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» LymeNet Flash » Questions and Discussion » Medical Questions » Interview with Lyme patient on MP.

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Author Topic: Interview with Lyme patient on MP.
B R H
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http://bacteriality.com/2008/02/17/interview16/
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steelbone
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Very impressive...I'm get closer and closer to given it a try. The whole light thing scares me. How will I go to work and look at a computer all day...things like that

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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B R H
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There is no reason you can't continue to work or use a computer while on MP!!! I did & many others do!
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steelbone
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Did you have to wear eye protection while at work?

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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SForsgren
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I still wonder how easy is it for these L-form bacteria to be transmitted? Is she suggesting that casual contact with the boys led her to be infected? If that is true, then likely everyone is infected and one would question what makes Ms. Stiles unique?

What is the "L-form" bacteria if Borrelia is just a "co-infection" as stated in the interview? Is that Dr. M's theory as well that it is not the L-form of Bb that we are looking at with the MP but another unrelated L-form bacteria?

Other than Dr. M's opinion, I have not heard of many other doctors supporting the MP. In fact, more of the ones I have spoken to believe that restricting Vitamin D is much more likely to be dangerous to health than beneficial. I am seeing more and more practitioners using high dose vitamin D as a treatment even.

I've personally only met one person that felt that the MP really helped them. I know another one now that is just a few months into the program and I am watching with interest to see how they do. I would not rule out anything that might be beneficial, but so far, I haven't seen the numbers of people to suggest that it is.

I do agree with her comments that we are in a "pea soup" of infections and I think we often hyperfocus on Borrelia, Bartonella, Babesia, Ehrlichia, etc.

Is there a connection between VDR genetic mutations and ones likely outcome with the MP?

I'll never say never as this disease is complex and there may be some important information in the MP. I think, however, if it were a miracle, we would see more doctors using it and more patients with chronic Lyme recovering.

--------------------
Be well,
Scott

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SForsgren
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Found the list on their site of L-Form bacteria:

Some of the species of L-form bacteria that have been implicated in chronic disease include Bacillus anthracis, Treponema pallidum, Mycobacterium tuberculosis, Helicobacter pylori, Rickettsia prowazekii, and Borrelia burgdorgeri.

--------------------
Be well,
Scott

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B R H
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quote:
Originally posted by steelbone:
Did you have to wear eye protection while at work?

I chose to, so I'll never know if I had to. There are some sunglasses out there that aren't too ugly. Just pretend you're Neo.
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adamm
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How can she be so sure that she didn't

get Lyme from a tick, given her proximity to ground zero?

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B R H
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quote:
Originally posted by SForsgren:
I still wonder how easy is it for these L-form bacteria to be transmitted? Is she suggesting that casual contact with the boys led her to be infected? If that is true, then likely everyone is infected and one would question what makes Ms. Stiles unique?

What is the "L-form" bacteria if Borrelia is just a "co-infection" as stated in the interview? Is that Dr. M's theory as well that it is not the L-form of Bb that we are looking at with the MP but another unrelated L-form bacteria?

Other than Dr. M's opinion, I have not heard of many other doctors supporting the MP. In fact, more of the ones I have spoken to believe that restricting Vitamin D is much more likely to be dangerous to health than beneficial. I am seeing more and more practitioners using high dose vitamin D as a treatment even.

I've personally only met one person that felt that the MP really helped them. I know another one now that is just a few months into the program and I am watching with interest to see how they do. I would not rule out anything that might be beneficial, but so far, I haven't seen the numbers of people to suggest that it is.

I do agree with her comments that we are in a "pea soup" of infections and I think we often hyperfocus on Borrelia, Bartonella, Babesia, Ehrlichia, etc.

Is there a connection between VDR genetic mutations and ones likely outcome with the MP?

I'll never say never as this disease is complex and there may be some important information in the MP. I think, however, if it were a miracle, we would see more doctors using it and more patients with chronic Lyme recovering.

YES! Everyone IS infected with CWD bacteria! It is your exact mix of pathogens that you've accumulated thruout your lifetime that determines your symptoms. Borrelia's large number of plasmids ("variants") give it a tremendous ability to add to the pathogenic pea soup.

There are dozens of people that have gone into remission on MP actively posting on the MP message boards. My doctor believes I was cured months ago.

The DNA pea soup concept is the key that will set your mind free. Obviously I've been watching Matrix lately. [Smile]

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steelbone
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Do you need to avoid sun your entire life or just when on MP?

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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B R H
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quote:
Originally posted by adamm:
How can she be so sure that she didn't

get Lyme from a tick, given her proximity to ground zero?

