Just did a search on this forum and did find a lot of threads...Why didn't I notice it before? Will give it a try Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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oxygenbabe
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And potentially very toxic. A number of us have really harmed our kidneys, hearts, and bodies with this, even after only a few days.
Posts: 2276 | From united states | Registered: Jun 2004
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SForsgren
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I think the protocol can be helpful for some people and am doing it under the care of a doctor. I think that people that have had problems should elaborate on them. I would be interested in hearing as well. Thanks
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Any therapy that you choose should be under the supervision of a LLMD guided by lab work. There are those that claim to and may have improved with this therapy.
However I will tell you that Sodium can be toxic and have devastating effects on those that are sensitive.
You will not know if you are sensitive until you try it. If you choose this regimen do so very cautiously....
I have no experience with the therapy, just my opinion. However,I fear you may end up worst than you are now. IMHO,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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as far as " being under the supervision of an LLMD" , I have mixed feelings . First of all , many of us are disabled without insurance , or we have insurance that WILL NOT COVER the LLMD and his treatment ( which is NEVER CHEAP).
Second , What does the LLMD REALLY know? Does he know which strain of BABS , bart, or lyme you will have ? Does he know which ABX will give a knockout punch to your particular strain ?
AND WORST , does he have a secret that will keep you from relapsing from these bacteria that seem to have a million lives as you spend a fortune and take abx for YEARS?
If there is anything that discourages me here , it is the countless posts here from people who have relapsed after ABX treatment and do not know where to turn next .
I do not have much confidence that I would get cured EVEN if I could afford an LLMD and the latest and greatest ABX that big pharma is supplying . Based on the few people I know who have had the luxury of "LLMD" s, I am even less hopeful that they can make me well ( should I win the lottery.) The ones I know who have LLMD's are not cured after a few years of ABX.
I am not trying to sound negative . But touting the supervision of a doctor ( who is not affordable to MANY (!) here , and who has not cured anyone I know of , rings hollow .
In the real world most of us live in , there are FEW if any docs who will treat us , period . If we can find one it will cost a fortune, and then if we get better , it will probably be temporary .
The bottom line is that not even an LLMD has a grasp of the bacteria that plague us . It is a mystery, and we are all more or less grasping at straws to find something that will give us our lives back .
You are right that salt or water can be toxic . ANYTHING Can BE TOXIC !!!
May I also add that judging from the posts here , it seems that "LLMD"s are advocating alternative therapies as well , as members here have posted their docs are supportive of : rife, samento , Buhner protocol , etc..
There are lots of folks who have done the salt/c protocol and have not had problems . However, I am sure that ( LIKE ALL PROTOCOLS) there will be a certain part of the poulation that CAN NOT TOLERATE it , because it will cause them problems. There is no protocol that will fit everyone .
luvs2ride
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Annxyz,
I am grinning as I read your post. Well put Girlfriend!
I often feel the exact same way.
Luvs
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
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I have to respond Annxyz, and I hope that you do not believe me to be confrontational... that is not my intent at all.
My intentions where to be responsible when under taking any therapy that may alter the balance of your chemistry...
I agree with you on many points. Not everyone has the cash or privilage to have a LLMD monitor your progress. In fact for the most part you will be paying to see his nurse practioner or PA...
However it is only responsible to warn people that they can develop hypertension and cardiac issues if not properly monitored.
Recently on the news I heard of a young woman who died after partaking in a water drinking contest. My point is everything in moderation.
As to alternative medicines, I have always been an advocate of natural healing and prayer...
God Bless You,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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CaliforniaLyme
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I think this regime was started by a McSweegan to show the crazy things Lyme patients will try.
Seriously, I believe that.
Salt intake can be fatal and salt poisoning is a form of documented child abuse. No one should ever try this regime with their child because salt is indelibly associated with child abuse by CPS. With the Munchausens accusations thrown at Lyme patients, call me paranoid (and I know some will!) but I can't htink of it as coincidence this appeared the way it did on the web...
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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thank god for this protocol!!!! im not sure how i would be healing otherwise ive been sick for 10 years, and did 5 years of antibiotics that really messed my gi up quite badly. salt and c is so much better. it is also healing my gi. i tried so many things.
there are people who have hurt themselves with the salt. from what i have seen these people did not see the need to ramp up very slowly and paid for it. i herxed horribly for a long time, if i had pushed it harder i could have been in trouble. there was a whole discussion about this lately on lyme strategies http://health.groups.yahoo.com/group/lymestrategies/
table salt and even salt tablets are very toxic. this kind of salt is not natural at all.
i take himalayan mineral salt with concentrace minerals plus liguid magnesium. i use organic non gmo vitamin c powder from berries.
at this point i know much much more about treating lyme alternatively than my LLMD who has been at the top of ILADS. i gave the antibiotics a real try for a long time. for me this is what works and its non toxic, in fact its alkalizing.
Posts: 245 | From connecticut, the lyme state | Registered: May 2004
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posted
I tried the protocol for one full year according to the directions at lymephotos.com. The only thing that happened was that my seziures increased in number and I didn't know if it ws a herx or not, but I couldn't tolerate it.
Surprisingly my blood pressure went down and my sodium and electrolyte remained normal.
For me I didn't feel the seizurs were worth any long term benefits and I didn't see any lessening of other symptoms. Yahoo has the group Lyme strategies devoted to this, but from what I can tell only a handful of people have achieved complete success.
