I thought she was doing well.

Anyone know what went down?

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.

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.

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

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

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

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.

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.

<< 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" >>

>>

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).

I thought you were still the admin, because it's the same contact address you used, [email protected] . 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" >>

>>

---

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.

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.

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

Suzanne

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.

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

:-) 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.

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.

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.

---

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.

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?;-)

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

Do you have any thoughts on this? Also, I know Barb Peck may have some good ideas. Thanks for any input.

Paula Carnes

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.

Firstly,
An assumtion is being made that the adverse reactions on the low dose abx therapy is a herxheimer.
I have repeatedly questioned whether these reactions are from bacteria die off (and the subsequent immune reaction.. i.e herx) or something else entirely. IMO this question hasn't been answered.

Secondly,
The literature supports that Benicar (and other ARBS,) , have immune modulating properties. It's ptetty well accepted, that for chronic inflammatory conditions, a modulator modulates to improves the condition by reducing the inflammation by various mechanisms.
But you're lumping Vit D restriction along with angiotensin II receptor blocking making certain assumptions and somehow tieing it in with herxheimer.

As far as low dose abx:
I have never under stood the theory put forth about very low dose Mino (between 25-100mg 3 times per week) and the statements about how "as it degrades from the tissues" it kills bacteria... and I beleive that statement underlies much of the assumptions made about low dose equalling herxheimer.

Maybe now that you and TxLyme mom are back here you can explain some of these assumptions.

And finally- the term immune modulating just means that the substance changes in some way the way the immune system is currently operating...good or bad..
And with the dual role alot of substances play in the body - one cannot assume that the immune modulating effects of D resitriction and off-label high dose ARBS are going to be good for everyone or in every disease or syndrome.

Barb
edited to correct spelling- gotta use spell check!

Thanks for the clarification; I was quoting this from my bad "brain fog" memory.

Paula, WELCOME to the lymenet board! I'm very sorry about how you, TLM, and Suzanne were all treated by Trevor. He is rude enough to members, but to be that way with the VOLUNTEER board staff is unforgiveable.

Paula, you mentioned vit.D, etc. and I have this question for you/other former board moderators:

My last D tests were 20 on 25; 21 on H125.

Sorry, again I'm doing this from my poor memory & can't remember the proper names...uffda.

My LLMD recommended that I start taking a vit D supplement. I have NOT. Wearing the NOIR sunglasses really help my eyes which then has lowered the 125 D; right?

I know I have NEVER been on the MP treatment program. I'm on my LLMD & VET Dr. Scott Taylor's treatment plan. Scott has lyme & he is the reason why I tested for lyme last summer.

Would any of your moderators take the D or NOT as I have chosen to do at this point.

I am NOT getting any better on treatment plan I'm on. I wouldn't say I'm much worse, but the fatigue is awful. I even tend to fall asleep while on pc.

QUESTION: tomorrow I go see my LLMD. I feel I should be tested for co-infections since it was NOT done earlier.

Do I test for all? Would you recommend MDLabs which accepts most insurances?
=====================================

We've had countless expenses with my neuro psy testings last Dec. & my Jan. sleep apnea study plus buying the cpap machine which is NOT working! I got a humidifier based on folk's input from here.

I stated I wanted a HOT/WARM AIR one only; what I received blows COLD arctic air at me all night long. Cpap machine has a meter reader on it, and does NOT count at least 50% of time I sleep with it on.

I've complained for the entire last 3 weeks. Gotten the run around including to MICROWAVE the water first, which I did that lasted 11 minutes staying warm

Will talk to supervisor tomorrow.

I apologize Suzanne for HIJACKING your post, but know that Paula, TLM, Paul, and you will most likely read this post.

First of all, let me state that I'm not convinced that the excess light exposures trigger as many of the so-called "Herx" symptoms as it is being claimed that they trigger -- but I'm also not 100% sure that they don't. My vote is still out on that whole issue, based on my second-hand (but close-up) observations of what I've seen our daughter go through.

