The Hocus-Pocus of the Salt & Vitamin C Protocol

Topics with information and discussion about unconventional diagnostic and treatment methods, and unconventional views.
Martian
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by Martian » Thu 18 Apr 2013 11:08

Camp Other wrote:
rlstanley wrote:.

Well, this 'protocol' is yet another LymeLand winner that's been around now, what, over 6 years?

Nunc est bibendum

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The question is why?
Amongst other explanations, here's also one interesting explanation contributing to it: Quack remedies spread by virtue of being useless.

Camp Other wrote:Phyllis Mervine has warned patients about how risky it is and mentioned patients who have been harmed by it. I think other advocates have also warned patients about it. You would think patients would listen to them if no one else?
Where did you see Phyllis Mervine warning patients about how risky it is?

Camp Other
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by Camp Other » Thu 18 Apr 2013 17:15

Camp Other wrote:Phyllis Mervine has warned patients about how risky it is and mentioned patients who have been harmed by it. I think other advocates have also warned patients about it. You would think patients would listen to them if no one else?
Martian wrote:Where did you see Phyllis Mervine warning patients about how risky it is?
Hard to provide evidence, unfortunately. I found a small part of the post lifted and reprinted here: http://www.remedyspot.com/showthread.ph ... C-Question but not the entire thing.

Reason I can't provide the evidence is that someone asked about it on a mailing list which has a closed membership - and the information on it about the dangers of salt and Vitamin C was passed on to me blind. (There was more info given than in the link above, including stories about patient who had heart and poss. kidney problems - do not recall all the specifics.)

The thing about all this discussion about some treatments being harmful and not evidence-based? Patients on mailing lists and in support groups have the same kind of discussions among themselves as well. I often get the impression that some members of LNE think that Lyme disease patients are entirely ignorant of the risks of such treatments and completely suckered in by predatory snake oil salesmen. One can argue that, but there is a flipside: A number of patients are informed about the risks and harm that can come to them, but are so desperately sick they figure what the hell, they will try something outside the box anyway.

This is one huge reason why more treatment research is needed. The more tested effective and safe treatments there are, the better off everyone is.

rlstanley
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by rlstanley » Thu 18 Apr 2013 19:53

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CO:... I often get the impression that some members of LNE think that Lyme disease patients are entirely ignorant of the risks of such treatments and completely suckered in by predatory snake oil salesmen...
People get suckered in much more easily with the widespread enabling & outright marketing of these crap treatments and 'protocols' in LymeLand. The driving force in LL is the enabling environment fostered on many forums, and the dissing & censorship of people who dare suggest or warn against these things.

Suscipit pagus.

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Camp Other
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by Camp Other » Fri 19 Apr 2013 0:04

rlstanley wrote:.
CO:... I often get the impression that some members of LNE think that Lyme disease patients are entirely ignorant of the risks of such treatments and completely suckered in by predatory snake oil salesmen...
People get suckered in much more easily with the widespread enabling & outright marketing of these crap treatments and 'protocols' in LymeLand. The driving force in LL is the enabling environment fostered on many forums, and the dissing & censorship of people who dare suggest or warn against these things.

Suscipit pagus.

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Oh, I understand - and you're absolutely correct. A number of forums are prime stomping grounds for snake oil promotion - both by patients and by (unfortunately) people posing as patients or those who are "close to patients" when they really are just shills.

I wanted to point out that mailing lists and in-person support groups tend to have less of this element and some lists and groups have an almost reflexive response to tell those selling supplements and odd treatments to kindly dump their spiel or leave the forum - or face being reported to admin. But this varies, and the largest forum of them all (LN-USA) tends to allow discussion of any treatment under the sun - often without any caveats or discussion of genuine risks.

I am aware that LN-USA readers (at least some of them) probably view LNE's forum as being one which censors alternative treatment discussion but does not censor anything negative about doctors - while here on LNE, some readers probably view LN-USA as being the exact opposite.

I don't think discussion of alternative treatment is censored here, though. It's more like a majority of members here find the claims of those pushing alternative treatments to be dubious.

On my end, it really depends on the alternative treatment and the claim made. If you say "massage cures Lyme disease", that's an unproven claim, and there is zero science to support it. If you say "massage helps you deal with the symptoms of Lyme disease" that may be true - if one looks at which symptoms massage treats which have been researched which overlap with Lyme disease. Overall, most people take it at face value that massage is at least relaxing, and that alone can help you deal with symptoms/life/coping. Okay, I accept that - massage is relatively safe and probably a good thing; it won't hurt unless the massage therapist is clueless/overbearing.

rlstanley
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by rlstanley » Fri 19 Apr 2013 0:32

CO:

...I wanted to point out that mailing lists and in-person support groups tend to have less of this element and some lists and groups have an almost reflexive response to tell those selling supplements and odd treatments to kindly dump their spiel or leave the forum ....
No. As a support group leader for a decade, I found that purveyors of questionable stuff were quite aggressive to get involved in the group to rope in the desperate. This became worse later on when people started realizing that major bucks could be harvested from Lyme patients. I'm not talking about simple massage or supplements in general either. These people came there to MARKET their strange wares or have patients do it, cheer it on. And I personally was solicited to help get patients for a number of dubious practices. I got sick of what was developing and left.

