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Thread: has anyone here ever tried water fasting?

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    Karen;
    Years ago, a friend of mine told me to drink that ionized water. It was called "Willard's Water"...I used it on my malar rash when it would flare and it did make it feel better (for about 20 minutes).
    Like you, I am too through with all of these propoundants of fad diets to cure Lupus. They are all over the web and I just cringe whenever I read them and their false testimonials! Uggh Arrgh @!# @$#!!

    Saysusie
    Look For The Good and Praise It!

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    Hi all,
    When I first got diagnosed my doctor was right up front with me about listening to people on the internet that say they have a cure for Lupus. He told me that unless he tells me that there is a cure that there is no cure. I chose to listen to him. I try to eat right and exercise and such.

    Kathy
    Lupus for many years. Like most of my life. Sjogrens that started at 35 and Scoliosis, Spinal Stenosis, Degenerative Disc Disease, Osteo-Arthritis of the spine, Ankylosing Spondilitis, Periferal Neuropathy, mild CP and now just recently diagnosed with PA. I had a disc replaced in December of 2007.

    Medications:
    Plaquenil, Sulindac, Imuran, Celiac diet, Tramadol and B12 shot once a month.

  3. #23
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    It would seem the old time "Snake Oil Salesman" is still alive and well. I mentioned before that I've gone round and round with people on the internet claiming to have a "cure" for Lupus. Most of them don't care that their suggestions could cause someone serious harm. I looked into the background of one of the more obnoxious peddlers of these bad diets, and found that this person didn't even graduate from high school. OK, I have an extensive background and education in the field of Mechanical and Chemical engineering, and I have absolutely no idea whatsoever how to cure Lupus. I wish I did. These people generalize, use fancy word combinations, and appeal to the fear and desperation many of us feel, or have felt about being diagnosed with a chronic, incurable, and sometimes fatal disease. Most of us see through these frauds. For those who might feel inclined to try some of these fasting diets, please ask your G.P., your Rheumotologist, and any other specialist you may be seeing, what they think of going on such a diet before deciding to do it. The ultimate choice in the end is yours, but do you really want to risk your health on the delusions of a high school dropout? I hereby step down from my soapbox again. End of rant! Thanks for listening.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Lupus treatment with Quesadillas. Now I like that idea! I wonder if my Dr. would give me a prescription for them. Preferably the chicken and pepper-jack cheese variety, with fresh guacamole on the side. Hmm, this could hold promise! Maybe a Corona with a wedge of lime could boost the beneficial properties of the quesadilla. Mmmmm, I'm getting hungry.

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    Me too. Growling...loud....especially washing it down with the Corona...

    L.,
    Oh

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    Default A different position

    I realize this thread is old, but I felt the issues are timeless....


    Of course with all mysterious health conditions, where little is known about its origin and treatment options, the opinions on how best to treat / cure the condition vary greatly. This is commonplace for all of the less-researched and less understood health maladies. It was true 50 years ago, 100 years ago, and long before then. I have always stated, the most you can hope for in life (as it relates to health problems) is your health maladies are of the more common, more understood, more treatable, easily diagnosed and highly researched conditions. Unfortunately, lupus does not fall in this category.


    So when treatments have a poor track-record of success, its human nature to look elsewhere for relief / treatment / cures, etc. The simple fact that 5 different doctors will often give 3 different diagnosis and then 4 different treatment protocols demonstrates how helter-skelter the entire diagnosis / treatment of lupus is. The internet is loaded with stories of lupus sufferers mis diagnosed for 5 - 20 years....and treatments that vary from avoidance strategies to some of the most extreme medications which have fatal side effects.


    Do I blame Dr.'s for this? heck no. We have a capitalistic medical system in the USA, which means, diseases that have the highest number of victims will get the most research dollars, because the potential for profits are the highest. In addition, if Federal money is available for research, of course it will towards the diseases that cause the most harm to its society.... lupus is considered a very low incident disease, unfortunately. So I doubt we will see major break-throughs in diagnosis / treatment options in the near future. This makes the desire for alternative approaches even stronger.