However, if you can tolerate the salt and are out of other options, why not try it. Just don't use table salt. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 10168 | From Illinois | Registered: Aug 2004
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oxygenbabe
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I have been trying to get Marc to revise his ebook (which I never read) and his guidelines, but he hasn't done so yet. I will post here what I know:
1) There is a 300% variation in salt toxicity. For some, one gram per kilogram of weight can kill, for others, its as much as three. Who knows ahead of time where they stand? Salt is known to be a serious problem for those with borderline hypertension or outright hypertension, and a low-salt diet helps prevent fatalaties. When I googled on the internet a healthy kidney clears about 5-6 grams a day (a HEALTHY kidney) and all we need biologically is 250 mg a day which is in all our foods
2) The people who've been harmed are cast aside, ignored, told they did not follow the protocol properly etc etc.
One developed high blood pressure on it so she stopped, and left the list because she felt criticized for not sticking with the protocol anyway. She has done very well with Gigi's ART style therapy and Buhner's herbal protocol.
Another developed a cardiac episode that sent her to the hospital and has not recovered her cardiac function in the last 16 months. She was on 4 grams a day. She now cannot exert herself without cardiac symptoms.
Another, who encouraged me, followed the scale up method exactly and over the course of 2 years had, off and on: severe kidney aches, foamy urine, blurry vision, carpal tunnel syndrome (new), varicose veins, cardiac arrhythmias and chest pain down his arm to where he thought he would not make it through the night. After stopping the protocol except for 1 gram (which CFSers sometimes do) he has most of the above symptoms staying with him, in addition to developing Sjorgren's syndrome. He had none of this before. He was so blinded by the rah-rah belief in the protocol that he himself ignored all those sympotms and even encouraged me, and to my detriment I tried it for four days.
Myself, I did it for four days at 8 grams (2 teaspoons) a day and ended up with severe weakness, wooziness, kidney aches and total salt intolerance. For about a month I coulnd't have ANYthing salty or I'd be overcome with a feeling of weakness and disorientation. I had to stop all my vitamin/mineral IV because they are in isotonic saline and I suffered a great deal as I got much sicker. I still haven't risked an IV because I can't even tolerate salty foods now. I have kidney aches off and on and I never even thought about my kidneys before. I have gotten much sicker. Before I did this I was able to teach two three-hour seminars and go out to lunch for instance--now I could not possibly do something like that.
I hear that on canlyme (the message board part) that they banned the subject because someone claimed they had permanent cardiac damage from the protocol. I don't know more about that and would like to.
By coincidence I talked to a friend of a friend last week who was doing 4 grams a day and ended up gaining 13 pounds and having feelings she was suffocating and couldn't breathe. She did not understand this was salt toxicity not a herxheimer.
Even people who think they are getting better in some ways have problems. For instance, this much salt, can leach out so much calcium you could get osteoporosis. Which one Australian woman who maintains the protocol has helped her tremendously, has now.
After my 4 days I had tremendous cravings for milk, I drank down a whole gallon in two days.
Someone else who did the protocol had major adrenal issues and POTS after and had to take florinef.
Others have found it made them throw up and had to stop it.
There are probably many other cases we don't hear of. After my experience I queried around and found the above ones. None of those have been listed on the lymestrategies list or even really taken into account. Over a month ago we posted about this and asked Marc to please revise the protocol to include the fact that in some it could be harmful. It looks like he's not going to do that.
Julia is right. You can develop serious kidney and cardiac issues from this type of dosing with salt. Sure, salt kills bacteria (brine) but hey, so does chlorine bleach.
Another problem with this protocol is the insistence that Morton's salt is toxic because of the fillers, but sea salt is good and healthy. The fact is, our oceans are polluted, and some sea salts are very likely to have high amounts of toxic metals from industry in the area. Nobody tests these sea salts. Its one thing if you sprinkle a bit on your food, quite another if you're taking two teaspoons a day for years. Posts: 2276 | From united states | Registered: Jun 2004
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SForsgren
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Sure - 1 gram per kilogram might be dangerous, but who is promoting that? Certainly not the protocol itself. Recently, a lady here in CA died from drinking too much water. So do you stop drinking water? I'm certainly not.
I don't disagree that people on the protocol must be monitored and blood pressure should be regularly checked.
How do we know that the person with cardiac symptoms would not have developed those anyway? How do you tie it to Salt/C? Was that the ONLY protocol she was doing?
I'm not suggesting that the protocol should be done for all people or without caution, but I do think it has helped many people.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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"Myself, I did it for four days at 8 grams (2 teaspoons) a day"
WOW that is WAY too much, thats dangerous. i started at like half a gram a day and it took me over a year to get to taking this much. you are only supposed to take a small amount and then increase a small amount when you feel totally comfortible with what you are on. i cant even imagine what that would have done to me. it would have been completely awful. i have gotten very sick from taking too much salt before.
i agree, avoid sea salt, use mineral salt. its ancient sea deposits rich in minerals. the native americans used to drink salt water.
standard vitamin c is from pesticide laden genetically modified corn. The gmo is a big issue we dont even know about yet really. also it is not natural either and a cheap extract like high fructose corn syrup. corn is used for most cheap sweeteners. this kind of vitamin c is highly acidic, and has been shown to cause free radical damage and cancer. my main source of vitamin c is wild camu camu berries from the amazon. and i have big pink himalayan salt crystals. they are rich in minerals, and i add extra minerals. it feels really good. ive noticed some things feel good on a deeper level and i know im doing a good thing when im doing it. i should add too though, that its not just natural salt and c that is turning my life around. i have a strong support system. ive been eating raw vegan organic food for 2 years and that is one of the most healing and amazing things i have experienced. i also use the kmt and find that to be very helpful. i think it really helped me get off antibiotics with the salt and c. i also drink a lot of ozonated water and try to think about everything that needs to be done to be healthy.
