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Can someone help me understand please?


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My Dear Friends,

I'm frustrated. I can't understand why more folks on this board aren't interested in non-traditional therapies. I knew within 2 days after my diagnosis that traditional medical treatment offered me precious little hope for beating my disease. Both my Dr's and my web research agreed my odds for long term survival were poor at best.

Like so many others here I was diagnosed at Stage 4. So despite having had no symptoms, I was instantly inoperable and therefore officially incurable. All agreed my life expectancy was less than 6 months. I decided to begin traditional treatment ASAP and continue research looking for better alternatives for the day when traditional treatment failed me. So how is it that (it appears) most of us simply accept the dismal pronouncements of the medical community and don't even try to do better????? I base this conclusion on the small number of messages and the view counts on the Alternaive and Complementary Therapies Forum. Have I missed something here?

Perhaps this is a taboo subject. If so, tell me and I will delete this message.

Color me confused,

Dave S

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Dave,

For myself, I was diagnosed just as you, and I immediately went down the whirlwind trail of traditional chemo treatment. When that first approach concluded, I was determined to boost my own immune system and so went with diet and supplements...including lots of green tea. When there was growth, I opted for a clinical trial for orally taken chemo, which stabilized me for a while. Now I am on a chemo program which is not difficult for me; however, I always look at the alternative therapies and always appreciate the information posted about them.

I think of it all as a combination and complimentary...that's how I have always handled it with my dog, holistic if possible...traditional if I have to. There are things out there on the Internet which are not helpful and, for me, it can be overwhelming to try to weed through the information, but I definitely have an interest. I think our own immune system is the answer and, of course, traditional treatments further compromise our ability in that area. These are difficult and somewhat frightening decisions and I totally respect yours.

Margaret

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Guest bean_si (Not Active)

Dave, I've wondered too. Despite misgivings, I decided to go with chemo and radiation. But I still took my vitamins, herbs, teas, etc. The chemo & radiation obviously weren't the cure as I still have a mass on a lymph node and the mass in my lung is still there (it could be necrotic but no one is sure).

I want the best chance to support and protect my immune system so I have read voraciously on alternative medicine. I would go to an alternative medicine clinic but have not found one local that I can trust. Others, I simply can't afford or I would try them.

I do the best on my own, including creative imagery, meditation, Chi Kung (though I've been lax on that lately) walking on nature trails, listening to healing music, watching my nutrition, etc.

I sincerely do NOT believe you can stop the cancer from returning unless you pay attention to your nutrition, your immune system needs and your emotional needs.

I surely hope more people become interested in this topic.

Cat

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I’ve found this site to be pretty helpful on the supplement front. We’ve got mom on a bunch of supplements and have cut out all sugar. I’ve particularly found Cary’s info on TM (copper reduction) very interesting and Jim’s story at http://www.thecancerzone.com/pam.html very helpful. I am actually going to post more about mom’s regimen soon but I’m still researching and changing stuff. Like some others on the site I believe in combining traditional and non-traditional to hit the cancer with everything at ones disposal.

More to come,

Geoff

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Hi Dave

Like you, my mum was stage IV at diagnosis. Both my parents are doctors, so were only too aware of the implications of this diagnosis. Whilst appreciating that chemo only offered limited hope, my mum opted to do chemo, and in the meantime my dad has become a full time researcher of alternative therapies!

To answer your question, I believe that first and foremost, the reason people do not seek alternatives is that their oncologists are so scathing of anything aside from traditional therapy. In addition, alternative and complementary treatments have always received bad press (particularly from the FDA); and, for those who are researching the internet, there is such alot of contradictory information that it can be quite overwhelming. For example, the site 'Quackwatch" is entirely dismissive of everything bar surgery, chemo, and radio. It tells you that, not only will the alternative therapy you are researching do you no good at all, it will in fact, do you harm. Now, that said, how many people having had chemo and radiation feel it has done them no harm??!!

As I said, both my parents are doctors, and they find it difficult enough to sift through what might be useful as opposed to what is just garbage put our there to take advantage of desperate people (and let's face it, we are desperate!). I can only imagine how much more difficult this is for people without a medical background.

