posted 20 March 2005 15:51               

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.

posted 20 March 2005 16:17            

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!

posted 20 March 2005 16:30            

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.

posted 20 March 2005 17:17               

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

posted 20 March 2005 17:55               

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?

posted 20 March 2005 18:28               

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.

posted 20 March 2005 18:29               

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.

posted 20 March 2005 19:17               

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.

posted 20 March 2005 19:34               

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.

posted 20 March 2005 19:49               

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

posted 20 March 2005 21:40               

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

posted 20 March 2005 22:17               

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

posted 20 March 2005 23:43               

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:

---

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]

---

posted 21 March 2005 02:53            

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.

posted 21 March 2005 03:51               

I have discovered something that might be of interest. In my experimentation with the protocol, I can reduce my Benicar intake from the Marshall Protocol recommended 120 mg per day down to about 60 or 70 mg per day and still get the same effect. I recall there were several other people who also noted this. Soon I will be attempting to reduce the dose even further to see if I can maintain the same effect. If I can get the dose down a bit more, it would fall into the range of typical Benicar prescribing. Personally I would feel much more comfortable with that.

Additionally, I can vouch for (at least via personal experience) TX Lyme Mom's assessment that Benicar has an extreme potentiating effect on antibiotics. I tend to be a bit overzealous with antibiotic experimentation so I have used most of them. Benicar does indeed potentiate all the ones I have tried. I have not tried any cell-wall inhibiting antibiotics for the reasons already stated in this thread.

Despite all the obvious problems with the Marshall Protocol, it does seem to have pushed me through some tough areas that were not responding to other therapies. I'm very much enjoying this spirited discussion, and I'm glad to see some of the Marshall Protocol members now posting on Lymenet.

Bryan

posted 21 March 2005 08:17            

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

posted 21 March 2005 09:40               

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).]

---

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.

posted 21 March 2005 09:55               

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.

posted 21 March 2005 10:08               

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.

posted 21 March 2005 10:14            

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.

posted 21 March 2005 10:18               

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.

posted 21 March 2005 10:33               

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.

posted 21 March 2005 10:39            

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