In their quest for an effective treatment, many Lyme patients take resort to methods that have not been tested on efficacy and safety. One of those methods is the so-called "Salt & Vitamin C Protocol", which seems to be quite popular, despite the fact that the primary source of this protocol, the site http://www.lymephotos.com, contains a lot of questionable information and strange pictures, accompanied by wild speculations; and despite the fact that the authors of lymephotos.com wish to remain anonymous.
When people are confronted with this, you regularly hear the argument that the site lymephotos.com must be genuine, because the authors don't sell anything. The site even has the following statement at http://www.lymephotos.com/update.html:
quote:Lymephotos.com is not a business. It produces no, zero, zilch income and this was by design. We have no connections to, do not endorse, and do not really enjoy others trying to profit monetarily from our work. Our site exists only to inform and help. If we change our policy you will find such changes prominently and plainly stated on this site itself. And if you have any ideas for how we might alter our site to help you feel free to write!
The owner of fettnet.com is Marc Fett (AKA firefox), who gives the impression that he has no connections with lymephotos.com, but has only refined the protocol. Marc Fett seems to "profit monetarily" from the protocol, though, because people have to pay $29.95 to gain access to an "Advanced Resource Section", which includes a "How-to" eBook:
quote:What is the Advanced Resource Section exactly? In addition to this eBook, the Resource Section is for references, research and updates on an ongoing basis to assist in enhancing and making the research protocol the most effective possible.
What is the cost? The cost of the Advanced Resource Section is $29.95. It is intentionally meant to be low-cost so that anyone, even those on limited funds, are able to participate and benefit. It is basically the average price of a bottle of supplements. Proceeds are intended toward organized trials of the research protocol, with the goal of getting it broadly disseminated and seriously lab-studied. To sign-up now, click here.
Also interesting is the statement that fettnet.com acts as an "interface" in forwarding the findings of lymephotos.com:
quote:The Lymephotos site was established by private individuals who found, after a long, unsuccessful and debilitating effort at antibiotic treatment for lyme, that a particular research protocol yielded positive effect (alleviation of symptoms).
The full discussion and presentation of this protocol is given on that site and we encourage that it be read carefully in its entirety.
The individuals at that site have stated there that they have presented their findings but wish to remain anonymous. This research site acts as an "interface" in forwarding the findings, conducting further research and as a "clearinghouse" for lyme strategies in general.
Although the authors of lymephotos.com wish to remain anonymous, one of their names is mentioned several times on the "Lyme Strategies" forum: Nancy Stone, who registered lymephotos.com. In April, 2007, Marc Fett wrote in a message found on http://health.groups.yahoo.com/group/lymestrategies/message/50721:
quote:Thought y'all might be interested in a note excerpt from one of the Lymephotos's founders of the S/C protocol, my dear friend, Nancy
So, Nancy Stone is friends with someone who seems to profit monetarily from her work? That's odd, because the statement on lymephotos.com says: ``We have no connections to, do not endorse, and do not really enjoy others trying to profit monetarily from our work''.
There has also been a Nancy Stone who posted on the newsgroup sci.psychology.psychotherapy several years ago. It could be a different person, but she started a very striking thread called "why testimonials are unreliable" in March, 1999. In her first post she wrote:
quote:Following is an excerpt from today's listing of science results in the news, provided by the listserv generated by Sigma Xi, the scientific honor society. I think it illustrates the dangers of relying upon untested remedies. It also illustrates that anything can gain testimonial support, no matter how ineffective.
Nancy
-----------------------------------------------
VITAMIN O PRODUCTS ARE FRAUD, AGENCY SAYS from The New York Times
The Federal Trade Commission has accused two companies of bottling salt water, labeling it "Vitamin O" and selling it as a dietary supplement for $10 an ounce. The agency said the companies claimed that the product would treat cancer, high blood pressure, lung disease, headaches, infections, colds, flu and other ailments.
In advertisements in USA Today and other newspapers, and on the Internet, the companies -- Rose Creek Health Products Inc. and The Staff of Life Inc., in Kettle Falls, Wash. -- have asserted that their product "purifies your bloodstream, maximizes nutrients, eliminates poisons and toxins."
A testimonial on the companies' Web site, supposedly from someone with lung cancer, emphysema and heart disease, states: "Three days after starting the Vitamin O, I threw my cane away. In November, we went to Arizona and I bought myself a bicycle." http://www.nytimes.com/yr/mo/day/news/national/science/sci-fraud-vitamin.html
In her second post in the same thread she wrote:
quote:When someone wishes to make lots of money without providing value, why bother pouring saltwater into jars? You can make just as much money talking without the hassle of manufacturing any product. The main drawback is that people are more suspicious when there is nothing concrete being given them for their money. Thus the need to invent some hocus-pocus that will make sense unless you inspect it too closely. You tell me why an anecdote is useless when it comes to testing pharmaceuticals, but not when it comes to talk therapy. Do you think people are less accurate in monitoring their physical states than their mental ones?