She and I usually agree on almost everything, but we are still trying to decide what to make of this paradox, and we have been batting it around and trying to sort it out, based on her various reactions during the last 7+ months on the MP program. I'm not sure if she and I are in total agreement yet on our interpretation of everything or not, so please take what I am saying here with a grain of salt.

We both reserve the right to change our minds about our interpretations of why excess light exposures seem to trigger so many unpleasant symptoms, as we continue to accumulate more and more experience with it. Maybe the dogmas being expounded at the MP website about this are right, but until we can verify this effect by means of our own experience, we are reserving judgement on its validity.

OK, now to the meat of the matter. Lowering the secosteroidal hormone 1,25-D by avoiding excess exposure to sun and bright lights and by means of dietary restrictions of vitamin D is effective because it lessens the ability of these occult intracellular bacteria to survive. The low-dose antibiotics weaken them even further so that the immune system can then do its job properly to kill them instead of protecting them in a safe niche where the antibiotics cannot penetrate in high enough concentrations to kill them.

Without the help of Benicar to block the angiotensin receptors on the host's macrophages, the bacteria which reside safely sequestered inside these phagocytic WBCs are able to convert the precursor vitamin 25-D into the active secosteroidal form, known as 1,25-D. Too much 1,25-D is toxic to the host.

This excess conversion of vit 25-D to 1,25-D does not occur in healthy, normal individuals who are not infected with these intracellular bacteria though because their kidneys manage to control the level of conversion of 25-D to 1,25-D so that it remains at a physiological, healthy level instead.

Toxic levels of 1,25-D suppress the host's immune system and also throw out of balance many other of the host's steroidal hormones. However, if the angiotensin receptor sites are blocked by the Benicar blockade, then the bacteria inside the host's macrophages cannot utilize 25-D to convert it to excess 1,25-D -- therefore, no immuno-suppression and no hormonal imbalances.

Here is the link to a Trevor's published scientific papers which explain all of this in great detail so that you can see for yourself if I've explained it right or not. I know my explanation is pretty close, but until I spend some more time reviewing it again, I'm hesitant to state for sure that I've got it down exactly right.

http://trevormarshall.com/papers.htm

quote:

---

Originally posted by TX Lyme Mom:
What we have found, though, based on experience is that Benicar potentiates the effect of the antibiotics more than anyone could ever imagine who hasn't experienced it or witnessed it up close in a family member sho has gone through it. It's absolutely indescribable, amazing and unbelievable just how much difference Benicar can make when it is combined with the right antibiotics taken at the right dosage levels and also at the proper frequency of dosing.

---

I'm sorry, but this just doesn't add up to what you're claiming it does. I know at least 5 people who have done full dose abx while on high dose Benicar with no adverse effects. No one ever addresses this. It was just stated at some point in time that Benicar potentiates abx, and miraculoulsy follows the bugs' life cycle exactly to kill bugs, and then it became part of an entire belief system package. Don't you think the Sankyo package insert would warn of combining Benicar with abx, if there were really such a huge risk?

You're completely ignoring the possibility that it may be the low dose abx that's causing the activation of the bug's defense mechanisms, and in turn its proliferation, which is causing these horrible so-called "herxes". Or perhaps there's something else altogether going on. Some people have no "herx" with mino and Benicar, other's have terrible herxes with a few milligrams. Maybe it's because people metabolize the drugs differently, or they're simply having negative reactions to mino, which is described abundantly throughout the medical literature?

This conjecture, which has become a kind of mythology, really needs to stop if we're ever going to know whether Benicar or other ARBS can truly help us or not.

penny

p.s. If this approach of low dose abx being potentiated by Benicar is so true, why have none of the original mper's announced that they've come off the abx or the benicar?

Anybody that trust the FDA in these matters and the drug industy should look at the example of the drugs cited above. I myself was on the Marshall Protocol and kept getting sicker and sicker. The more I followed it the worse it became until it was intolerable. The climax came when I had two episodes of gastrointestinal bleeding ten days apart. People have bled to death from using anti-inflmatory drugs.