    So IMO, its conditions like lupus, where there is little known about its origin and only a few treatment options, where some people feel compelled to take charge of their own health. Putting 100% faith in a single doctor is a risky proposition.... of course, like all things in life, a lot depends on the severity of the disease, the lifestyle impact, the age of the person, other health conditions, etc. It makes sense for a young very healhy person who recently acquired lupus to search harder for a "cure" or a better remedy, than a person in their 60's who is also suffering from cancer, arthritis and heart disease. For this person, controlling lupus flares with minimal side effects is a sensible approach to their lupus vs. more extreme treatments mentioned above. So, one must apply some common sense to each case. It's senseless to throw everyone in the same pot, such as, "listen to your doctor", or "there is no evidence that such a treatment will work" etc.


    The other statement you see with all these less researched conditions is "there is no scientific evidence that supports the use of this treatment".... now, to me, and I have a strong scientific background, I often find this statement completely misleading. Most people confuse this statement with ..... such a treatment has failed clinical trials and offers no benefit vs. a placebo controlled group. While on occasion this is true (but usually not stated this way) in most cases, it's not true. Instead, the statement simply means, there has never been any controlled tested performed on this treatment. So an equally true statement can also be said, i.e. "there is no scientific evidence that demonstrates this treatment is not effective". So this is the other view of alternative remedies...similar to glass half empty, or half full, both are really true, neither can be disputed. However, again, one must apply common sense here.... the simple fact a potential remedy has no scientific testing, is not a license to kill yourself drinking poisoned Kool-aid. So again, common sense is mandatory... but the point is, not having any scientific testing, is not proof that given treatment will not be effective for you. If we waited for every alternative lupus treatments to be scientifically validated, well, we will all be long dead by such time.


    In addition, if you look back on medical wisdom, there is tons of cases where the word of Gospel from the medical community, we know today, was dead wrong. And you don't have to go back that far, 30 years is plenty. Heck, in 1980, a clean angiogram meant you had a clean bill of health.... all cardiologist agreed, it was a consensus of position. Today, with better imaging technology, we realize that an angiogram in 1980 missed 95% of what would be caught today. Now, is this the Dr.'s fault? Is it the imaging companies fault? No one person is to blame, its simply a case of the diagnostic science at its early stages. The point is, a good % of what any Doctors advised in years gone by has been wrong / mis diagnosed / mistreated, etc..... often as a result of poor science. Of course, I am not referring to broken bones, visible conditions, etc.


    This also spills over into diagnostic markers for certain conditions such as heart disease...first it was cholesterol, then it was HDL/LDL ratio, then it is the size of the LDL globules that matters most, and now, it's the C-Reactive protein tests that is the single biggest factor. So how right was your Dr. about these statements for the past 30 years? Today, giving out advise of just 25 years ago would be considered mal practice. And these are the most highly researched medical conditions in the world..... so compare that with lupus, and it may help you better understand where lupus falls in the "how valuable is current medical information" heirachy.


    In regards to Lupus, I have read many many testimonials on the web regarding diet and lifestyle changes that have put people into 100% remission. Now, do I believe everything I read on the web? Of course not.... but I evaluate what a persons motives might be, and how many of the same testimonials I read, which do not have a profit motive. With enough numbers, and no profit motives, its hard to overlook hardcore testimonials.... I often think, if I found a cure for my lupus, would i want to share my story on the web, yes, I would. Of course, this is no assurance such remedies will work for you, but IMO, quite often it does help us achieve some orientation on options we can consider when we are not happy with the current state of our condition.


    By searching lupus book reviews on Amazon.com, you can find a lot of unsolicited, no profit motive testimonials on certain remedies. Also, if the remedies have little or no risk, (again based on each persons state of health, age, etc.), I would suggest if you want to improve your condition bad enough, sometimes you should consider experimenting with such remedies.


    In my life, I have visited some of the top doctors in many fields for several different health conditions.... and in more than half the cases, I have avoided radical surgeries, treatments, etc. and finally "cured" or completely contained the condition with my own approaches. This is a result of being open minded and understanding the old adage..... if you give a problem to a carpenter, he solves it with a hammer....if you give a problem to a surgeon, he solves it with a scalpel. There is a lot of truth to this adage.... it's a mind set...


    Doctors often rely on education from Pharma reps, diagnostic companies that sell equipment or lab services, etc. So their treatment mindset often is geared in these areas. Yes, this is one of the downfalls of a capitalistic medical society. But, this is not all bad too, sometimes, the system works great....there is many health conditions that are treated very effectively by meds, physical therapy, surgery, etc. Once again, our own common sense must lead us...