Posts: 245 | From connecticut, the lyme state | Registered: May 2004
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Here's what I like from what I've read... * low cost * simplicity * somebody explaining it for free
Here's what I don't like... * intensity (but I already use tsp sea salt per day by preference, they use just a tad more) * somebody else with a site wanting you to join/buy before explaining it
Also, my BP is usually 100/60 so salt isn't an issue for that reason.
I don't have any suspicions about the orginators of the salt/C protocol 'making it up' for some nefarious motives. But I do suspect the lymephotos authors have more than just lyme going on... morgellans?
They do compare their dosage to historical use of salt in the human diet...
quote:... our treatment recommends approximately 8 to 16 grams of salt and vitamin C per day depending on body weight. ... As mentioned on the site, for centuries people consumed approximately 20 grams per day due to the way foods were processed and personal taste.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Dr K also does use salt c in part of his protocal. Visti his site and take a look at the PDF file that is called something like, beyond anti-biotics.
Posts: 582 | From milwaukee wi | Registered: May 2005
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oxygenbabe
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Scott, 1 gram per kilogram can be FATAL. Not just toxic. My point there, which perhaps you missed, is that it varies from one to three grams per kilogram to *kill* you. So it surely varies that much to *harm* you.
You know, folks, you can always question these adverse events. It's amazing to me that people do that. Sure, it's *possible* that person who never had previous cardiac incidents could have had one anyway, gone to the ER, and never recovered. But since we know that salt can harm the kidneys and the heart, and since we know that folks with chronic lyme/CFIDS, whatever we want to call it, have diastolic dysfunction according to Cheney, then maybe those people should be *extra* cautious...
Sure, I did 4 days at high dose. But tell me, do we ramp up on antibiotics? Do we start with a tiny amount and slowly build up to doses that can kill bugs? The protocol suggests scale up supposedly becaue it is so profoundly impactful that it can kill more bugs than IV or oral antibiotics so you have to avoid herx...thats what is suggested here...not that in a portion of folks it is salt toxicity.
Others ramped up according to protocol and had serious issues.
It never ceases to amaze me that people will just deny these adverse reports or shrug them off with: Well you took too much too fast, or that person could've gotten this cardiac episode on their own anyway.
Some folks had: high blood pressure, cardiac arrhtyhmias and chest pain, kidney problems, edema, and so on. All symptoms of salt overdose.
Whether or not we "think" it is helpful has nothing to do with the ethical responsibility to report all adverse events, just as makers of pharmaceuticals are required to do. Or they get drugs pulled and class action lawsuis (vioxx).
Posts: 2276 | From united states | Registered: Jun 2004
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I agree that caution should be used in much of the stuff that we do. For myslef, I have most of what I take tested out with energenic testing.
In the case of the salt and C, about 4 grams is all that my systems needs to get a benifit. For what its worth, the salt C tested 70% effective across the board for the lyme and co-infections. that's better results I have seen for some of the ABX that I had tested.
I also know that my body could not handle the full dose of what the salt protocal tries to build up to. Even in testing, the reactivity of even 8 grams would cause to many side affects for me.
I have and do get herxing with the salt C program. I only use it through specific periods of my treatment when it come up in testing.
Posts: 582 | From milwaukee wi | Registered: May 2005
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"The protocol suggests scale up supposedly becaue it is so profoundly impactful that it can kill more bugs than IV or oral antibiotics so you have to avoid herx"
after doing many years of antibiotics and IV, and doing over a year and a half of salt and c i would say that has been my experience. i had to go up slowly on the iv antibiotics and some of the other drugs too. i lost consciousness a few times because i was given too much. i know other people having serious issues with antibiotics like this too. antibiotics can also be very harmful. i agree we need to know the possibilities. it seems that you did your own protocol, not the salt and c protocol as it is written.
Posts: 245 | From connecticut, the lyme state | Registered: May 2004
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I'm eager to try this protocol, because it's so easy to start!!
Just read all the posts for this thread, and I'll make sure I take caution. Fingers crossed! Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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posted
I herxed on the Salt/C protocol and that was at 1/4 tsp Real Salt 1x per day. Gradually, since November, I'm up to 1 tsp per day with equal amounts of Vit. C. I had a major herx that was similar to sinus congestion.
I've been doing the Salt/C since November and just had alot of blood work done. Interesting to note that my kidney function is better now than it was before doing the salt/C. My blood pressure is excellent, too.
Also, about 10 years ago, my cardiologist told me I needed more salt.
My question has always been if the Salt/C works alone or only after you've had a course of antibiotics. Does anyone know?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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oxygenbabe
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Some followed Marc's protocol, others didn't. Lymephotos had no such protocol.
I've done my best to warn others. Can't do much more for you folks. Good luck.
Posts: 2276 | From united states | Registered: Jun 2004
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oxygenbabe, my mom has high blood pressure and I know as a fact (since childhood) that she needs to avoid salty food.
I'm still young and my blood pressure is normal (and was actually low when I was very weak and suffered from insomnia a few months ago). So I'll use much caution on this inexpensive salt/v c protocol.
Your kindness is surely appreciated! Again, thanks a lot!
Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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SForsgren
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Are we also offering similar warnings on the negative effects of antibiotics? Do we think that those also do not carry similar issues?
I fully support oxygenbabe's position on being cautious. It could be dangerous. Antibiotics can be as well in some cases. So similar caution may be appropriate.
The difficulty with this protocol is that most people will not have a doctor support doing it and thus will do so on their own without appropriate guidance and monitoring. That is where I definitely support the "proceed with caution" message.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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oxygenbabe
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Justag, you're very welcome.
Scott, antibiotics do have warnings. The quinolones can cause tendon damage in a vulnerable subpopulation, so people know to report any tendon pain. Rocephin can cause gallbladder sludge/damage, and some lymies have gone ahead with it anyway and had to have gallbladders remove. Diflucan is known to cause liver problems in a subpopulation and so monthly liver tests are recommended.
There are *no* warnings I can see on lymephotos or in lymestrategies on salt toxicity. None. Nada. I do not consider it the equivalent of a drug with some known side effects that you are taking under a doctor's care. The protocol is hawked as a panacea. A number of people have been harmed because they think of salt as innocent, we sprinkle it on our food after all and certainly Vitamin C is pretty safe. Those people thought salt toxicity symptoms were herxes. You can research salt toxicity by google, pubmed or on toxnet and you might be a bit horrified to see the reality.
It doesn't mean some folks can't take it, but even the revered Dr. K should be more careful in suggesting it, I think.
Posts: 2276 | From united states | Registered: Jun 2004
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I bought "Vitamin C With Rose Hips" 1000mg capisules. I don't know which brand is the best, but you can google and a lot will come up...
Posts: 196 | From atlanta/norcross, georgia | Registered: Feb 2007
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SForsgren
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I use Klaire Labs Multielement Buffered C. It has much less digestive distress to use a buffered C in my experience.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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GiGi
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Salt & C can be very tough to take if you start out too high. Some people cannot handle it at all.
No matter which medium you use, you are killing critters. No matter who you are, if you have lived a time on this planet, you have been exposed to a lot, lot more than merely Lyme bacteria and a few microbes.
That exposure (to heavy metals, chemicals, other microbes/parasites, fungi, mold,) is one of the reasons the possible Lyme infection hit you so hard to begin with. But I will bet my last penny on it ------ none of you suffers only from Lyme infections.
Lyme Disease is a multi-factorial problem. Your body was most likely already crying for help before you had the Lyme exposure. Were you a smoker? Cadmium!!!!!!!!!!!!!!! Job exposure. Amalgams. Hobbies. My husband spent his twenties on ships fighting a WWII - his long bones are or were loaded with lead (from the pants - he never painted, but he was exposed to the fumes) ---
Any residual damage from accidents? A fracture? That's where the neurotoxins accumulate.
Mercury has been shown to go through six layers of latex gloves!
So if you attempt to kill microbes, you are setting in motion an avalanche of other neurotoxins = from heavy metals, from chemical exposures, from viruses, from parasite infections, from fungi, from mold. I have never, never, never seen it happen any differently when any of the killing modes, no matter which, were employed. Damage or remainder of an accident?
So whatever you do, you need to start out gently. But most of all, you need to be prepared to mop up the fallout that comes along with microbial killings.
If you don't, you can call it whatever you wish - damaged kidney, heart problems, damage to any organ/system. If you kill microbes and are not prepared for the fallout of heavy metals and other neurotoxins, yes, your kidney may start to show up as a problem - it definitely has a problem filtering heavy metals. Heavy metals are easily shifted within the body --- so don't ever undertake any "killing" unprepared for the fallout. Use the mop up agents I have often posted about to get the neurotoxins out of the body as quickly as possible. A tiny amount of mercury in the brain has catastrophi effects on the rest of the body. A little bit in your biceps has relatively little effect.
Once the kidney is full with mercury, it cannot excrete the mercury. It doesn't sit in the excretory part of the kidney cells, It sits in parts of the nephron that is incapable of detoxing itself. (DMPS works on that aspect of mercury toxicity).
Salt & C is great if done right - but definitely not the way this fellow on that other website promotes it. He has no clue of the damage he is doing to some people.
In my experience, there is no one/single modality that does it all - that will cure your Lyme. If you do abx only, you ought to have found out after a couple of years.
This is from our experience and that of hundreds of Chronic Disease (which includes Lyme in most diagnoses) patients that I had the pleasure of getting to know.
On the run, take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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oxygenbabe
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Hi Gigi, welcome back. Hope you had a good vacation.
You're right about microbes.
But genetically, some can't handle high dose salt, and not just 5%. I'm convincd it's more at the levels recommended in this protocol. Kidney and heart are the cardinal organs damaged by salt--not necessarily by killing microbes at all.
And by the way, we clued him in to the damage, so he has a clue, but he's doing nothing about it. He hasn't revised his guidelines.
More later.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Give me a break, where is reality on this board. Humans love salt!
Most Americans are consuming nearly 4 grams of salt per day(National High Blood Pressure Education Program).
Based on the 1993 Food Consumption Study the average sodium intake of Singaporeans is 3.046 grams per day in women and 3.937 grams per day in men, with the highest mean intake of 4.187 grams per day on Chinese men.
For Britian: On average, UK salt intakes are approximately 10.1g per day in men and 7.7g per day in women but range from 4 to 18 g per day in men and 3 to 14g per day in women. (British Nutrition Foundation 1994)
So don't whine about 1 gram of salt killing someone.