Not all antibiotics are going to have this same effect an an increased Herx effect when takent together with Benicar because some antibiotics work differently from the special antibiotics which are being used in the MP program.

For example, antibiotics which belong to the cell wall inhibiting (CWI) families of antibiotics, such as the penicillins and the cephalosporins, do not seem to work the same way as the protein synthesis inhibiting (PSI) antibiotics do.

Lyme patients are very familiar with how good they feel on CWI antibiotics because these antibiotics work by getting rid of the cell walls of the pathogens, where the antigens which cause so many of the symptoms are located. However, when one gets rid of the cell wall, what is left is a cell wall-less pathogen instead -- ie, a pathogen which is even more capable of penetrating host tissue cells and of hiding out intracellularly as a stealth pathogen in its CWD form. (CWD = cell wall deficient/divergent)

Therefore, it would depend in large part on several factors: 1.) what antibiotic is used in combination with the Benicar; 2.) the dosing schedule, since pulsed antibiotics of the PSI classes tend to cause more die-off effects.

The reason that the pulsing schedule of taking the antibiotics only every other day is so effective is that these PSI antibiotics inhibit protein synthesis in the host as well as in the pathogen. If you inhibit protein synthesis in the host on a continuous basis, then the host's immune system cannot manufacture enough WBCs with enough potency to be able to kill the intracellular pathogens at a very high rate. That's why one experiences a stronger Herxheimer reaction on the day OFF of the antibiotic than he does on the day ON the antibiotic.

Dr. Thomas McPherson Brown explained this concept about the importance of "pulsing" the antibiotics on an every other day dosing schedule in his classical laymen's text book on this subject published over 10 years ago.

One of the modifications to the MP program being suggested for patients who have an unusally heavy bacterial load, such that they cannot tolerate taking minocycline together with Benicar, is to cut the dosage of minocycline while increasing the frequency of the dosages. This alteration of the dosing schedule lessens the die-off by maintaining a steadier concentration level of the antibiotic in the host's blood stream, thereby not allowing his own immune system to be quite as effective. Then later on, when his pathogen load has been reduced enough that he can start to move towards the recommended pulsing schedule for taking the antibiotics, he can start to pulse his antibiotics by skipping a day between dosages.

Also, I suspect that some/many of the so-called adverse reactions and side-effects listed on the package insert and other drug warnings for Benicar have been noted because this drug has been tested on persons who are not in perfectly good health themselves and that the symptoms which result are a sign that the person might have a low-grade infection with one or several stealth pathogens.

I don't know why, but it always cheers me to read you. (Apparently, even when you're writing warnings.) I love your humor and your eloquence. I find I smile every time I see your name by a post.

Your points are valid. In my case I reached the point where I began to feel that Lyme and co-infections would be the death of me if I didn't do anything. I have tried other things, but I always relapsed. I was miserable and desperate, so after weighing things very carefully, I was willing to accept risks - risks I was aware of as well as those I can only imagine. To be blunt, I would like to be comfortable and enjoy a few good years before I die.

This topic reminds me of the wonderful days at Lymenet when people could agree to discuss heated topics openly and,for the most part, politely. Oh, my have I ever missed open, uncensored communication. It's so nice to be able to agree to disagree.

I haven't done high dose antibiotics while on Benicar. I do know that at least one patient at the MP forum experienced awful symptoms that I do NOT believe was Herxing while she was on just 3mgs of Minocin. Her experience did NOT seem to me to be Herxing. In fact, it made me wonder whether or not this dose was merely low enough to stimulate, and not actually inhibit the bacterial growth. (I have a hard time believing that Minocin and ABX kill the most bacteria when their levels are approaching zero.)

Maybe the super-low-dose of Minocin contributed to exacerbated symptoms by stimulating the bacterial growth, not by killing anything. I see by your response that I'm not the only one who has been thinking along these lines.

My lab work verifying high levels of 1,25 D causes me to believe that TM's model may apply to me. I also felt improvement in symptoms simply by avoiding D foods and sun & light exposures. When I first started taking Benicar, oh my, did it ever make me feel good! (Again, this is my experience.) I didn't start out at super low doses of Minocin when I was on the MP. I began at 25mgs and moved up to the full 100mgs qod as quickly as I could. This worked really well for me. (Again, my experiences only.