Maybe she did. She does mention ticks & fleas later in the interview. Maybe she doesn't really care either & is focused on getting rid of whatever it is instead.
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B R H
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quote:
Originally posted by steelbone:
Do you need to avoid sun your entire life or just when on MP?

Whether or not you have to avoid sun at all is unknown until you start MP. I was sensitive before starting MP & my sensitivity worsened before it got better. This seems to be somewhat common, but overall is difficult to predict.

I've been able to go sledding, hiking, & ride my bike as far as 80 miles outdoors without issues lately.

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steelbone
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thanks...i love playing golf and going on warm vacation and sitting by the pool with a drink...Don't want that to end if i can help it.

--------------------
All The Best,
Paul
[email protected]

The harder you work the luckier you get!

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B R H
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quote:
Originally posted by SForsgren:
Found the list on their site of L-Form bacteria:

Some of the species of L-form bacteria that have been implicated in chronic disease include Bacillus anthracis, Treponema pallidum, Mycobacterium tuberculosis, Helicobacter pylori, Rickettsia prowazekii, and Borrelia burgdorgeri.

Note that the medical wisdumb at the time laughed at Barry Marshall's assertion that H. pylori could cause gastritis, peptic ulcers, or gastric cancer. That is now an established medical fact.

Also note that, although not related, Trevor Marshall went to the same school as Barry Marshall & I believe studied under him as well.

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D Bergy
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The Marshall Protocol seems to be grounded in more science than most other treatments. If faced with popularity or science, I will go with science.

Just because scientifically it should work, does not mean it will.

I have no idea of what their success ratio is, but it does work for some.

D Bergy

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oxygenbabe
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I am glad she's better. It sounds like some, not sure how many, do better. Although the idea that she got CWD from boys in the hospital seems a bit loony tunes. Most likely she just got tickbites while living in Connecticut, where it all started. And then she and her relatives got tickbites on the Jersey shore--they got sick too, and they hadn't been tending to lymie boys years before.

On the other hand, a woman named Marie came onto the yahoo group lymetopics in desperate shape from the MP, with impaired kidney function and severe pain and multiple symptoms. Her doctor pulled her off the MP and her kidneys began to recover.

And what of Aussie Barb? I don't know how she's doing now but how does her experience fit with the protocol? She was on it for four years. She should have been steadily improving, not end up in the hospital in serious condition with anemia, pancreatitis, and a gallbladder infection that did not respond to antibiotic treatment last I heard. I think she was in the hospital a month and I was backchanneled that when home she was still doing very poorly. Her attitude was good, but her body was in seriously bad shape.

So buyer beware, this protocol seems to help some and be quite dangerous to others.

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lymeHerx001
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I always wonder about blood pressure with this. Ive always had a problem with orthostatic hypotension.

In fact the other day I took some aleve and nearlly passed out 20 minutes later because my blood pressure was 160/100 pulse 130.

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yanivnaced
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What is involved in doing this protocol? (the mechanics)
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B R H
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quote:
Originally posted by oxygenbabe:
I am glad she's better. It sounds like some, not sure how many, do better. Although the idea that she got CWD from boys in the hospital seems a bit loony tunes. Most likely she just got tickbites while living in Connecticut, where it all started. And then she and her relatives got tickbites on the Jersey shore--they got sick too, and they hadn't been tending to lymie boys years before.

On the other hand, a woman named Marie came onto the yahoo group lymetopics in desperate shape from the MP, with impaired kidney function and severe pain and multiple symptoms. Her doctor pulled her off the MP and her kidneys began to recover.

And what of Aussie Barb? I don't know how she's doing now but how does her experience fit with the protocol? She was on it for four years. She should have been steadily improving, not end up in the hospital in serious condition with anemia, pancreatitis, and a gallbladder infection that did not respond to antibiotic treatment last I heard. I think she was in the hospital a month and I was backchanneled that when home she was still doing very poorly. Her attitude was good, but her body was in seriously bad shape.

So buyer beware, this protocol seems to help some and be quite dangerous to others.

So you don't believe CWD bacteria are communicable? That's "loony tunes" in my opinion!

An alternative theory, & more plausible one in my opinion, would be that people who are more ill to begin with experience stronger herx. Many people on MP were far more ill than anyone here.

Killing bacteria that has taken up residence inside our tissues & organs inevitably means those tissues & organs will also suffer when the bacteria are killed. Fortunately our bodies have an amazing capacity to heal, especially when inflammation is reduced.

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SForsgren
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quote:
Originally posted by B R H:
Many people on MP were far more ill than anyone here.