If salt can help kill Lyme bacteria....Great!! Should you be careful and monitor your blood pressure....of course! Use your common sense.
But don't try to compare salt to the toxicity of antibiotics. Except for a few salt sensitive folks....this protocol may be the only way to fight Lyme without going to the poorhouse. WE should consider ourselves extremely fortunate to have this as a treatment!
By the way, Dr. K recommends 3 weeks on and 2 weeks off as a way to protect yourself. Gigi has some great posts on this!
Ernie
Posts: 546 | From Cascadia subduction zone | Registered: Mar 2002
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posted
natural mineral salts are easier on the whole body, i wouldnt take anything else. im taking completely natural pink himalayan salt crystals. as well as added minerals to balance it out.
Posts: 245 | From connecticut, the lyme state | Registered: May 2004
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clairenotes
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I took energen "C" (lite) and didn't feel any adverse effects. Regular or non-buffered vitamin C was difficult for me to tolerate in large doses.
Claire
Posts: 1111 | From Colorado | Registered: Oct 2006
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oxygenbabe
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Ernie, permanent cardiac damage, high blood pressure, kidney problems, permanent damage, are not 'whining.' Unbelievable. Who cares if it's cheap? So is chlorine bleach.
As for humans love salt, that doesn't mean it's healthy to take high doses.
Posts: 2276 | From united states | Registered: Jun 2004
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hardynaka
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I did like they proposed. I got tinitus (don't know if this would have happened anyway). It took me long time to get rid of tinitus.
I herxed awfully with salt. I couldn't take all those vit C they recommended (low bowel tolerance). Maximum 2 grams/ day.
I clearly got high blood pressure with salt at that amount (6 grams/ day). Clearly. I did the test 3 times, the last time, it took me a week to get it normal again after stopping salt. This includes insomnia, extreme jitterness, nervousness non-stop!!!
I never suffered from high blood pressure for so long, except for those days.
I don't think it's a good way to get rid of borrelia. The dangers are way too high (cardiac dangers, plus the whole problem around, extreme fatigue that is caused due to high blood pressure issues). At least for me.
I feel that there are lots of other ways to kill critters that are safer for me, specially long term. Buhner's herbs are one way. KMT another.
Maybe the problem was that I didn't use the right mop up agents at that time (first protocol I did, unexperienced...).
What I don't like in that site is that no warnings are there. If you get in trouble, YOU ARE WRONG, not their protocol.
The 'easy' side of the protocol is encouraged, but anyone can see that everybody there takes LOADS of cleansing and parallel stuff to get on. Only VitC as detox seems very insufficient. It looks more like a 'sale banner' for the protocol.
I guess what's to be criticized is the lymestrategies site, mostly. If they compiled success stories, they should compile bad reaction stories too.
in Buhner's forum, people come to say they can't tolerate this and that herb, this and that brand etc. That's great. There's no censure like in lymestrategies!
I find this business 'idea' of selling rights to access the files (20 dollars every year!) a shame. The fundings would go for 'research', they say!!!
Which author of a book would ask to pay every year some money to get access to the same book?
Which reseacher would ask money from their guinea pigs to continue doing research on them??
If salt can give you good results, it's fine. But that site... I would think twice. Even though there are some very nice people there, I would be suspicious of the site manager, who doesn't seem to accept any critic.
Why dont' you guys that use salt/C don't create another Yahoo group independent of Marc? Then we would know the real truth about salt impacts on people.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
He knows that I did not herx---that in retrospect what we thought were "emotional herxes" when I was at five or seven grams, were Vitamin C allergy and that I do fine with pharmaceutical grade Vitamin C--I told him all this by email. But he's apparently not listening. I was very open with him. Anyone interested in a high quality Vitamin C, google the Vitamin C Foundation. It was there I discovered most Vitamin C's have fillers.
Secondly, he chides me for not taking his advice about a hemmorhoid. I cured it with hot sitz baths every 20 minutes, which was on the advice of a prominent alternative phyhsician who is a friend, and haven't had one since (this was a couple years ago). Why would he bring that up? He's apparently desperate to malign what I say.
Yes, he's charging for the "protocol" and yes he's practicing medicine without a license with all that advice he gives, especially in the context of a product for sale...and Marc, if you're reading this, do a little research on commercial speech versus free speech.
If anybody is harmed, whether they follow scale up or not, they're considered dissidents (their word) for warning others.
Looks like he's not going to change his tune at all. Plus he's never explained how, if the osmotic shock theory (you're saturating hyour blood/tissues at the upper level of 'safe' salinity) is what destroys the microbes, how 1 gram, a mere 1/4 teaspoon, can cause osmotic shock...the blood/tissue levels would not rise from that amount. The science is shoddy. In fact it's psuedo science.
I hope others take heed. As I said, there's a 300% variation in the fatal dose of salt, which says to me there's a wide variation in salt tolerance, period. And for those who are on one side of the genetic bellcurve, it could be dangerous. So he doesn't care if some folks have, according to their own reports, permanent cardiac damage. If it works for some folks but harms others, he just refuses outright to put any warnings to vulnerable subpopulations in his ebook or files. It's all about scale-up and herx.
It's the panacea, of course.
And people are still repeating this falderol about sea salt being 'safe' and 'good' salt, and nobody got my point that if you're taking a teaspoon or two a day for months and years, and the sea salt was from a polluted area of the ocean (fish, after all, are rife with heavy metals) you could also be consuming too much polluted salt.