    There has been many people who have cured certain cancers, but yet, in those specific cancers, there is "no known cure." Does that mean no one has never been cured? Evidence has proved otherwise.....even though its not fully understood why, or how this occurred from certain treatment, or even no treatment. So, the purpose of this post is to offer a different position than what is offered above. In general, I think people should be careful forcing their position of..... "Your Doctor is always right" mind set on those suffering from conditions where there is not always clear diagnosis, or successful treatments / cures / relief for the condition. But at the same time, one must be careful and prudent on how they proceed with alternative approaches...... again, common sense, knowledge and close monitoring should be always be employed when straying into alternative approaches.

  7. #27
    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Hello Itryhard,

    I have to take issue with some of your statements here...



    Quote Originally Posted by Itryhard View Post
    So For this person, controlling lupus flares with minimal side effects is a sensible approach to their lupus vs. more extreme treatments mentioned above. So, one must apply some common sense to each case. It's senseless to throw everyone in the same pot, such as, "listen to your doctor", or "there is no evidence that such a treatment will work" etc.
    You are speaking in absolutes. Nobody is "throwing everyone in the same pot". Of course we listen to our various Dr's and specialists, but that does not mean we take everything the Dr. says as a fact without question. And as far as treatments, we are all open to new treatments and ways of managing Lupus, but we are not going to waste our health, time, and money on "treatments" that have no scientific proof that they are safe and possibly effective. And, in regards to "common sense", science is not in any way based on some abstract idea of what common sense might be. Scientific conclusions are based in sound method, and on valid, reliable data.

    The other statement you see with all these less researched conditions is "there is no scientific evidence that supports the use of this treatment".... now, to me, and I have a strong scientific background, I often find this statement completely misleading. Most people confuse this statement with ..... such a treatment has failed clinical trials and offers no benefit vs. a placebo controlled group. While on occasion this is true (but usually not stated this way) in most cases, it's not true. Instead, the statement simply means, there has never been any controlled tested performed on this treatment. So an equally true statement can also be said, i.e. "there is no scientific evidence that demonstrates this treatment is not effective". So this is the other view of alternative remedies...similar to glass half empty, or half full, both are really true, neither can be disputed. However, again, one must apply common sense here.... the simple fact a potential remedy has no scientific testing, is not a license to kill yourself drinking poisoned Kool-aid. So again, common sense is mandatory... but the point is, not having any scientific testing, is not proof that given treatment will not be effective for you. If we waited for every alternative lupus treatments to be scientifically validated, well, we will all be long dead by such time.
    Here, you say that "there is no scientific evidence that demonstrates this treatment is not effective.". It is not the responsibility of the patient to either prove, or disprove that any given treatment is effective. This is a logical fallacy. The burden of proof lies with the manufacturer of said treatment to demonstrate and prove that their product is safe and effective. Extraordinary claims, require extraordinary proof.

    And, the "poison koolaid" you refer to are drugs and treatments that allow us to live and carry on with our lives despite the disease. Without this "poison koolaid" as you call it, a great many of us would more than likely not be here today. I don't know where you are going with this thread, but after reading the numerous false assumptions and contradictions in your post, I have to say that I respectfully doubt the strength of your scientific background as it relates to the subject at hand.


    Rob
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    Last edited by rob; 01-03-2010 at 10:43 PM.

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    Hi Rob...


    >And, in regards to "common sense", science is not in any way based on some abstract idea of what common sense might be. Scientific conclusions are based in sound method, and on valid, reliable data.



    Rob, as mentioned previously, where scientific data is abundant, one would be a fool not to examine it. Unfortunately, as mentioned, many health conditions have little or NO "scientific data" or even tests to base decisions on. So while in a perfect world, I agree fully with your assertions, the reality is, we don't live in a perfect world, and in areas such as lupus, so little is known, so few effective treatments have been proven, there simply is not much scientific data to draw upon....



    >It is not the responsibility of the patient to either prove, or disprove that any given treatment is effective. This is a logical fallacy. The burden of proof lies with the manufacturer of said treatment to demonstrate and prove that their product is safe and effective. Extraordinary claims, require extraordinary proof.