As for people being 'well-informed' and making smart choices, here is a prime example of a well-educated person--a doctor--doing a scam treatment and what happened to him: http://www.lymeneteurope.org/forum/view ... 1284#p8841

snippet
...People can't make decisions based on what someone considers the best for them. Did the doctor
who died actually see all sides to this picture when he made a decision, or was he actively recruited on the internet because the controversies were made difficult to find?...
Yes, LymeLand is well tilled, tended and harvested.
...I am aware that LN-USA readers (at least some of them) probably view LNE's forum as being one which censors alternative treatment discussion but does not censor anything negative about doctors ...
Where's the censorship here? This place is tough for the craptitioners because they get called on the carpet. One can't sell his bunk easily here although people do try from time to time.

Homo homini lupus
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Camp Other
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by Camp Other » Fri 19 Apr 2013 6:06

CO:

...I wanted to point out that mailing lists and in-person support groups tend to have less of this element and some lists and groups have an almost reflexive response to tell those selling supplements and odd treatments to kindly dump their spiel or leave the forum ....
rlstanley wrote: No. As a support group leader for a decade, I found that purveyors of questionable stuff were quite aggressive to get involved in the group to rope in the desperate. This became worse later on when people started realizing that major bucks could be harvested from Lyme patients. I'm not talking about simple massage or supplements in general either. These people came there to MARKET their strange wares or have patients do it, cheer it on. And I personally was solicited to help get patients for a number of dubious practices. I got sick of what was developing and left.
I think it depends on which groups you are involved with and which mailing lists you are on. Certainly some groups DO have aggressive marketers showing up shilling their wares or patients try to do so on their behalf. Understand too that my sample size is limited in terms of any in-person support groups which I have attended (which I haven't in a long time now, primarily because I think I've learned as much as I can from them and think more research is key - otherwise we will continue to be stuck in the same place).

Mailing lists can vary highly, and if you are on, say, certain mailing lists which are about chronic illness in general or immune disorders and Lyme disease patients are a subset of the patients there, it seems like those lists are more willing to vet people and warn people if they try to promote a product that has no evidence to support it (especially if it's a hard sell) compared to some of the Lyme disease support lists which are chronic Lyme disease patients only.

I think chronic Lyme disease mailing lists tend to accept more alternative unproven treatments because that IS all there is and it fills a void because other than antibiotics (and antimalarials for Babesia) there is no other recommended treatment.

It's an act of desperation to try alternative treatments. I sympathize with anyone in that position, having been desperate myself. At the same time, some alternative treatments aren't worth the effort of trying and are a waste of money if not likely to make you sicker or worse.

I think that if other safe and effective treatments were to be studied and supported, more patients would be willing to try them instead of the unproven treatments. This is one reason why I think a study on the use of low dose naltrexone for chronic Lyme disease patients should be conducted - the drug itself has a good track record of little risk of side effects, and at the dosage naltrexone has been given to fibromyalgia patients at Stanford, the risk would be even lower. Naltrexone has been around for ages. But no one has done this study for chronic Lyme patients yet - quite possibly because there isn't money in it; there's no new patent involved.

One of my frustrations regarding ILADS is that they could probably conduct a low dose naltrexone study in conjunction with a university right now, but it hasn't happened... and yet quite a number of chronic Lyme disease patients have been prescribed it off-label and have reported improvement while taking it.

Sounds great - but let's try it with patients who are also not on a ton of supplements, herbs, and pain meds (you can't even try it while on opiate pain meds and have to completely get them out of your system first anyway) to remove confounding variables.
rlstanley wrote: As for people being 'well-informed' and making smart choices, here is a prime example of a well-educated person--a doctor--doing a scam treatment and what happened to him: http://www.lymeneteurope.org/forum/view ... 1284#p8841

snippet
...People can't make decisions based on what someone considers the best for them. Did the doctor
who died actually see all sides to this picture when he made a decision, or was he actively recruited on the internet because the controversies were made difficult to find?...
Yes, LymeLand is well tilled, tended and harvested.
Someone like Bachnysky is a serious problem. He killed people. He was negligent. He was irresponsible with people's lives.

ICHT is a dangerous treatment, and I could see how dangerous it was as soon as I read about it and knew what it was. No one should be doing it. Far as I know, no one is offering it any more and if that is correct, it should stay that way.

I put someone like Bachnysky in a class all of his own of someone using an alternative treatment because it is so dangerous, because he killed people, and because he is a criminal who scammed a lot of people.

I can't say the same thing about every doctor who suggests and/or uses alternative medicine to their patients. There are levels and degrees of things being problematic and risky; I don't think taking artemisinin or a few Chinese herbs now and then or getting acupuncture or massage is anywhere near as problematic as the fraud and harm Bachnysky caused.