As a psychologist, I feel inclined to put forward this theory: there is a psychological phenomenon called 'learned helplessness'. A somewhat horrifying experiment was undertaken which involved placing a dog on a wire mesh floor which had a barrier erected in the middle. Experimenters put an electrical current through one side of the floor, strong enough to inflict a painful shock. The dog jumped over to the other side of the barrier, thereby escaping the shock. The experimenters subsequently put a current through the other side of the floor, and the dog again jumped the barrier to escape. Once the dog had 'learned' to escape the shock by jumping to the neutral side of the barrier, the experimenters put a constant electrical current through the floor on BOTH sides. Initially, the dog made frantic efforts to escape the shock, jumping from one side to the other, all to no avail. Eventually, he just sat in a corner and whimpered, and no longer tried to help himself. This experiment has been used to explain a variety of human behaviours, from battered wife syndrome, to the reason why concentration camps were able to flourish in WWII.

I believe there is an element of learned helplessness following a cancer diagnosis, particularly late stage. Our doctors, the media, our research on the internet, all tells us that, apart from some limited potential benefit which might be gained from traditional therapy, there is nothing we can do to save ourselves.

I hope this does not offend anyone. I actually find the people on this site are FULL of hope, and truly believe they have a chance to beat this disease. The very fact that we have found this board is testimony to that fact. I personally found this board by doing a web search on LUNG CANCER SURVIVOR. If your search was simply LUNG CANCER, you would find some very different information.

I, too, hope that more people will post in this forum. We can only benefit from the sharing of information.

Best of luck to us all!

Karen

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Dave,

I have experimented with alternative treatments as you may know, and have posted about my experiences. I must say that member's reactions have been indifferent. Some are curious and want more information, while others were both skeptical and highly critical. I certainly was not endorsing the practice of these treatments. I was only trying to share my experience....after all, isn't that what this section is all about? - "Alternative and Complimentary Medicine?" My goal was precisely to boost my immune system, and that mission was acomplished. No single magic bullet was found, but an arsenol of weapons including supplements, exercise, relaxation, humor, diet, infussions, and lots of prayer. I have now included message. My favorite! :lol: It really works circulation of blood flow and the lymphatic system. It reduces my stress, and it losens up the scar tissue from surgery, which has improved my range of motion. Again, the views expressed in this post are my own. I can only attest to what has worked for me.

Karen,

I enjoyed your post. I recall the research you referenced by Seligman on "Learned Helplessness." You are right. I also think so many of the previous generations never questioned their doctors. I am flabergasted at how manyy people in the waiting room don't even know what type of cancer they have, let alone the stage. Most people diagnosed with cancer are in their mid 50's to 70's. Many do not know how to search the net for information about their paticular disease. The don't know what questions to ask. I have noticed that it is the caregiver seeking out information, if at all. Again....just my opinion! Ha!

Take care,

Cheryl

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Guest bean_si (Not Active)

Absolutely right Karen! I haven't heard about that particular experiment but I certainly understand and believe in learned helplessness. Down here in S. Florida, most of the patients in the chemo clinic seemed to be in their 70s or 80s and sadly don't seem to be computer literate. Maybe that's why most of them seem to have NO understanding of their treatment, what it does, what type of cancer they have, etc. They put themselves in the hands of doctors and just follow.

No way! Sure I listen to what my doctors have to say but then I decide. I research. I investigate because I'm in charge. I've heard that the people who have the best chance of surviving are what doctors and nurses called the worst patients: demanding, etc. Well, that's me. I too have noticed the people on this board have all the attributes of survivors.

Cheryl, I might try that massage. I think that's what I need after too many hours on the computer writing and/or researching & too many hours painting. My posture is quite horrid.

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To all of you,

I have cancer but not lung cancer, I was told in 1999 that I was

the only one on earth with that kind of cancer and the doctors

did not know how to treat it..........after learning some computer skills

alone, I found in Switzerland a pathologist that had done research

on *glycogen-rich breast cancer* and my search started.

I am now still going strong and only use vitamins and supplements

as I am allergic to all medication for cancer or treatment.

My doctors, family and surgeon both gave me the right and approval

about all I do, as they can't help me just look after my well being.

I do not post much about it as most people are skeptical about my

approach to sickness, but for me it is working very good.

My husband after going through all the treatment the doctors wanted

him to have, wanted my help, I was glad to do it and through

18 months of lung cancer he only had 6 days that he was sick.