That statement cannot be substantiated. There are a number of sick people here on Lymenet looking for answers just like those on the MP and I don't think it is fair to any of them to suggest that the MP people are somehow sicker than those that have not gone down the MP path.

--------------------
Be well,
Scott

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B R H
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quote:
Originally posted by SForsgren:
quote:
Originally posted by B R H:
Many people on MP were far more ill than anyone here.

That statement cannot be substantiated. There are a number of sick people here on Lymenet looking for answers just like those on the MP and I don't think it is fair to any of them to suggest that the MP people are somehow sicker than those that have not gone down the MP path.
Fair enough, but I haven't seen many here whose only option was a lung transplant, for example!
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B R H
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quote:
Originally posted by lymeHerx001:
I always wonder about blood pressure with this. Ive always had a problem with orthostatic hypotension.

In fact the other day I took some aleve and nearlly passed out 20 minutes later because my blood pressure was 160/100 pulse 130.

If you're concerned how the higher than usual dose of Benicar would affect your BP, there is really no need to be. Benicar is a weak BP medicine & the reduction of BP is independent of dose after ~40 mg/day. In other words, your BP would only drop 10-15 points maximum due to the Benicar alone. Your illness may result in more or less BP reduction (yes, some people report increased BP on MP).

I was also concerned with BP before starting MP since I have a spinal cord injury & suffered from severe orthostatic hypotension after my injury. I would pass out more than 20 degrees above horizontal! That symptom mostly resolved within a few years (before the tick bites), but I was still concerned.

I did have some dizziness & fainting issues early on MP, but those have all resolved despite being on the same dose of Benicar the entire time. So those symptoms were obviously symptoms of the disease, not the medications.

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B R H
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quote:
Originally posted by yanivnaced:
What is involved in doing this protocol? (the mechanics)

Briefly, low dose bacteriostatic antibiotics taken every other day or even less frequently along with higher than usual dose of Benicar & vitamin D reduction.
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yanivnaced
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I looked up Benicar and looks like it's basically a vasodialator.

Would the MP work with high dose niacin instead? It also dialates blood vessels and capillaries.

And for low dose abx: which abx and what is the typical dose?

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oxygenbabe
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I post on here to help and warn others, BRH, not really to dialogue with you as you don't dialogue. You are a "convert" and make unsubstantiated statements frequently. I guess if you "pump" the protocol you should also list warnings.

To the other poster, benicar functions among other things as an anti inflammatory. That's probably why people feel better. However there are some serious side effects in some folks including dangerous hypotension (low blood pressure) and triggering diabetes, as well as kidney impairment even failure.

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yanivnaced
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I too am leary about Benicar. Especially at high dose for prolonged periods, and it was FDA approved relatively recently.

However, looking at the MP site FAQ's, the stuff about dynamic Minocycline titers is extremely thought provoking. I think there is definitely something to that. Next if we could just find something natural or more proven than Benicar...

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lymeHerx001
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I believe Benicar therapy with Marshal Protocol is unique. It is not advised that people try to change it in any way.

That being said, what isn't unique to this disease?

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oxygenbabe
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There are two sides to the low-dose coin.
One is: less herx.
Two is: antibiotic resistance.

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oxygenbabe
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B R H:
"I did have some dizziness & fainting issues early on MP, but those have all resolved despite being on the same dose of Benicar the entire time. So those symptoms were obviously symptoms of the disease, not the medications."

This is the kind of statement you make that is naive.

Often people have reactions to drugs that, over time, they can adapt to. This is true of many drugs. Over time the side effects will diminish.

In some folks of course this is not the case and they may end up with serious hypotension and in the E.R. as some have done on benicar.

It is not that low blood pressure on benicar was a symptom of lyme.

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Geneal
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While I am glad for whomever gets well by this protocol,

I have to admit....it is not for me.

I appreciate the information and the discussing both pros and cons of

Such information.

BTW, I have a neighbor (CDC positive for Lyme) that was considering this treatment...

She was already severly deficient in Vit D.

I encouraged her to read up on it.

We all want to get well.....desperately.

Glad you did well with this.

Hugs,

Geneal

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B R H
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quote:
Originally posted by yanivnaced:
I looked up Benicar and looks like it's basically a vasodialator.

Would the MP work with high dose niacin instead? It also dialates blood vessels and capillaries.

And for low dose abx: which abx and what is the typical dose?

My understanding is that Benicar was chosen for it's specific affinity for the VDR - not too high, not too low, just right. It is an agonist of the VDR. I believe another ARB was used in initial trials but when Benicar became available it was deemed much more suitable.