I have NOT used high dose antibiotics at all while I've been on Benicar because I was interested in seeing how this protocol built on the foundation that Dr. Thomas McPherson Brown. I do know people like you who have done so successfully, without any adverse effects.

I did experience symptoms that so closely mirrored my actual Herxing responses during times when I was taking high doses of multiple antibiotics for Lyme and co-infections. My experience causes me to believe that one can Herx on a lower dose of ABX when it is combined with Benicar. I've never felt as if I was staying anywhere close to the super-low-dose that might be encouraging bacterial growth. I do actually feel like I'm Herxing when I feel like I'm Herxing. (Yikes, I hope you figure out my meaning there.)

My perceived Herxes follow a very predictable pattern on my calendar. They are almost like clock work and that does tend to influence my belief in this aspect of the model. (I should admit that, for the most part, I believe much of the model, even if I can NO longer believe in the man. I hope that makes sense too.)

I understand that McPherson-Brown's protocol is a 2+ year process for curing autoimmune disease. Given that precedence, I will feel better about evaluating this protocol's success/failure at the 2-year mark. I'm still only 6+ months into this process, so it's too soon for me to know anything, let lone to claim a cure. It does seem to help symptom management though.

I agree with you that much of TM's speculations have become myth and that we need to be discussing these things openly without the cult like dogma. Please forgive me my tendency to focus entirely on my current improvements in light of his model. This is what makes sense for me right now from my own patient perspective and my own experiences with this protocol. That's really all I have to go on as I sort through things. I do know a Sarc patient who claims to be recovered. She reported that she has now gone off antibiotics and has not relapsed yet. We at this site seem to recognize that Sarc is different from CFS and Lyme

I must say, TM's behavior towards you saddened me. It was a real eye opener.

Is there more bacterial die-off going on with the MP than there would be, with the same doses of antibiotics alone?

quote:

---

Originally posted by paulscha:
Paula, if I interpret your question narrowly, it reads like this:

Is there more bacterial die-off going on with the MP than there would be, with the same doses of antibiotics alone?

My answer is that I very much doubt it.

---

I am suggesting that if we took the same doses of antibiotics WITHOUT Benicar and reduction of D we might get the same results. There may well be something going on with pulsed antibiotics (not just the low dose, but the timing) that kills borrelia.

I tried to simply explain the concept behind pulsed antibiotics. It is not that the antibiotic kills best at a low level. It is that the bacteria cannot mount the same defense over time when the antibiotic threat has been decreased and then increased in a cyclical fashion. I guess they think it is safe to come out and play, then they get whacked. It is like they run out of bullets.

Also, the triple combo Trevor is using may well be key. He has selected effective antibiotics which would require the bacteria to develop 3 mutations to survive. This is not likely to happen. Of course, this might lead one to ask why not start all three at once. Would that mean death by herx??? LOL

That wasn't really funny was it?

Then there is the aspect of reduced inflammation. We know that the SARS patients died from lung inflammation, not the virus. So is Benicar the key?

I don't know the answers. I think I know the questions. Meanwhile I feel like LoneStar, so far it is working for me.

Paula Carnes

Nice to hear a voice of reason.

I also think that elements of the protocol hold promise, but it's just way too early to know how or why, or for whom. And the information we've been fed so far (since so many reports are censored or edited or ignored) is just too biased to evaluate objectively, IMO.

I'm still responding really well to Benicar, but am definitely concerned about the possibility of long term side effects. I'm also the classic case of someone who can't take minocycline. There are SO many studies that show that minocycline can be really dangerous for certain people. So far, I'm doing fine with Zithromax.