He never suffered from his cancer only from his broken back,

it did not save him, but made his life much easier and more enjoyable,

till the end.

After all most of the medication comes from natural things.......

Love to all.

J.C.

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Dave S.,

I for one am highly interested in complementary therapy and nutrition. Please check out my post about two or three below this one titled 'complementary and integrative' or something like that.

I feel that I have to maximize my chances of being healthy for a long long time, and after you've done the surgery, the chemo and all the medical treatments, it's time to complement your good health with supplements, nutrition and exercise.

It's not now and has never been my plan to disregard all that is offered by medical science. I will still continue to see my doctors (and it seems I sure have a lot of them) for follow-ups and first line treatment for any problem that pops up. But, as you will see from my post, I plan to visit an integrated medicine practice and get their recommendations on diet, supplements, and exercise. This will never take the place of medical science, but it will enhance it.

I plan to run all recommendations of theirs past my oncologist, but, for now, I have been doing this all on my own and I have a morning and evening pill container and don't really know if I'm doing all the right things and have all my bases covered.

I would love it if you would check out the website I referenced in my post here--it's www.blockmd.com and see what you think....

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My Friends,

Thank you so much for all the insightful and well thought out replies. I think I can begin to see the many factors involved here. Many of us think that Alternative therapies means only the "softer" things discussed here like creative imagery, meditation, listening to music, etc. and also supplementation. My simplistic mind considers these things to be largely incremental solutions to the problem. While none of them promises a total solution, they may each have role in inching toward a solution.

My definition of alternative therapy is broader in that it includes bio-chemical based strategies which have simply not yet made it to the mainstream. I'll have to admit that I have an aversion of sorts to the "softer" things too. So I can easily understand why many here are not clamoring for more "alternative therapies". I have a much easier time getting enthused about scientifically based strategies. My inclination is to embrace things I can understand and explain (some would say a more typically male attitude).

So here is my problem. I'd like to see a discussion of some of these bio-chemical strategies but where do they fit? Originally I thought "Alternative and Complementary Therapies" but there seems to be such a small volume of traffic here I wonder if this is the wrong place? The other possibility is "New Research/Treatment Options/Financial" but that forum makes a point of saying it's for traditional medicine only. Are bio-chemical based but as yet unapproved therapies tradional medicine, hmmmm?

I just read back over this and now the whole thing seems trite. I'll try using this forum for such things and see what happens.

Thanks again for your insight. Best of luck to us all, Dave S

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Dave,

As you can see from the bottom of my profile, I have tried vitiman IV's, H202 IV's, Calcium/chelation pushes, and a diflucan IV. Also, Artemisinin pills. There is a lot of information on the net, debunking these treatments- but just as much info in support. I had no side effects what so ever from these treatments. Modern medicine is quick to refute any claims that are alternative and complementary in nature, cause look at the billions of dollars spent on chemo research. Chemo as we all know, does not cure lung cancer- merely hold it at bay or reduce tumors in size. There are some interesting treatments coming down the pipeline using immunological therapy......that is why I feel this kind of treatment could be beneficial.

Cheryl

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Hi everyone, I am new to this so I am not sure if I am doing this right but here goes- My husband has just been dx with nsclc. At first we were in such shock we just accepted what the dr said and cried a whole lot and just felt doomed. It took a little while for that to start wearing off, but now we are looking into alternative treatment. We are interested in gene thearpy. We found out about one study that uses gvax. have you heard of that? also we just heard about another thearpy called tarceva. I haven't been able to get to much info on that. I asked my husbands onocologist about it today and he wasn't much help said the latest study had not been published yet. my husband is taking the tradional chemo. He is stage iv so the dr gives us no hope at all. thanks for listening.

cathy

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Cathy,

I only have 2 minutes right now but I can tell you are anxious. Go to "Search" at the top of the page and put in your gvax term you should get back a list of posts relevant to this topic. Do the same for Tarceva and whatever else you are interested in. I have to run now, but check back and follow this forum for more info on alternatives, OK?

Best Wishes, Dave S

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KarenL,

Thanks for your reply. Since your Dad is both interested in researching alternatives and an MD have him take a look at this:

http://www.canceraction.org.gg/recnac.htm

It's a brief description of a treatment protocol I am currently following. I've spoken with 2 of the principals on the research project and find them to be above reproach. They completed phase I and Phase II trials using only contributions from a benefactor whose instructions were to find a non-toxic cure for cancer. The lacked sufficient funding for phase III trials but clearly they are on to something here.