Minocycline is a key antibiotic but you add other bacteriostatic antibiotics as you reduce your pathogen load. Too much bacterial die-off too fast is dangerous. You start with 25 mg minocycline & the end dose is 100 mg, taken only every other day, for example.

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B R H
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quote:
Originally posted by oxygenbabe:
I post on here to help and warn others, BRH, not really to dialogue with you as you don't dialogue. You are a "convert" and make unsubstantiated statements frequently. I guess if you "pump" the protocol you should also list warnings.

To the other poster, benicar functions among other things as an anti inflammatory. That's probably why people feel better. However there are some serious side effects in some folks including dangerous hypotension (low blood pressure) and triggering diabetes, as well as kidney impairment even failure.

I "dialogue" here with others time permitting. What claims have I made that cannot be substantiated? The side effects you claim are not recognized by the FDA.
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B R H
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quote:
Originally posted by oxygenbabe:
There are two sides to the low-dose coin.
One is: less herx.
Two is: antibiotic resistance.

You have no idea what you're talking about. Since you haven't tried MP, you have no idea if the herx is less. I can assure you it is not. The herxes I experienced were more significant than with IV Rocephin or any other protocol.

If antibiotic resistance were really an issue, doctors wouldn't commonly prescribe minocycline long-term in low doses to teenagers with acne!

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B R H
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quote:
Originally posted by oxygenbabe:
B R H:
"I did have some dizziness & fainting issues early on MP, but those have all resolved despite being on the same dose of Benicar the entire time. So those symptoms were obviously symptoms of the disease, not the medications."

This is the kind of statement you make that is naive.

Often people have reactions to drugs that, over time, they can adapt to. This is true of many drugs. Over time the side effects will diminish.

In some folks of course this is not the case and they may end up with serious hypotension and in the E.R. as some have done on benicar.

It is not that low blood pressure on benicar was a symptom of lyme.

Since I am so naive, please explain how Benicar really works. Don't forget to explain why myself & so many others have experienced transient dizziness that coincided with blood concentrations of antibiotic & is nil at the start, increases (as bacteria are killed), & then disappears despite being on the same (constant) dose of Benicar.

Benicar is a VERY targeted drug with a VERY well understood mechanism of action with respect to blood pressure reduction.

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B R H
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quote:
Originally posted by cave76:
Ms Stiles' first sentence set off some 'warning' flags for me. After plowing the rest of the article, those flags were still there.

***I was exposed to L-form bacteria at an early age.***

What a strange sentence. What L-form from which bacteria?

[bonk]

I'm very happy for anyone who has gotten better with MP. But not everyone has and some have had negative consequences.

Who cares what L-form or from which bacteria? Don't you just want it dead?

I agree that not everyone gets better on MP, but in my opinion, that is far more likely due to their inability to follow the protocol. It's certainly not an easy process to go thru.

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oxygenbabe
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Ay yay yay...your last 3 posts aren't even worth me addressing.
Good luck. I will try to continue to bring up the risks of the protocol when I notice threads on it.
QED

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B R H
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quote:
Originally posted by johnnyb:
Marshall should do some more studies to see if you could substitute niacin or another vasodialator for the benicar. Sounds like a good idea, Yan, but unless he tests it out, we can't be sure.

I have trouble tolerating any meds for very long, and the benicar would probably be no exception for me. Supplements and herbs I do better with.

The appealing part of the MP is the low dose abx- it makes sense that if you weaken the bacteria a bit and let your immune system "get them," you don't need to hit your body with high doses, and you will not get as many nasty side effects.

The sucky parts are the sunlight issue and the benicar, which I am scared to take. So far, even low dose beta blockers REALLY mess me up. Benicar is an ACE inhibitor, I believe, so I don't know how I would react to it. Heart symptoms make you think twice before incorporating any new med into the mix.

I would assume Marshall is going to continue to research his protocol, to see if other options besides benicar are effective. If it DID work with niacin or another OTC product, it would make it easier on the doctors as well, since they'd just have to prescribe low-dose mino....

- JB

Benicar is an ARB, not an ACE inhibitor! COMPLETELY different drug! The angiotensin properties are not the most important. The ability of the drug to activate the vitamin D receptor (VDR) is.

Marshall uses cutting edge & proven molecular modeling techniques to guide the choice of drugs. The results have a level of mathematical certainty that simply cannot be obtained with subjective clinical studies alone.

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B R H
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quote:
Originally posted by oxygenbabe:
Ay yay yay...your last 3 posts aren't even worth me addressing.
Good luck. I will try to continue to bring up the risks of the protocol when I notice threads on it.
QED

Thanks for sharing your scientific insight.
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B R H
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quote:
Originally posted by Geneal:
While I am glad for whomever gets well by this protocol,

I have to admit....it is not for me.