That's just a side note.
I didn't say that it doesn't work for some people. But the clincher was when my friend's friend got on the phone and was doing salt/c, two half-teaspoons a day, scaled up according to protocol, and was having feelings like she couldn't breathe, suffocagting, and had gained 13 pounds of water weight. I mentioned that to my holistic doctor today and she just shook her head and said, "Yeah, she was going into heart failure."
First do no harm....
Posts: 2276 | From united states | Registered: Jun 2004
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oxygenbabe
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posted
FYI...after I had trouble with salt/c most recently, I checked around a bit on other groups and saw other postings about trouble with it. I asked one person on CFS Experimental (backchanneled her) and here was her response to me; I sent all responses I had on to Marc, and thought he would sincerely investigate these and hoped he would revise his protocol to include warnings, not make the accusatory, defensive post he did on his list cited above. Here's her email, just so people understand, *some* people:
Just saw your email..have not been reading, much lately, on the board. Disastrous is probably accurate, regarding Salt/C..at least my case, but when one tries to warn others, the defensive walls appear, as I know you have experienced. Also, I do have high blood pressure, which is out of the norm for other CFIDers, which, in my case, is due to insulin resistance/Metabolic Sydrome.. but I did monitor my blood pressure, during this experiment on Salt/C, and it did not rise too much, above normal..blood pressure is well controlled on antihypertensive drugs. Also, I have the mitigating factor of being in perimenopause, so I know that my estrogenic production is probably low, and thus, do not have that protective mechanism any more, for cardiac function. Also, I have had ME for nearly 30 years, and I think Cheney has found that in long term sufferers this is when the cardiac problems surface. I will try to communicate my particular experience. I need to preface this with the following..I was improving in my ME after using a vast variety of different treatments, mostly, nutraceutical, including Transfer Factor, before embarking on Salt/C, and had not had any cardiac problems. I, gradually, ramped up from 1 gram to 4 grams, within a month's time, but after one month, I experienced---a sudden cardiac episode, which I can only describe as my heartbeat wildly intensified, and I could not stand up or walk for several days, afterward (I am not a medical person). For over a year, I have not been able to do much, at all, physically, or mentally. The above experience drove me to consult with a Cardiologist...and she thought I had total blockage of the cardiac vessels, based on my Stress Echo, and sternly indicated that I must have a Heart Catherization...or I might be gone from this world. . As I have been on a very good diet and all the nutraceuticals that one uses, I did not believe I had atherosclerosis. According to Cheney, regular cardiologist would jump to the conclusion, when a CFS person is presented, but I did not know that, at the time. .. have not really regained the stamina or heart function, I had prior to Salt/C. I feel like I am in the disease process, which Cheney describes, that one could go towards congestive heart failure, if you push too much.."the event horizon" Cardiac symptoms occur, now, whenever I exceed my tolerance. The only treatment that has helped has been applying the Sinatra Protocol/Sinatra Solution for cardiac problem or Myhill's supplement regime. This seems to be a permanent condition, too. As far as, herxing, goes..that is not what happened, here. I have herxed on many treatments, temporarily, and from which, I had made the most gains, in improvement. I have been off the Salt/C for one year, 4 months, yet the cardiac symptoms, continue. I hope that my experience will prevent someone else from encountering this path...maybe, I would have had cardiac problem, eventually, anyway, but I had no indication of symptoms of that prior to this event.
Posts: 2276 | From united states | Registered: Jun 2004
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D Bergy
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posted
I am not familiar with the lymestratigies site since I ruled out salt-C as a preferred treatment for its potential problems.
It would seem to me that if you are trying to find out the Risk/Reward ratio for an experimental treatment you would want all of the user experiences. Not, just success stories.
Once these experiences have been reported for a period of time any possible adverse reactions should be prominantly displayed. It also should be described as an experimental treatment.
I do not see it as a disservice to warn people who may be already physically comprimised about possible side effects of a treatment. How can they make an intelligent decision without all of the available information? That is what the Pharma's attempt and sometimes succeed in doing. If you want to know the latest example just do some in depth research into statin drugs.
We are always better served by the truth whether we like it, or not. We are all responsible for promoting the truth to the best of our ability.
I did not hear anyone bashing Salt-C. Just the skewed way in which one site operator presents the information. I think that distinction was lost in the discussion.
As someone who uses Rife treatments quite often I appreciate any info, positive or negative that can help me learn more about it. I would assume the people using Salt-C would also prefer to be informed.
Just my two cents.
D Bergy
Posts: 2924 | From Minnesota | Registered: Aug 2006
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oxygenbabe
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posted
I am reproducing here posts from Kurt, on the small yahoo message board salt 'n c; Kurt suffers from lyme/CFS and has a blog on various therapies, and tried salt/c for two years, ramping up correctly. When Kurt speaks of Melissa, she is a woman who, coincidentally or not, went into severe MS after trying salt/c. ----
Edie,
I appreciate your thought, and agree that a warning is the first step towards a more safe therapy. And it is easy to say 'we all know the risks', but I assure you that when YOU are the person being injured by a therapy where people are making an assumption of safety if the protocol is followed correctly, the lights will go off for you as well about the importance of safe practices with experimental therapies.
When Melissa was injured a year ago, there should have been major warnings and adjustments added to the protocol. Instead her case was picked apart and debunked. She believes the salt caused her to become crippled, before salt/c she could walk, after salt/c she could not.