I'm using some slightly different dosing but still trying to achieve and maintain the cytotoxic plasma level of 400mg/dl for as long as possible. I'd like to know what he thinks of it. Could you let me know please?

Best Wishes, Dave S

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Hi Dave

I know Mum and Dad have done some reading on Vitamin C therapy, and have spoken to a doctor here who practices it. I will ask them to have a look at the website you mention, and am sure they will be happy to give you their opinion. As I said, they have already done some research in this area, and I believe they feel that it has some merit.

I understand you have some scans scheduled in the not too distant future. Keeping my fingers crossed for you; be sure to let us know how you fare.

Regards,

Karen

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Hi Karen,

If there's a flaw in the IV C strategy I haven't found it, so I would really appreciate another opinion. I love the science behind it. Apparently there's no dispute about the extreme catalase deficiency inside of cancer cells. That was the part that I was originally most concerned about.

My only remaining concern is implementing a treatment schedule that brings the blood up to the magic 400mg/dl level frequently enough and for sufficient time to kill ALL the cancer cells. The body excretes the ascorbate so rapidly that plasma levels are back to near baseline in 24 hours. After my 4th IV I had my levels checked after 50 grams and I was at 358mg/dl so I'm pretty confident I'm achieving the 400 now. However since I'm only doing the 50 gram IVs twice a week, I may only be actually over the 400 number for as little as say 2 to 4 hours per week. That may not be long enough to achieve complete eradication. It seems to me that the ideal solution would be a continuous drip at a low level to offset the excretion rate. But for now I'm following the published protocol.

My scans are next Monday but I'm concerned that they may be muddled by all the scar tissue I have, we'll see....

What I can say without reservation is that prior to starting the IV C I had difficulty walking 30 feet. I felt awful and was incapacitated by any standard. In March I was facing the real probablility of being hospitalized to be put on a ventilator. Of course that was a one way trip.

Within 2-3 weeks after starting the IV C I felt much, much better and now I am able to function again. I go up and down stairs without difficulty. So in my judgement, even if the treatment does NOT eradicate my cancer, it's still been a godsend for me. I love the idea that I have at least some chance to eradicate my disease. Nothing else offers me any hope of that.

For what it's worth when I spoke to the researchers their comment was that some practitioners who claim to be using the treatment are not using enough to get the full effect. They agreed that it's essential to measure the plasma saturation and adjust the dosage accordingly to achive the 400mg/dl for as long as possible and as often as possible.

If this isn't the "silver bullet" for cancer, I haven't yet discovered why.

I'll be anxiously awaiting another opinion. Thanks again,

Dave S

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Hello Dave,

Please let me start by explaining that Rachel and I are both retired and our "expertise" in alternative and complementary treatment is limited to information gathered over the past 6 months, is not based on expert knowledge, and any statements should not be taken as medical advice.

My personal gain from Rachel's illness is the discovery of how much more than surgery and chemotherapy is available, and useful, in the management of cancer. I very much regret not having come to this realisation at a time when it might have been useful to my patients, and really hope that the "integrative medicine" takes off and allows the coexistence and amalgamation of all useful therapies. We may need to ditch the term "alternative medicine" first, because it is a divisive one.

Prior to looking at the RECNAC website my main reference to Vitamin C was Dr Abraham Hoffer and you will find a lot of hits in Google under "Abraham Hoffer and Vitamin C and Cancer". It certainly seems to have some value, but as you have discovered, we need to find a form which is not as readily excreted by the body and is still safe to use from the point of view of overdosage. This problem seems to place some limits on the value of this as a mainstay treatment, but if it is making an obvious difference to your wellbeing why abandon it?

Theoretically I was impressed by the alkalinisation idea as in Caesium and Ionised Water. How bad was your problem with Caesium? Oxygen therapy was another treatment which appeals for having an effect without apparent side effects. And as you know there are many more, we are giving Rife a go as well. There is no need to limit yourself to any one method.

Tetrathiomolybdate is someting which has an effect on angiogenesis and may counteract the pulmonary fibrosis associated with Iressa - I have no idea if it has been trialled in this way as yet.