Nancy
Now, doesn't that apply just perfectly to lymephotos.com and fettnet.com?!
Posted by tailz (Member # 10014) on :
Some people benefit from the salt/C protocol.
And since in order for any treatment to be accepted by mainstream science, research needs to be done - and considering such research costs money - why pounce on these people for making a profit on those that choose to become part of their study? How will we ever know if it works or not?
Modern treatment methods are not without a price, and an EXHORBITANT one at that.
I'm sure all of my doctors, pharmaceutical reps, etc... have gone on many a glorious vacation due to profits made by treating me via 'proven' scientific methods for depression, anxiety, fibromyalgia, chronic fatigue, etc... usually with drugs that cause some other illness that also requires a drug to treat.
Posted by SForsgren (Member # 7686) on :
I personally know people that have benefited from the protocol and also know of doctors that I respect that recommend the protocol for use with their patients. I did it for about a month with an increase in blood pressure that resulted in stopping the protocol. It may not be for everyone, but it does seem to help some.
Posted by Marnie (Member # 773) on :
This combination (mineral + lots of acids) produces hydrogen...which impacts our pH.
In that respect...good to a degree. Our blood is supposed to be slightly alkaline in order for the "acidic things" to work.
Vitamin C binds to zinc (zinc lozenges are just that...zinc + vitamin C).
And Bb does indeed have zinc fingers.
It is the Na that concerns me.
Bb's motility DEPENDS on NaCl and it appears the glutamate receptors impact that channel (open).
Yes...Na compounds CAN and DO destroy many pathogens.
This is why we "salt meat" to preserve it...so bacteria don't begin to "digest" the meat...break it down and cause it to turn rancid.
But meat is PROTEIN.
And...
Unlike most bacteria, Bb cannot digest gelatin (contains amino acids - building blocks of protein). It doesn't contain proteinases to break it down. Bb cannot utilize the amino acids in gelatin 'cause it can't break it down.
Bb does grow in agar...it prefers sugars and fats.
Bb triggers US to provide the proteinases to pave the way for it....collagenase and elastase esp.
Posted by johnnyb (Member # 7645) on :
Ok, so crossing the streams is bad?
- JB
Posted by Greatcod (Member # 7002) on :
Some people are helped by sleeping a lot. Lyme is also a disease that cycles somewhat, and that makes it difficult to determine objectivly what "helps" and what doesn't, making testimonials somewhat suspect. I think Just Me has done a good job documenting that the "discovers" of this protocol are not what they advertise. Actually, to me, ingesting large amounts of salt is rather risky. And I don't accept the idea that any and all alternative providers are as pure as the driven snow. That's moronic. If they are selling a product of service and earning an income, however "natural", they have a complex agenda. Its true of conventional medicine and its true of the "naturals" too.
[ 12. September 2007, 05:24 PM: Message edited by: Greatcod ]
Posted by AlisonP (Member # 7771) on :
johnnyb,
I cannot remember the last time I laughed so hard.
Heck, I'm *still* laughing!
Listen...do you smell something?
Alison
Posted by TerryK (Member # 8552) on :
It is incorrect to think that you can look up a person by name on the internet and think that you are getting a specific person without any proof. It is not appropriate to then quote someone and attribute that quote to a person just because the name is the same. Searching google here are the number of results for Nancy Stone:
Results 1 - 10 of about 2,490,000 for Nancy Stone.
How many Nancy Stone's do you think might exist in almost 2.5 million results??
I've had the same experience as Scott. A very well respected medical professional seems to think that the salt/C protocol is possibly appropriate for some people.
To make the argument that a person can't tell if they are better or not does not make sense. Do you say that if someone improves on abx. No, certainly not.
Ingesting large amounts of abx are also risky but I am under the care of a doctor so I am doing it. The same applies to salt/c in my view.
P.S. JustMe, care to give me your real name so I can do a google search and tell you what you've said over the past few years.
Terry
Posted by hiker53 (Member # 6046) on :
Salt/C does help some, but M.F. at lymestrategies is profiting. His money is not going to research as he once claimed. He now says it goes towards the time it takes for him to research and answer questions and make phone calls to help people. (and give away a few supplements). He has done no real research and the polls I posted should have ended yesterday, but I have no access to them as I am banned from the site for pointing out the dangers to some of the protocol.