Now other people have had to get hurt. And because these new cases are also being picked apart I worry that even more people will have to be hurt before the others will 'get it' that salt/c needs better safety measures than just 'listening to your body.'
Yes, we all know the risks, but if you knew positively that someone became crippled from salt/c, would you have second thoughts? If you know someone sustained heart damage, would you have second thoughts? If you knew several people had kidney damage, would you have second thoughts? If you knew several people developed new eye problems after salt/c, would you have second thoughts?
One of the experiences many of us on these alt med lists share is that we despise the deceptions in modern medicine, particularly related to disclosure of true risks. People need to know what can happen if they have underlying problems with sodium regulation, as Jill apparently has and I may have. People need to know their odds of success, no change, failure, and harm from salt/c. Why has that data not been tabulated and shared by now?
I'm sad that you are only 'bemused' by this, I am not nursing some type of grudge, and do not have ulterior motives. The fact is that multiple people have been harmed by salt/c, and that must be disclosed to protect others, and to help the protocol become safer. That is my motivation, like it or not. For now this is not about blaming for what happened. I know I chose to take those salt doses. But had I known the real risks I may have chosen otherwise.
Also, I realized that I had a liability if I did not inform others, starting the moment I was informed of harm coming from salt/c. I did resist the idea that salt/c had caused harm at first, Jill can attest to that as I argued with her for several weeks about that point. Then when I realized it had caused harm to myself as well as her, and also had hurt others, I had to accept that the protocol was at fault to some degree, because in some of the cases the protocol was followed precisely. I also realized that even if the protocol was not followed properly, these people WERE taking salt/c and they WERE harmed, and I could not prove that salt/c was safe even if the protocol was followed perfectly. Therefore I should not waste my time analyzing and trying to debunk the cases any more at that point. So I quit arguing with Jill and posted the warnings to LS and to my blog because we do not fully understand the risks and I can not assume that the protocol is safe even if followed perfectly.
Here is another part of my 'agenda' with this topic. Once a person is informed of risk with something like this they have a legal as well as ethical responsibility to warn others. Had I not posted what I had concluded I could be liable for hiding information.
And for the record, I never meant that the protocol should ONLY be done through professionals. Only that it would be best that way, if there were some type of professional supervision.
--Kurt
Second post:
I do not want to give the impression to anyone that I was on full dose of salt/c for two years, I was not. I did my best to ramp-up to the rule-of-thumb dose of 1g per 15lbs, and actually achieved that three times, but all three times that dose caused a severe CFS type crash that was NOT a herx, but some type of system damage, 'salt intolerance' perhaps. It was like a bad post-exertion malaise with lingering pains and problems in the heart, kidneys, eyes, and nerves. The first ramp-up took about 9 months, I ramped up at 1g per month. Some of the 'kidney herx' symptoms subsided for awhile, and I learned to manage the other symptoms with supplements. I now realize that was a major mistake that led me to go too far with salt/c, using adjuncts to manage symtpoms. Phil Rich is correct about that point, that the adjuncts can be a problem, although I do not know if he says that for the reason I mentioned. So to make the protocol safer, I believe it will be important to add signs and symptoms of salt intolerance, so people do not attribute every possible pain to herx, and if a person has SI, they should not expect to reach full dose, they may benefit from a lower dose, or maybe should not be on salt/c.
Also, I just realized I also developed Sjogrom's syndrome from salt/c. I had some nighttime thirst at times, but never had the almost constant extreme dryness before salt/c, dry eyes, severely dry throat, etc., particularly at night. That has persisted after going off salt/c, so yet another side-effect for me. What salt/c did that was good was that it gave me more energy, some adrenal stamina. I believe my adrenals actully are partly healed from salt/c becasue I do not need as much adrenal support now off salt/c as I did before salt/c. What salt/c did that was bad was that it seemed to accelerate my CFS in some ways. Now I realize there was some good and bad in salt/c for me, and I am still trying to find a way to separate them and have some ongoing benefit. Intuitively I still sense that I need a little salt/c at times, but only take .5g or maybe 1g doses, and only once or twice a day, and that seems to help the adrenals still, without the negative side-effects.
Also, to tag Jill's comment about the psychology of staying on something bad for you for too long. In retrospect, although the encouragement from others on LS was a major factor influencing me to keep trying, there was another reason I did not want to stop even when presented with the evidence of multiple people having severe reactions to salt/c. That was my own participation over the years on LS, encouraging people, suggesting supplements they might try, etc. These lists can give a person some positive emotional feedback at a time when they are looking for a lifeline. This must have met some need I had, and that was hard to give up, hard to acknowledge that I had been wrong about something as important as the safety of an effective therapy. So there are several ways these small online communities can blind a person to the truth of what is happening in their own situation. I saw this on LS in some of the the negative responses to my posts, people are not willing to separate these two very different issues - safety and effectiveness - because that takes away from their hope for a cure. Moral of the story - 'hope' is the most powerful drug of all... so use with caution... we need to have hope, but must be carefully to let 'evidence' help direct hope's pathway. ----
I hope Kurt's wisdom and his suffering will add to people's understanding of the protocol and its possible dangers.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
Where there is suffering, there's a buck.
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CaliforniaLyme
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posted
Yes- it is amazing how people will make money off of sickness and death- and how no one tends to speak up about it!!!! My experience- people would rather believe in a happy lie than a rotten truth!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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NO LLMD NO INSURANCE NO DIAGNOSIS for about 7 months -
Salt and Vit C were the cheapest commodity and they helped me get through the neuroborrelosis and 7 prior months of diarrhea.
