the MP and intimidate questioning members by threatening to withhold the latest secret formula from their doctors if they don't behave like good compliant little sheep.

Araneli recently suggested the protocol's rigidities may be necessary for an 'experiment' of this kind. Araneli is unaware, I think, that Marshall rages at any suggestion that he is involved in an 'experiment,' and explicitly rejects the notion that he is bound by the ethical and procedural norms which experimental treatments are properly subject to.

Several times during my stay on the board staff of mp.com, I suggested to Marshall that this was, after all, clearly experimental, and that publically acknowledging that was the most appropriate way to respond to skeptics. For my efforts, I was told to shut up.

The protocol is not evolving, most critically, because the careful selection and monitoring of participants that allow a trial to be meaningful have been rejected by Marshall from day one.

Instead of gathering information that would allow an ongoing assessment of the protocol's performance, Marshall used his support staff's time to issue uniform, generic responses to patient queries. The staff members who have stayed on embrace that role, and have by now posted the same, un-evolved Marshallisms on that site many hundreds or thousands of times. These are seldom actually responsive to patient questions.

When a very thoughtfully designed survey was introduced by a site member to collect that information, Marshall used harrassment and legal threats to shut it down. Not only is the information not collected and analyzed by the staff, but any attempt by members themselves to do so is verbotten.

You cannot adapt to information you go out of your way never to see.

The protocol is also not evolving because at the very point of entry, when 'candidates' submit their D-test results to Mangin for 'interpretation', the obvious fact that most do NOT have excessively high 1,25-D levels is cast aside as irrelevant.

Members will find that any subsequent developments that do not fit the MP orthodoxy will be just as blithely dismissed.

The MP is not evolving, but grows more narrow, inbred, and non-responsive with every passing day.

The only sense in which aspects of the MP are evolving is that some patients, who know pathological rigidity when they see it, have had the courage and wisdom to do what the protocol's creator will not, and adapt those elements which might be useful to their own needs and understanding of the relevant science.

Many of them posted on the old Infection and Inflammation site, declaring superior results with lower doses of Benicar, or higher doses of antibiotics, or both. For that reason alone, the I & I site could not be allowed to continue.

I am glad to see that others who have been involved at a staff level with mp.com are now speaking more candidly about problems in how the site is run. But the problems go a lot deeper than that. The site problems aren't just a product of one man's ego and bad temper.

The censorship, the blaming attitude expressed towards patients who report poor results, the need to shut down critical discussion not just within mp.com but in other public forums...these things arise naturally out of the original act of egoism that declared this weakly established remedy for Sarcoidosis a broad cure for every 'autoimmune' disease known to man.

posted 18 March 2005 14:06               

quote:

---

Originally posted by tickedntx:

I want to clear up a not uncommon misperception...

He is not a medical doctor (MD) Dr. He is a PhD Dr.

---

Not only that, he has a degree in electrical engineering, and apparently has spent most of his time working with computers and trying to unsuccessfuly run a computer related business, Sarc Systems. It went bankrupt and was involved in a number of legal actions. See: http://tinyurl.com/3ksdr

or: http://www.sec.gov/Archives/edgar/data/843650/0000843650-00-000001.txt

Most people with this kind of PhD rarely refer to themselves as "doctor" but it's his perogative.

posted 18 March 2005 14:16               

I have my suspicions about who replaced me as Admin but do not know for certain so prefer not to speculate publicly.

Suzanne

posted 18 March 2005 16:16               

I believe that other scientists/medical professionals will evolve the protocol if Marshall does not.

This may be wishful thinking, but based on attendance at his recent conference, I believe that there is growing (if currently limited) interest in his work in the medical community, and am hopeful that this will happen.

Only time will tell.

posted 19 March 2005 18:14            

Thanks for posting Paula's comments with her permission! I hope you got a private email from me today with info.

I have asked for last 2 days specifically what the first name of the new admin is & twice; they would not address it, and deleted that out of my post to them.

Someone mentioned a physical therapist I believe above who WENT to the conference; is that Reenie? I believe she is the one who did that type of work prior to lyme.

I applaud you & Paula for going to the conference, but then Paula didn't know then she was banned, correct?

Suzanne, please answer this publicly on this board also.

Are the PRIVATE MESSAGE area on MP private between sender/receive OR do other board members & admin have acces to everything there? Thanks for explaining how that worked.

That was a wonderful feature I enjoyed daily. Thanks for answering my questions.

You were ONE IN A MILLION over there; your management skills & tact were the best I have ever encountered on a message board. Atta girl Suzanne/Pepper.

Bettyg, Iowa

posted 19 March 2005 18:32               

:-) I am most definitely not Tx Lyme Mom! I'm not even a mom! :-)

To the best of my knowledge, Reenie was a massage therapist. On the conference brochure/web site, it said "MT" after her name. I assume it means "massage therapist" but am not certain. Yes, she was at the conference. (I did not attend.)

Private messages at mp.com are accessible by administrators, but not Board Staff.

posted 19 March 2005 19:29               

Some researchers and studies suggest that Lyme can evolve into MS, with that trademark type of auto-inflammation that attacks myelin and causes the death of axons, neurons and other central nervous system cells.

Low vitamin D is a known risk factor for MS.

For several months, after first becoming acquainted with the Marshall Protocol, I adhered to the ban on sun exposure, bright light in the eyes, and dietary vitamin D.

Then last December I had my 3rd brain MRI. For the first time, the report came back citing marked brain volume loss and atrophy.

My symptoms are more of a match symptomatically with MS than they were a year ago.

I also developed much more severe arthritic pain in my knees over the same period.

I should note that I did not take MP doses of Benicar (no physician I spoke with would even consider such doses), but did take a higher daily dose of Diovan for blood pressure than was used and found effective in the first version of the MP.