About the worst most people can say of most TCM practitioners and massage therapists is it didn't do anything for them. Some would argue patients experienced a placebo effect, some would argue some TCM/acupuncture works on a narrow set of conditions, and some think the evidence is thus far inconclusive but it will eventually be clearer if it works and when. (I've seen the "What's the Harm" website for TCM and acupuncture, and while they are not risk free (is anything?) the risks are relatively small. We might as well not get in the car today because our odds of being in a serious accident are higher.)

Camp Other wrote:...I am aware that LN-USA readers (at least some of them) probably view LNE's forum as being one which censors alternative treatment discussion but does not censor anything negative about doctors ...
rlstanley wrote: Where's the censorship here? This place is tough for the craptitioners because they get called on the carpet. One can't sell his bunk easily here although people do try from time to time.

Homo homini lupus
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I didn't say there IS censorship here - reread what I said above. I said it's more like a majority of members here find the claims of those pushing alternative treatments to be dubious.

And Homo homini lupus? That is true, man does prey on man. But man also is sacred to man, and one hopes that those who are skilled and caring doctors and healers of all kinds will be there to help patients. Homo sacra res homini I could see that skill and caring was evident in the many doctors, surgeons, and nurses who helped those wounded from the Boston Marathon bombing.

rlstanley
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by rlstanley » Sat 20 Apr 2013 2:27

CO: I think it depends on which groups you are involved with and which mailing lists you are on. Certainly some groups DO have aggressive marketers showing up shilling their wares or patients try to do so on their behalf. Understand too that my sample size is limited in terms of any in-person support groups which I have attended (which I haven't in a long time now, primarily because I think I've learned as much as I can from them and think more research is key - otherwise we will continue to be stuck in the same place).
I ran a plain vanilla, in-person and phone support group. I did it for a decade. I was in touch with many groups throughout the US; we helped each other to help others. I know what started happening when Lyme patients started looking like prey for all sorts of stuff. And mailing lists? You can bet that certain entities wanted them; it made me feel dirty. I felt that the patients' and their doctors' privacy should be respected and worked for it until the solicitation became too disgusting and fending them off took up too much of my time.
CO: ...I put someone like Bachnysky in a class all of his own of someone using an alternative treatment because it is so dangerous, because he killed people, and because he is a criminal who scammed a lot of people.....
I don't. I bring him up because what happened with him was that the LL community enabled him to do what he did. That has not changed.

http://www.lymeneteurope.org/forum/view ... =12&t=1284

part of introduction:
This was truly a low point in LymeLand where a 'perfect storm' of enablers & phoney patients used websites, newsletters--the whole nine manipulative yards--to push an eye popping illegal scam by a 'doctor' who didn't even have a medical license. It had been revoked in 1990 because of a serious criminal conviction.

He had spent 8 years in federal prison for using the same scam substance DNP in weight loss clinics, and he came right out to use it on cancer patients and Lyme patients. Even though factual information--including legal documentation--was made readily available to patients on popular newsgroups--it was deleted and censored, sometimes within minutes of the posts. Sci.med.diseases.lyme was then used to record as much as possible....

...I'll post some tidbits because it is a good history lesson about how LymeLand deals with medical fraud: it not only embraces it but gives it a home. And, you can pretty much get away with murder, literally. In fact, after this guy caused the death of a patient, an M.D., you can still read about those who support him.

For sure, if you don't have a medical license and were convicted on serious charges and imprisoned you'll find that doesn't seem to bother your enablers.

Do I expect people on the whole to learn from history? Well, the quacks and charlatans know they can get away with as much as the people let them. And Bachnysky is a case study in how to do just that. Although it was before his type were invited to symposia, had books written about them, and had their butts kissed by hangers on who could make even more money promoting the scams or adding to them.

So can this kind of stuff happen again? Yes, with bells on.
CO:...And Homo homini lupus? That is true, man does prey on man. But man also is sacred to man, and one hopes that those who are skilled and caring doctors and healers of all kinds will be there to help patients.Homo sacra res homini I could see that skill and caring was evident in the many doctors, surgeons, and nurses who helped those wounded from the Boston Marathon bombing.
Of course, good people exist, but that has nothing to do with the topic at hand. Quack protocols & off-the-wall contentions in LL-- along with the enabling of them by a significant and influential portion of it's population--has absolutely nothing to do with the Boston Marathon bombing or doing good deeds and good medicine.
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rlstanley
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by rlstanley » Fri 10 May 2013 2:50

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Oh yeah, you can cure LD in 72 hours with this crap & see WHY it works:

http://www.nothing-is-incurable.com/201 ... never.html

The 72 Hour Remedy: Salt and Vitamin C Never Tasted So Good!

See article if you care.

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Pandora
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Re: The Hocus-Pocus of the Salt & Vitamin C Protocol

Post by Pandora » Mon 21 Oct 2013 4:52

http://www.bbc.co.uk/news/health-22614522

Vitamin C kills drug-resistant TB in lab tests

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