If you do the vit. C /salt protocol, please ramp up slowly and have your kidney function checked as well as your blood pressure. It is not something to mess around with. Hiker53
Posted by oxygenbabe (Member # 5831) on :
I try to keep an eye out for posts about salt/c to warn people of the kidney and cardiac issues associated with it, for some folks. Also high blood pressure, sure, but the kidney and cardiac damage is what concerns me and I experienced some kind of kidney problems in spite of bun/creatinine being normal. You don't have to have changes in those to harm the kidneys. For instance people taking fleet phosphosoda for bowel cleanse before colonoscopy can have kidney damage visible on autopsy even if they didn't go into kidney failure (which some do). My concern is that bun/creatinine are not good enough measures. As for cardiac damage, lymies with CFS type symptoms who may have gone into some kind of decompensation where the heart is concerned, or have diastolic heart dysfunction or other cardiac vulnerabilities, could really get into trouble with it. In addition, I've seen people go into hypothryoid states, leaching out their iodine with high quantities of salt, and not even realize the link.
The warnings are not posted. That's the problem. And many people get hoodwinked, innocently enough, because these seem to be innocuous (salt, you sprinkle it on your food every day; vitamin C, Linus Pauling took 18 grams a day).
Posted by GardenLymer (Member # 6008) on :
I've never done the salt/C thing - but as a gardener who dunks my slugs & snails in a jar of salt water, and watches them die instantly it does make me wonder about the possible die off of our bugs on the combo. It also makes me wonder what else it might kill in my body.
I do have low blood pressure tho - so maybe it's a good 1 for me, lol
Also, I think most of us lymies are pretty in tune w/ our bodies and know if something is making us better or not - even w/ the lifecycle factored in.
For now, I'm just going to continue to go heavy on the sea salt, hope my BP rises a bit from it, and do visual imagery of a few spiro's melting while I enjoy my dinner. Posted by treepatrol (Member # 4117) on :
Too much of any salt is bad wether its magnesium or table salts or potassium salts all can cause moderate to sever problems.
Posted by Just Me (Member # 11827) on :
quote:Originally posted by hiker53: Salt/C does help some, but M.F. at lymestrategies is profiting. His money is not going to research as he once claimed. He now says it goes towards the time it takes for him to research and answer questions and make phone calls to help people. (and give away a few supplements). He has done no real research and the polls I posted should have ended yesterday, but I have no access to them as I am banned from the site for pointing out the dangers to some of the protocol.
If you do the vit. C /salt protocol, please ramp up slowly and have your kidney function checked as well as your blood pressure. It is not something to mess around with. Hiker53
Thank you, Hiker53.
Can you point to writings of M.F. that confirm this?
Posted by 5dana8 (Member # 7935) on :
Not trying to bash the salt & c protocal because I have read some people have been helped by it...
Just want to add be careful with too much salt if you have a problem with fluid retention & joint pain.
Too much salf for me gave me fluid retention & the bags under my eyes where really huge. It also made my joint pain worse because I was retaining too much fluid.
Posted by Greatcod (Member # 7002) on :
There was a guy here recently who wrote that he had be pretty much cured by drinking his town's water, because it contained over the limit levels of arsenic. He was not trying to sell anything, just share his experience. His thread was pulled, probably because of fears that people would "try this at home". People cured themselves of syphilis 100 years by taking arsenic and mercury. If they didn't kill themselves. Hiker 53 wrote " I am banned from the site for pointing out the dangers to some of the protocol." That banning is criminal behavior. Not posting warnings is criminal behavior. Seriously.
Posted by Greatcod (Member # 7002) on :
This from the Lymephotos site-
"Question: Can anyone use the salt and vitamin C treatment? Answer: We see no reason not to try the protocol, no matter how old or young. The dosage should be relative to body weight. Therefore, if one was going to put a small child on the treatment, they might want to reach a 4 to 6 gram total on both the salt and C. Remember, drink plenty of water."
So not only no warnings, but an assurance of safety. Nice.
Posted by hiker53 (Member # 6046) on :
Just Me,
I have personal e-mails from M.F. which confirm where the money is going, but I will not share them. Hiker
Posted by CaliforniaLyme (Member # 7136) on :
I didn't have anything to do with that thread being pulled re arsenic but I am glad it is gone because so many of those people treated with arsenic came down with rare cancers years later!!!!!!!! Maybe the person killed the thread himself!!! Possible, too!!!
Posted by jamescase20 (Member # 14124) on :
Maybe with low dosing of salt and super high C would fit and not be too risky. And do a Pulse inbetween abx breaks.
Posted by doc (Member # 14471) on :
newbie here ,id like to c some more input here on salt/c. i started doing it early dec .it has helped some with the fog, with knee pain a bit . started slow, seems like about 10 gr. is all my body is ready to take at this point . i havent been dx yet ,but pretty sure (all the syphtoms). had the wife to a llmd 2wks ago.still waiting on the tests. shes had (FIBRO 5yrs). hope to be able to have myself tested. next time. ($ $) done tons of research these last 3 mths. hope were on the right track. thks , doc (just a nickname)
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