I'm truly praying that Sankyo and the other ARB companies will do some serious research in this area. Gary Smith did a wonderful, highly acclaimed study on the benefits of ARBS as anti-inflammatories and their potential for curing cancer. He believes there are implications for all kinds of "autoimmune" disease. I sure hope we hear more from him. We used to have his research in the files at Infection and Inflammation, before we were suddenly and "mysteriously" shut down. You can read it at the Journal Of Inflammation:
http://www.journal-inflammation.com/content/1/1/3

We really need more good research in this area asap, as it holds such promise. But we can't allow ourselves to be brainwashed out of desperation.

penny

Tetracyclines and Zitho are common antibiotics prescribed for many many things. If there was any potentation aspects then given the number of years that ARBs have been used and how heavily they are used with this high-blood pressure nation.... I would expect that to have been very well documented in the literature. It is not.

Some one has suggested that there are two things going on with this odd herx:
Hormone changes from both benicar and vitamin D deficiency

The reduction of vitamin D is actually turning off the immune system so all of the auto-immune responses are being turned off [no symptoms] and the infection is allowed to grow uninhibited. Remember, it is the body RESPONSES to the infection that causes the symptoms. Turn off the immune system by starving it of Vitamin D and the symptoms will disappear [and any existing infection will thrive -- so 1 mg of a tetracycline would cause a massive toxin dump because the body is full of infections!]

quote:

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Originally posted by TX Lyme Mom:

Not all antibiotics are going to have this same effect an an increased Herx effect when takent together with Benicar because some antibiotics work differently from the special antibiotics which are being used in the MP program.

[/B]

---

On low dose abx, the field of dentistry made some interesting paradoxical findings, back in, I think, the mid 1980s(?)

If I'm not mistaken one finding 'may'have had to do with somehow 'fooling' bacteria by giving a low dose instead of a high dose.

A line of investigation into this might provide some clues.

You didn't mention which 3 abx you were talking about

Did you sign a confidentiality agreement not to reveal the 3 abx? If so, then it's going to be mighty hard to discuss anything with any substance.

Are you talking about Mino, bactrin and Zith?

I was involved in discussions about the efficacy of low dose abx with your group.
As a matter of fact, I supplied your group with abstracts showing that some pathogens's variants are susceptible to abx under the MIC while the classical or parent form was not susceptible to low doses at all. SO, while there is evidence that low dose can kill some variants (but it's not quite so simple as just taking a tiny amount).

There is alot of data out there about how low a dose you can go with certain abx and still either control or kill bacteria that has come out of the AIDS research, and I forwarded plenty of papers to your group about those abx classes and how AIDS patients need to ramp up Bactrim to avoid side-effects, how many times per week you need to take Bactrim to keep the populations of certain pathogend down. etc, etc...

The idea to use more than one abx at a time (one to get the classical form and the otehr to get it's variant) is not new- it's used in H. pylori and Lyme therapy.

For Lyme, I used Mino, Bactrim and Zith - all three together, not at low dose, but at therapeutic doses. (200mg Mino, 500mg Bactrim, 500mg zith perday).
This triple comb followed over a year of other abx for Lyme and I think it was excellent for the remaining neuro (eye) symptoms that remained.

I left these discussions NOT being convinced by your group that their suppositions about the benefits of LOW DOSE abx (even in combo) outweighed the risks. ... the risks being the development of mtuants of other pathogens you aren't even targeting.. or just keeping the bacteria colonized (not killing them), and building a dependance on low dose.

And this doesn't even get into the high dose ARB Benicar discussion - or the Herx VS adverse drug reaction discussions.

In any case- I still have exactly the same questions to you guys as I stated earlier in the thread. ESPECIALLY the statement coming out of your group about Minocycline
working the best (at killing) as it degrades out of the tissues.. I've been trying to get an answer to that one since I saw it in print.

Barb

Paula wrote:
Also, the triple combo Trevor is using may well be key. He has selected effective antibiotics which would require the bacteria to develop 3 mutations to survive. This is not likely to happen. Of course, this might lead one to ask why not start all three at once. Would that mean death by herx??? LOL

quote:

---

Originally posted by bettyg:
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?

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

[This message has been edited by bettyg (edited 20 March 2005).]