There were multiple posts by Marshall and other staff indicating that D-deprivation was therapeutic in itself for "Th1 diseases."

The point is that if I had known that there is a huge body of research implicating D deficiency in the onset and progression of our illnesses, I would never have risked Marshall's experiment.

I can't know that the months of D-deprivation are a culprit in my decline, but I also can't know that they weren't.

Others had adverse responses on the full protocol that were more acute and debilitating than mine. I've talked to several former MP patients who feel that they were set back, and have not yet recovered the degree of health and well-being they started out with.

The relationship between vitamin D and MS is widely known. The MS Map of the United States, if you haven't seen it, will absolutely put to rest any doubts you have about the case for this relationship - the vast majority of cases occur in areas with long "vitamin D winters" where UV exposure is too low for vitamin D synthesis to occur.

Indeed, Trevor Marshall's favored authors on the subject of vitamin D, Adams and Lemire, are well aware that low vitamin D is a risk factor for MS, and believe that vitamin D is protective against a number of other 'autoimmune' diseases, including Lyme arthritis.

Marshall does not disclose this information, nor does he allow it to be posted to the website.

One of the fundamental principles governing innovative medicine is informed consent. Patients should not be encouraged to embark on an experimental regimen without being aprised of all relevant risks.

It is my strong belief that if most patients with CFS, RA, Lyme, FM, etc, were apprised of what is now known about the immune-modulating role of vitamin D and its metabolites, they would not choose to embark on a sustained regimen of D-deprivation.

Not only does the active metabolite of vitamin D increase bacterocidal activity in infected macrophages (the very kernel of the 'Marshall Pathogenesis' is infected macrophages), it has been shown in vitro, in vivo, in animals, in humans to contain and limit auto-inflammation. This is the exact opposite of what patients on the mp.com website are told.

One could critique these findings about vitamin D, but they reflect the emerging medical consensus, and to pretend they do not exist is inexcusable.

(I am very well aware that there are patients, particularly those who have granuloma forming diseases, who do in fact need to limit vitamin D - it is not a one-size fits all proposition, and that is precisely my point).

Then there is the FDA data which according to Marshall certifies the safety of taking 3 to 4x the recommended maximum dose of Benicar. (Actually, the mp site's recommendations for Benicar use during 'intolerable herxes' gets you to 6x the maximum recommended dose).

In fact, no one was tested at anything like 160mg of Benicar daily OVER TIME; the study the mp.com site refers to was much shorter in duration than the 18 to 36 months specified by the protocol.

Studies like this have to balance the need to determine safety against the need not to subject human test subjects to unnecessary risks. So there were animal studies, notably a two year rat study that found 'dose-dependent' increases in kidney tumors and tubular cell hyperplasia.

The FDA formally found those results "relevant to man." The same report that discusses them concludes by advising that a starting dose lower than 20mg be established, and that this be the recommended starting dose for all patients.

Patients taking Benicar at the standard dose have had kidney problems. A very suggestive animal study indicates that ARBs generally may actually increase the risk of renal fibrosis. More than one MP patient has reported kidney pain, and some have had persistent lab abnormalities as well.

MP patients who don't experience any of these problems and perceive some benefit can be glad. That does not make the protocol any more 'safe and effective' for those who don't respond or respond negatively.

But the operators of the mp.com site are unusual in their insistence that problems NEVER arise from the protocol itself, only from patients who fail to adhere to it.

This dishonest and dangerous attitude is not excused by the evangelical fervor expressed by Marshall and some of his more ardent followers. Indeed, Messianic pretensions are always, for me at least, a warning sign of imminent danger.

posted 19 March 2005 20:13               

quote:

---

Originally posted by TX Lyme Mom:

This change in my status at the MP website will allow me more spare time for participation in other groups where I can speak my own mind freely and without any inhibitions or sanctions.

---

posted 19 March 2005 21:20               

I've learned quite a lot during my departure from LymeNet while I was spending almost all of my spare time learning about the MP program and helping to mentor patients at the MP website -- so it was not time wasted at all.

This is just a quick note to say that I never really intended to stay away from LymeNet for so long, but there just aren't enough hours in the day to keep up with everything that there is to learn out there on the big wide internet.

posted 20 March 2005 12:27            

Tickedntx aka Pepper, former MP admin is Suzanne... and not the same person as TX mom..

TexasLyme Mom, former MP board Staff is the real-life mom of Lonestartick (who is a Lymie & former MP patient).

Is that right?.. I guess not that it really matters, but since it's come up..

I know Texas is big, but do you'all live in the same town?;-)

posted 20 March 2005 15:13               

You got it right. : ) Nope, none of us live in the same cities unfortunately.

Hi Betty,

I'm almost 90% certain that Reenie is not a Physical Therapist (P.T.). I believe she is a Massage therapist (M.T.? or L.M.T), but you might ask her.

I have a few close friends who are physical therapists - Note that this is different from Physical Therapy Aides. The programs my Physical Therapist friends completed were nearly as competitive as medical school. They each spent a year with a cadaver just like medical students do. One of my friends has a master's degree and another has a doctorate degree (D.P.T.) in Pysical Therapy. Their education is much different from the limited requirements for massage training.

One must take undergraduate courses in Biology, Anatomy & Physiology, Chemistry, and Physics prior to being admitted into a Physical Therapy program here in Texas. It is very competitive, a high GPA (grade point average) is required to be admitted into a P.T program.

Massage therapy, on the other hand, does not even require college course credits. The certification process usually requires about 6 months of training.

It takes years of at university in order to become a Physical Therapist, and only months at a massage school in order to become licensed. I hope this helps. http://stats.bls.gov/oco/ocos080.htm

-Lonestartick/Kris