Lots of research, precautions, knowing your body, moderation can help to ensure safety.
Isn't interesting that we are supposed to be under a doctor's supervision but those same docs cannot diagnose lyme, interpret lab tests or treat lyme disease.
Please do not misunderstand me - there are people who may not tolerate salt or vit c and should consult with their MD for chemistry labs, cardiac, renal and organ disfunction.
end of my two salty C Cents
mags
Posts: 259 | From California | Registered: Mar 2006
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quote:Isn't interesting that we are supposed to be under a doctor's supervision but those same docs cannot diagnose lyme, interpret lab tests or treat lyme disease. ~ Mags
Makes me feel kind of crazy just thinking about it.
-------------------- When I lost my grip on Faith in the maze of illness, Hope gently clasped my hand and led on.
RuthRuth Posts: 478 | From California | Registered: Jan 2007
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Health
Frequent Contributor (1K+ posts)
Member # 6034
posted
I did the Salt C while I was OFF antibiotics, and I did herx with it, and it did take away my pain for month or so,
but I still relapsed. I became sooo sick and had to go back on antibiotics.
So, for me, the Salt C was not strong enough, or the right thing for me. I do know some that had it help them alot.
Trish
Posts: 1250 | From Canada | Registered: Aug 2004
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hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Oxygenbabe, thanks for having posted that. Such stories will NEVER appear in lymestrategies due to censorship.
I don't attack salt as a killer. I just don't think the lymestrategies site is 'clean'. It plays with people's desperation trying to sell an easy-to-do protocol.
NO ONE in the forum got better with salt and vit C ONLY. Just read the posts, people are taking LOADS of supplements to get going, like in ALL PROTOCOLS.
There's no easy to do solution in lyme (if abx didn't hit it fast, it'll be complicated to deal with lyme under any protocol whatsoever).
The easy-to-do facade is just sales marketing.
Someone just told me I AM LISTED THERE AS SUCCESSFUL STORY! I am not a member anymore to check.
I clearly quit the forum because salt didn't fit my body, even if I think it killed stuff.
I didn't want to trade borrelia for cardiovascular diseases. Nope. It's TOO dangerous. That's the reason I quitted, and I clearly posted that a few times. So I can't be in any successful story there!
I guess I start to understand how they got their 'successful list' to be so long...
Again, the critic here is NOT against salt as a killer (it seems to work well for some people), but against lymestrategies forum. There are wonderful members there, but lack of critics makes me think...
I repeat again, why don't you guys that use salt make another salt forum without censorship, without any money involved? Only then, you'll know what salt cause to people. It's easy to open a forum in yahoo. For free, of course!
Another woman from Buhner forum (Julie) said recently she got edema on her legs with salt. She tried all suggestions they gave, the edema came back, she had to stop salt.
She doesn't criticize the site, but if she had the info that many people react similarly to her and the dangers of that condition to her health, her opinion could have been VERY different.
No criticism in a forum = danger. No matter which forum, which subject.
Do you think it's 'clean' for a "researcher" to ask money (every year) from his 'patients' to test a treatment on them??
I clearly don't. I was a researcher myself, not in the medical field, but no matter, this looks unethical enough. Researchers publish papers, books, reports, go to conferences and are accepted by peers (other researchers, professors, professionals). Real researchers don't create forums and ask money from their guinea pigs.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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oxygenbabe
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posted
On Lymestrategies, a woman named Ann posted about her problems on the protocol. A dialogue ensued. LS as a group, nor Marc, was receptive to the idea that it was a harmful protocol for her, pure and simple. Here is her first post. In terms of the ebook, Marc later says that was a paypal error and anybody who asked for a refund got it. He also contends that he is running at a net loss with the income because of the time he spends. Only he knows if this is true. In any case, I'm posting her post her not because of those questions but because of her reaction to the protocol.
In [email protected], "nnspence" wrote: > > 1. Where does the money go that Marc charges for his e-mail book and > why would anyone buy the e-mail book more than once when it doesn't > change? Why does Marc automatically deduct it from your pay pal > account without asking if you have subscribed the previous year. > > 2. If there is a file on success stories (and really there seem to be > very few total success stories), why isn't there a file on failures > of the salt/C protocol? by the way I know of at least one "success" > story posted that turned out not to be a success. The person quit > salt/C did several other protocols and is almost healed. > > While this protocol may work for some, I feel it has done more damage > than good to me. I did the protocol for one year following the ramp > up instructions and stopped ramping up at the amount appropriate for > my weight. I backed off when the herxing got too extreme. Problem > was I never got a break from the herxing. While on the protocol I > developed Sjogren's Syndrome(dry mouth, eyes, etc), which has not > gone away. My seizures have gotten worse, I developed an ulcer, my > hormones went crazy and I had to have a hysterectomy. I developed > thyroid problems and adrenal problems. > > Would I have developed these problems anyway? Perhaps. But it seems > very weird that they happened while I was on the salt/C protocol. > > When I talked about my herxes Marc even suggested I did not have Lyme > (I tested positive at Igenex and Bowen). No one suggested I stop the > protocol and it is no one's fault, but mine that I went a whole year. > > I truly question how many people have gotten long term improvements > with this protocol and considering I see the same people posting as I > did 18 months ago, I doubt very many people have. > > I truly hope healing comes to everyone on this board, but I also hope > that some of you who have stuck with this protocol and have not > improved look elsewhere for your health. God Bless. Ann S. >
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