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BettyG,
The best way to defeat the lack of capability for truly private messaging at the MP website would be for everyone to display his/her e-mail address in his/her "profile" so that other members could use private e-mails, which would indeed be private, rather than being forced to use only the website's PM function, which can easily be read by the two Administrators (Trevor and Reenie), although not by other Board Staff mentors.

Betty, if you will send me a private e-mail (since your own e-mail address isn't displayed), then there's more that I can tell you, but I dare not post it openly, even here in this forum.

To the best of my knowledge, Paula's and my status was not changed until after the Chicago conference ended.

1) As Barb worries, and I do, low dose abx may create resistant organisms. It certainly does so in much simpler organisms, in our animals for instance. REsistant e-coli is now rampant. Same with resistant staph.

Why would abx resistance be such a huge deal, and people believe that low dose or pulsing works?

2) Please attend carefully to the fact that suppressing cox-2 pathway was seriously harmful--50,000 people died of related heart attacks etc.

Please consider the recent scandal with tysabri--2 people got PML a rare fatal brain virus, one died, the other didn't. Tysabri is an immune "modulator" ie suppressor

It is well known that other anti inflammatories INCREASE the risk of cancer, such as enbrel, remicade etc.

quote:

---

Originally posted by Lonestartick:
Hi Penny,
I haven't done high dose antibiotics while on Benicar. I do know that at least one patient at the MP forum experienced awful symptoms that I do NOT believe was Herxing while she was on just 3mgs of Minocin. Her experience did NOT seem to me to be Herxing. In fact, it made me wonder whether or not this dose was merely low enough to stimulate, and not actually inhibit the bacterial growth. (I have a hard time believing that Minocin and ABX kill the most bacteria when their levels are approaching zero.)

Maybe the super-low-dose of Minocin contributed to exacerbated symptoms by stimulating the bacterial growth, not by killing anything. I see by your response that I'm not the only one who has been thinking along these lines.

---

Yes, I have a couple of data points from authoritative sources that say that these ultra-low doses of minocycline (below 12.5 mg) might actually be stimulating the growth of some pleomorphic bacteria, rather than inhibiting them. One such reference is Lida Mattman's medical textbook, "Cell Wall Deficient Forms: Stealth Pathogens" (CRC Press). There are passages in her textbook which describe that same phenomenon.

Another authoritative source to reconfirm Mattman's observations of this phenomenon comes from Luther Lindner, MD, PhD, who teaches pathology in the College of Medicine at TAMU and who also runs a private research lab on the side which deals with culturing CWD pathogens from the blood of CFIDS and MS patients. He has made the exact same observation, that different dosages of the same antibiotic may either inhibit or stimulate the growth of certain organisms in vitro.

It is unfortunate the the Phase 1 Treatment Guidelines were so hastily revised in a one week period of time and without sufficient review by other experienced Board Staff members, just prior to the ILADS conference late last October. It took quite a long time and a good bit of behind-the-scenes effort (by Paula and myself) to point out that serious discrepancy before they finally realized that that unwise revision needed to be re-revised again. We realized right away that this was hurting patients, but it was difficult for us to get our points across until several patients had been hurt by this mistake.

Instances like that were what compelled the two of us to hang in as long as we did, thinking that we could have some kind of positive influence. I hate to think how many more people could have been hurt if we had not stood up for correcting that very obvious error.

We both still believe that the MP program deserves a fair trial, but we also believe that its further evolution needs to be in the hands of the doctors who are qualified to implement it and to make modifications to it to fit the special needs of the various cohorts of patients who might benefit from it.

QUOTE from above: (I have a hard time believing that Minocin and ABX kill the most bacteria when their levels are approaching zero.) UNQUOTE
My Comment: DITTO. That dogma was incorporated into a FAQ, which neither Paula nor I were permitted to have any in-put into writing, and which I never agreed with because I felt it was overly-simplistic and blatantly false. I tried to address this concept in subsequent messages myself, but those explanations got lost in the shuffle while this erroneous dogma remained, enshrined into an FAQ, as if it were unquestionably true.

Did you sign a confidentiality agreement
which prohibits discussion of some aspects of the protocol? Or are you worried about a Lawsuit?