    While trying to defend your "it must be scientifically validated" position, you make the assumption that all treatments or remedies for this condition, must come from a large well funded company with million$ in research to back its claims. This discounts the most basic remedies of lifestyle / diet remedies. What major corporation would ever fund millions in such studies, when the conclusion would offer no salable product?? You're approach seems to assume a remedy must come from "a pill based solution". I disagree with this assertion. A simple, but not analogous example is..... The best remedy to reversing lung disease for smokers - is to stop smoking. (but some back in the 40's felt continuing to smoke and taking a pill would be the ultimate solution in the future?) It took 50+ years for the surgeons general report to surface in the USA to scientifically prove this... this demonstrates how hard it can be to "prove" the obvious. So following your mind set, in 1955, regardless of how many smokers you see hacking and dieing from lung cancer, the logical assertion would be, smoking is still safe until proven otherwise.... again, this is a simple (slightly over simplified to prevent this thread from becoming a book) historical example of how far science can lag common sense. While some quit smoking because common sense prevailed over scientific proof, others like my parents, waited till the Surgeons report was issued before stopping. For me, I would have fallen into the first category of people who relied on common sense.




    >And, the "poison koolaid" you refer to are drugs and treatments that allow us to live and carry on with our lives despite the disease. Without this "poison koolaid" as you call it, a great many of us would more than likely not be here today.


    Another wrong assumption.... "Poision koolaid" is a reference to the Jim Jones incident in S. Africa, where he instructed his followers to drink poison koolaid to rid the body of evil, in which hundreds immediately died. My point was, common sense must be applied to everything.... so, if someone decides to consider alternative treatments for their condition, a sound approach is still required, vs. an extreme measure. BTW, by your definition, I currently take poison koolaid as well....



    > but after reading the numerous false assumptions and contradictions in your post,


    I am hoping you now see how you mis interpreted nearly my entire post....




    > I respectfully doubt the strength of your scientific background as it relates to the subject at hand.


    Rob, this is a never ending subject of debate, where peoples opinion differ greatly. I respect and understand your position and approach towards this subject. I can only hope you can offer the same for others who disagree with you. I know for some people, it's a tough pill to swallow. There are plenty of supporters like yourself of the "scientific validation is required for anything and everything in life". In most cases, they are close minded about other positions. They are die-hards to seeing scientific proof before believing anything. (which if available, I would feel the same way) Yet, no matter how much history continues to demonstrate that a lot of scientific proof is invalidated every 10 - 20 years (in the field of diagnosing and treating medical conditions), it will not sway certain people to keep an open mind in the future. Even some Doctors are wary of scientific studies that can often be tainted and have ulterior motives, They always believe in the current and prevailing theories of the medical community. I offered just a few examples in my previous post, which you had no comment on...


    So, where was I going with this thread? I was simply offering another position that differed from yours, which I respectfully disagree with your hardcore assertions.

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    rob is offline Super Moderator Super ModeratorEmperor of the World
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    Itryhard,

    In regards to the "poison koolaid" comment, I was attempting to give you the benefit of the doubt. I was hoping you were using the term "Poison Koolaid" to describe the meds we take, rather than making the insulting implication that we are a bunch of blind cult-like followers. By the way, the Reverend Jim Jones and his People's Temple followers were not in South Africa. They were in Jonestown Guyana, which is in South America.

    Also, you keep going back to absolutes. I do not require scientific validation for anything and everything in life. That is ridiculous. I absolutely do require scientific validation for something I am going to put into my body that claims to have an effect on my Lupus and MS. Do you not understand that autoimmune disorders are serious and can be potentially fatal? This isn't a game. You cannot just go out and ingest a bunch of unproven so called "remedies". The consequences of such behavior can be dire.

    People who push bogus products like Mirac and other so-called "treatments", do not seem to realize that they could potentially be putting peoples lives in danger. Or maybe they just don't care. Also, I make no assumptions about how big a company should be, and how well funded they are. There are corporations and companies both large and small who do scientifically sound research. And companies spend millions of dollars all the time to do research on meds and other products that prove to be ineffective. That is the nature of research. You ask why they would spend millions on studies of products that would end up being non saleable. How do they know if the product is non saleable without first doing research on it?

    We have gone round and round before with people here on the subject of unproven bogus cures, and frankly, it's getting rather old. False claims have been debunked again and again. The purveyors of this garbage always seem to come back with the same old emotional argument, the same stale talking points, and the same backwards logic. These people need to either offer a treatment that has been thoroughly tested and evaluated, or not. Put up or shut up.

    Rob

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