I appreciate the information and the discussing both pros and cons of

Such information.

BTW, I have a neighbor (CDC positive for Lyme) that was considering this treatment...

She was already severly deficient in Vit D.

I encouraged her to read up on it.

We all want to get well.....desperately.

Glad you did well with this.

Hugs,

Geneal

I am glad you have an open mind but being skeptical is good too. I remain skeptical MP is a cure to guard my health although my skepticism wanes as I continue to progress just as MP predicts.
Posts: 246 | From Grass Valley, CA | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
B R H
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quote:
Originally posted by johnnyb:
quote:
Originally posted by B R H:
Benicar is an ARB, not an ACE inhibitor! COMPLETELY different drug! The angiotensin properties are not the most important. The ability of the drug to activate the vitamin D receptor (VDR) is.

Marshall uses cutting edge & proven molecular modeling techniques to guide the choice of drugs. The results have a level of mathematical certainty that simply cannot be obtained with subjective clinical studies alone.

Ok, oops.
All well and good, but I STILL do not tolerate many drugs (especially heart-related ones) well, and so there it is... can you ask Marshall if he is willing to check out alternatives to Benicar?

I am glad the MP works well for you. Other protocols work also. I don't discredit your method, but try to keep open-minded to other ways to skin this cat.
After all, you DID have to do the "regular" Babesia treatment, right? And you said it helped you.

- JB

I'm not sure what argument could be made to try other drugs besides Benicar. What other drug has similar properties that warrant consideration? Does the drug you are thinking of have molecular models available (the math describing the drugs for computer simulation)?

I'm totally open-minded to other treatments that show objective evidence of progression to cure. I have learned so much over the years though that it's hard to take some treatments seriously. I don't go out of my way to bash other treatments but I will point out advantages of MP where appropriate. I have tried quite a few other treatments before MP, so I do have direct experience to draw from.

Yes, I definitely had some objective improvement with the treatment for Babesia.

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yanivnaced
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BRH:

I was wondering if you can attribute Marshall Protocol's effectiveness to one particular thing.

Is it the Benicar?
Is it the Vitamin D reduction?
Is it the Cycling of Bacteriostatic abx?

Of course it's probably the combination of all of the above. But if you had to do just one it's probably the 3rd.

The reason I ask is I have been reading up a lot on cycling of low dose abx and I think Marshall might have hit upon something huge with that concept alone.

The way I see it, it's like a boxing death match. Let's say you go hard on your opponent, he'll curl up into a ball and be impervious to further injury. Continuing at a hard pace would be a waste of your own energy and health since you cannot do further damage to him when he's in "cyst" form.

So once you've dealt him the initial injury, back off and let him come at you again, in a slightly weakened state, but with his guard down. Now attack him again and see him curl up again. Repeat this over and over until he has no more fight left in him.

My analogy is simplistic but I think that's basically Marshall's theory of pulsing every 2 or 3 days at low dose - to progressively chip away at the bacteria rather that beating up on a curled cyst to no avail.

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B R H
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quote:
Originally posted by yanivnaced:
BRH:

I was wondering if you can attribute Marshall Protocol's effectiveness to one particular thing.

Is it the Benicar?
Is it the Vitamin D reduction?
Is it the Cycling of Bacteriostatic abx?

Of course it's probably the combination of all of the above. But if you had to do just one it's probably the 3rd.

The reason I ask is I have been reading up a lot on cycling of low dose abx and I think Marshall might have hit upon something huge with that concept alone.

The way I see it, it's like a boxing death match. Let's say you go hard on your opponent, he'll curl up into a ball and be impervious to further injury. Continuing at a hard pace would be a waste of your own energy and health since you cannot do further damage to him when he's in "cyst" form.

So once you've dealt him the initial injury, back off and let him come at you again, in a slightly weakened state, but with his guard down. Now attack him again and see him curl up again. Repeat this over and over until he has no more fight left in him.

My analogy is simplistic but I think that's basically Marshall's theory of pulsing every 2 or 3 days at low dose - to progressively chip away at the bacteria rather that beating up on a curled cyst to no avail.

I like that analogy & have thought along those lines myself. You're much better at making analogies that I am. There are also studies supporting the use of low-dose pulsed bacteriostatic antibiotics for CWD bacteria.

I should emphasize that I really do believe it is the combination of all of the above though. This is simply the most logical conclusion considering all the MP patient reports over time & my own personal experience too.

Posts: 246 | From Grass Valley, CA | Registered: Jun 2007  |  IP: Logged | Report this post to a Moderator
   

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