Something's up - based on your reply to Betty (below.)

If you can't discuss certain technical aspects, then IMO it's a waste of time to skirt around the issues, or talk about what one either 'beleives' in or not..

If that's the case it's a big waste of my time.

Barb

TxLymeMom wrote:
Betty, if you will send me a private e-mail (since your own e-mail address isn't displayed), then there's more that I can tell you, but I dare not post it openly, even here in this forum.

quote:

---

Originally posted by oxygenbabe:
Important points to consider:

1) As Barb worries, and I do, low dose abx may create resistant organisms. It certainly does so in much simpler organisms, in our animals for instance. REsistant e-coli is now rampant. Same with resistant staph.

Why would abx resistance be such a huge deal, and people believe that low dose or pulsing works?

Why do you guys think this is any different?

---

As I see it, CFIDS and chronic, late-stage Lyme patients are already infected with those "resistant" pathogens -- in the form of CWD organism which hide out intracellularly inside host tissue cells, including the very phagocytic WBCs of the immune system, which are supposed to be killing them, but which are parasitized and "paralyzed" by them instead.

This is what the MP program's approach is uniquely qualified to deal with -- namely, granuloma formations and also intracellular pathogens, which have paralyzed the host's immune system's ability to function properly.

quote:

---

Originally posted by bpeck:
TXLMom:
You've just replied without answering any of the questions I raised.. with the most impoertant being:

Did you sign a confidentiality agreement
which prohibits discussion of some aspects of the protocol? Or are you worried about a Lawsuit?

---

Barb,
Nope, no confidentiality agreements. I do have other separate concerns though, and they aren't about any kind of lawsuit either.

It's just better not to spell everything out openly though, for reasons which should be obvious to anyone who is intimately acquainted with the way the MP website operates.

For that reason, I do not feel free to elaborate about these concerns to anyone new whom I do not recognize from earlier associations.

I'll try to address some of the other in-depth scientific concers to the best of my ability, as time permits. I have several other pressing matters to attend to today, so my time at the computer is still very limited right now.

For the third time in this thread you have not adressed my questions.

So I'm going to make some assumptions of my own, based on your avoidance of the direct questions, and your replies to others in this thread.

This thread to me is looking like an advertisment to try some Alt.Off-Label
therapy, based on subjective beliefs with no interest in discussing the drug mechanism, or lack of, for this protocol.

So..

Sorry - and don't take this personally, becuase that's not the way it's meant..

But this is a waste of my time.

Barb

Yet none who claim to have achieved this 'cure' have stopped taking Benicar.

We know that many people have taken Benicar at MP doses combined with high doses of antibiotics. The 'potentiated' mega-herx that should have ensued did not.

The official explanation - that tiny, homeopathic doses of antibiotics devastate bacteria but inhibitory concentrations do not - is simply not credible. Elizabeth concedes this.

So why does she repeat the claim?

Not because of something she has read in Marshall's papers. I have read them, read each several times, read many of their referenced materials (which often contradict the claims they are invoked to support).

It was precisely by reading those papers closely that I discovered I had been sold a bill of goods.

So why? Why is the claim repeated?

When patients report an exacerbation of symptoms in response to a given behavior (it hurts when I do this) the common sense answer is 'don't do that'.

Elizabeth has said repeatedly now that this answer does not apply to symptom exacerbation experienced on the MP, because antibiotics are being potentiated and infection is being cleared.

Elizabeth, this is not an academic question. You propose to offer guidance to patients who either are, or are not, helping themselves by combining massive doses of Benicar, D-deprivation and sub-inhibitory doses of antibiotics.

You have participated in an enterprise that tirelessly assures patients who feel worse on this regimen, 'not to worry, you may feel worse but you are certainly GETTING better.'

Here, in this forum, where all anyone asks is that you be candid, you have been asked a straightforward question: on what BASIS do you say that these patients are getting better?

All that is asked, Elizabeth, is that you clearly indicate whether you have a rational basis for that claim, or are articulating a belief, grounded in faith, not fact.