Please do not take my statements as medical advice. They are comments made on topics which are quite new to me and I will continue trying to lessen my ignorance for a long time yet.

Best wishes,

Karel.

Thought I should add my two cents worth as the patient! I would certainly endorse what Karel says about our lack of expertise on so-called alternative therapy. Despite medical training, I found myself in exactly the same position as all other Stage 4s and doing the same running around looking for answers. One thing which becomes very obvious, to misquote George Orwell, is that some Stage4s are more equal than others, and this of course translates to the varied reactions we have to treatments; for example, I'm about to start my fifth cycle of Cisplat and Gemcitabine, and have had fairly mild side effects, also Caesium didn't bother me except for mild nausea. I take vitamins, minerals and enzymes on the advice of nutritionists and others who have spent much longer than myself researching the topics, and I keep my oncologist informed on what I'm doing; I've also changed my diet to get rid of sugar, as little salt as possible{preferably potassium chloride }, as little fat as possible, and protein from vegetable or white meat and fish sources. So far the situation remains stable, but we continue to look for anything useful and apparently sensible. Many people in our situation do manage to beat the odds, and a forum like this is excellent for exchanging information and hope, providing we all remember that even if we become experts in our personal situation, we still must rely on the objective advice from the specialists in their own fields.

All the very best, Rachel.

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Dear Karel and Rachel,

Thanks for the reply. First regarding the IV C:

There's a lot of info around but you have to dig for it. Starting with Linus Pauling and Ewan Cameron who had substantial success with it. You've looked at the Hoffer work and now the RECNAC project. THere are many proponents for IV C.

I think that rather than try to find a form which is not as readily excreted from the body we would be better off to simply compensate for the rapid excretion with more C. I have not determined that there is any identified threshold of maximum dosage for the IV C. I've seen reports of up to 125 grams being infused with no ill effects. I'm currently on 50 grams twice per week. I expect if necessary I could probably safely increase to 75 and then 100 grams perhaps 3 times per week.

There are also other techniques could be used. The RECNAC folks also tested a large bolus of C followed by smaller continuous drip of say 30 to 50 grams. The advantage here is to maintain plasma ascorbate levels above the cytotoxic threshold for as long as is desired. The problem for someone like me with that approach is that I don't have sufficient access to the testing facilities required to monitor my plasma saturations in real time.

The other benefits of the C are not insignificant. The increased collagen production induced by the C gives a lot of protection against further metastasis. I guess at this point I am commited to IV C unless and until such time as I'm forced to abandon it.

You asked about my experience with Cesium. I was only on the Cesium for about 3 weeks. My timing was poor. I was in the middle of a raging progression of my disease and developed severe breathing problems. Tumors were compressing the bronchi to all 3 lobes of my right lung and they were all but totally blocked. I had a bronchoscopy to explore the option of stenting the bronchi but they were already to occluded. At that point I was desperate. My medical and radiation oncologists would only treat me on the condition that I stop the cesium and so I had to agree. So in all fairness I didn't get to give the cesium a fair test. However I must admit I was very sick at that time and I can't say that the cesium wasn't part of the cause for my extreme condition. I simply don't know. One thing I didn't like about the cesium is that it's half life in the body is about 3 months. Another thing which troubled me was I felt that the pH of the interior of cancer cells was speculation and had not been adequately proven.

I am much more enthusiastic about IV C than I am about cesium. I would encourage you to give serious consideration to IV C. As I said before it makes perfect sense to me. If you are now or become in the future, aware of flaws in the protocol please let me know.

Regarding chemotherapy and radiation, I have had a lot. I am aware that organ damage results from most of the traditional protocols in common use. I know that I have permanent neurological damage and I will always be at increased risk for future cancers due to the treatments I have already had. For these reasons I will be reluctant to consider more radiation and chemo for myself.

Please let me know if you have further thoughts you are willing to share. If you have any questions I may be able to answer please let me know that also.

Best wishes to us all,

Dave S

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Dave,

Have you ever heard of glyconutritonal supplements? Plant sugars? Scientists have discovered that are cells have these attached to them. They believe that if we have enough of these nutrients in our system that we can heal ourselves. The product is called Mannatech and it is becoming well known. .

My husband has been doing good since taking large doses of these plant sugars, (saccarides) pantent pending as "Ambrotose"

If you want more information here is an article:

Five years ago, Jim Holton received a death sentence. The Coon Rapids man who once offered hope and hilarity, laughter and light-hearted moments to the sick and dying, visiting patients as the clown character, Dr. P.P. Potts, was sick.

After suffering months of fatigue, unexplained aches and pains and enduring a battery of tests, Holton was diagnosed with cancer.

Treatment was recommended, medications were prescribed, a prognosis was forecast and surgical procedures were scheduled.

The future, as described by specialists and oncologists on Holton’s case, was black as night. And death seemed as near as the setting sun.

Then a friend introduced Holton to Mannatech, a research and development firm studying glycobiology.

Holton began taking the suggested Mannatech glyconutrients and within weeks doctors were dumfounded when tests and procedures failed to perceive a single cell of cancerous tissue.

Holton was declared cancer-free and today, he is racing toward a glistening future full of life and bursting with energy that defies his 81 years.

Equipped with his own life-saving testimony, Holton and his wife Bernice became Mannatech associates, sharing his story with others and promoting the use of the glyconutrients to loved ones, friends, neighbors, colleagues and acquaintances.

Last month, the Holtons traveled to Dallas, Texas, where they attended the 10th annual Mannatech International convention.

There they were recognized for having achieved national directorship, a designation describing the depth and breadth of the Holtons’ testimony and the resulting lives changed and renewed.

According to Holton, four recent Nobel prizes have been awarded in the field of glycobiology, and Mannatech has patents or patents-pending in more than 100 countries.

“Mannatech is already contributing to the health and wellness of thousands of people in Australia, New Zealand, Japan, Great Britain, Canada, and the U.S. and is currently preparing to expand operations to Korea,” Holton said.

Holton describes Mannatech as being “on the cutting edge of glycobiology,” he said.

Mannatech has been recognized for outstanding achievements in educating the public on the use of glyconutrients to achieve optimum health and wellness, Holton said.

Mannatech’s Web site, glycoscience.com, has been awarded the silver medal (second only to the Mayo Clinic Web site) for “outstanding world class reporting of scientific studies showing the result of glyconutrients on the health and well-being of thousands of patients.”

“Mannatech makes it clear that its products are not used to diagnose, treat or heal disease,” Holton said.

Anyone who is interested, I will get you in touch with them! :D

Tess

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Hello Tess, I have had just a cursory look at the site. I see a couple of problems. 1) it is a highly commercial company centered on money. This in itself does not bother me, but their reliance on anecdotes in the form of "warm and fuzzy" stories does. Seems like Pyramid selling in principle. 2) Current wisdom is that cancer cells thrive on glucose. To start feeding the body large quantities of sugars which are readily converted to glucose does not sound sensible to me without getting a logical explanation of their reasoning, other than financial independence through selling the product. I may be quite wrong in my cynicism, but please be cautious.

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Guest bean_si (Not Active)

I really don't know if I'm doing the right thing in posting this. I don't want to rain on anyone's parade but I don't want people misled either. From all I've read, mannotech is a multi-level marketing company (or pyramid) and has come under fire for falsifying a study showing it's effectiveness.

Is mannotech effective in fighting cancer? Heck, I don't know. I just thought people should see the other side of the story. And to be honest, I'm having trouble with the sugar idea. I have always been under the impression that ALL sugars are processed the same way in the end stage. (Don't be mad at me anyone, okay? It's been a really hard week so far.)

http://www.mlmwatch.org/04C/Mannatech/evans5.html

http://www.mlmwatch.org/04C/Mannatech/evans.html

http://www.mlmsurvivor.com/mannatech.htm

Cat

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bean_si, the links you give rather confirm my impression of Mannatech as a pyramid sales outfit with little to support their expensive product. I have seen the articles which suggest that it is usefull in ADHD, polymyalgia and various other common disorders for which there are at present no good proven orthodox remedies.

Also like you, my memory (hazy some days) tells me that the body does its best to break down any carbohydrate to glucose as the end product. Snake oil had its salesmen too, as well as buyers.

Best wishes to all, Karel.

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bean_si,

Thanks for the info. I'm always disappointed when I find opportunists who try to prey on our desperation. We should start a thread on how we separate the legitimate from the illigitmate "cures". You know basic screening like, does the author stand to make money if the reader "buys" into the therapy, etc. I'll give it some thought....

Best wishes to us all, Dave S

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