Anyone else out there choosing 100% Alternative?
Comments
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Thanks brnx - very well said.0 -
rozem
I am SO interested in the answer to your post, I wonder if you would consider using it as an Opening Post and starting another thread so it can be given full attention.
I too am very interested in this, as an addition to conventional treatment, in my case. Thanks.0 -
Abigail,
I apologize to Native Americans if my comments demeaned any of their cultural beliefs. I was truly unaware of that. As to your comment about orgone, that was a theory proposed in the early 1930's, having nothing to do with native people's or Mr. Reich's ethno/cultural heritage.
Jojo,
As to our "vain" thread, please note that it is in the humor and games forum. Vain we may be but we can we can laugh at ourselves at the same time!0 -
Sigh, my husband is bald and has no cosmic energy and has deficiencies in his frontal lobes, and so forth. However, he no longer needs haircuts. Maybe the cells on his scalp serve as antennae! His head does get hot in the sun!0 -
Question: Do natural hair wigs possess orgon energy? Inquiring minds want to know.0 -
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Oh the fun continues. I see what you mean and your reasoning for protecting the boards. Do we know that Abigal doesn't have cancer? Does any of us know for sure that anyone else here doesn't has cancer? To me the diagnosis from a doctor does not give you cancer. Cancer gives you cancer. Abigal posted something that sounded to me, from her description, her breast is likely cancerous. According to what she has written, she is, at her mature ripe age, choosing to be exclusively alternative, which is what this thread is about. She is trying to convey her journey the best that she can on this site. That's how I see it. I respect that. I also respect that she is sick too, and I respect that she is my elder.
Rozem and Sunflower, I have seen many peer reviewed scientific studies on various alternative cancer protocols, some of which are very compelling, many have already been posted on these boards. The downfall is that many of the studies stop short of being fully convincing. Though they might be peer reviewed or have control grps, they may lack human subjects. Sometimes they even lack mice or rats, and only provide the evidence based on cells in a petri dish. That makes it very unconvincing for many who want full proof, and a guarantee of safety. Still there are anecdotal stories of people who have survived cancer. It's a risk to decide to believe them, or try it out on another body w/ another cancer, but everything is a risk w/ cancer.
I search for the same proof when I study the efficacy of different chemos. I look for anecdotal stories as some resemblance of proof that they work. I may need chemo at some point and if I'm going to choose one then I want to be sure to choose one that has a history of working. The thing for me is that we know for certain that chemo is dangerous and wipes out the immune system, makes us prone to infection, and because of this, the impact of chemo can greatly reduce chances of survival as well. So, it may give time, or it may take time, flip a coin. I am still am looking for proof that any of them work to make us healthier than we would be without it or make us live longer than we would without it (except for herceptin). If my cancer returns and it's receptors change to HER2+, I will not hesitate to take Herceptin based on what i have learned about it.
Whatever the choice, it is the cancer that takes lives. For me, I want to do my best to keep the quality of the life I have left, however long. From my understanding chemo takes quality away, and does not seem to increase the life span.
Each person has the right AND a choice to decide what might buy them more time. Informed decisions are required. Exbrnx, I agree that sometimes we need to share the information we know to help others who may not have it. But simply saying it does not make it so. Yes people who did Gerson, often died anyway, but can we say with certainty that carotinoids, flavanols, salvastrols, antioxidants, saponins, etc., from vegetables have never helped anyone w/ cancer? Can we say that coffee enemas never helped to salvage someone's liver? help them to live longer? Personally, I think Gerson's rigitity thwarts the healthy effects. I have informed myself enough to be convinced that without protein, people w/ cancer will suffer severe health effects and die sooner. Can i find some convincing information to share to a "desperate" person? or is it enough to belittle the person by belittling their intelligence, their choices, steer them in the opposite direction of what feels intuitively right to them, ultimately encouraging them to feel weaker and more afraid? without any proof to back up your own views? then several gang up to do the same thing? I like this forum for sharing research, what might be effective, the evidence for and against it. With the constant polarization and this ongoing unproductive feud, how can we do that?
The way I look at it is everything I think I know, I have to question and seek more information. When I find information that backs up an alternative approach, at stage III, I look for more. If I find more, I try it. I share it. Though some of you may say you are open to alternative methods, and that is why you come to the alternative forum, I don't typically see that openess, I only see advocation of conventional methods, and trying to convince others to do the same, when that is not what they are here for. I am not negating any possible effectiveness of all conventional approaches. But how much effectiveness can be promised there? If we know one method doesn't offer a great deal of hope, then I think it makes sense to be open to others. Desperate? who isn't? I don't know why people considering alternatives are considered to be "desperate",by people using other methods.0 -
You are right, the dx from my doctor did not give me cancer. The dx just confirmed, that I have it! This confirmation is the pivotal point and allows me to state, unequivocally, that I have bc and allows me to speak via personal experience and the guidance of trained professionals (conventional) about bc and it's tx as I have experienced them. For me , it is not so much Abigail's self tx, though most of it is dubious, but the self dx that that makes her position a slap in the face to those who know they have bc. From her description, her breast is most likely cancerous? Ah, if only diagnosis were a matter of description. I cough therefore I have TB? Sorry, not the way it works. As for desperate, I for one am not in the least bit desperate. I believe I said that occasionally, people who are desperate and totally in fear of conventional medicine post. A recent one that comes to mind is someone who read about white kerosene and proposed to start imbibing a bit daily. Though there is a component in kerosene that does have medicinal value (available in Canada I believe), this is not what she was asking about. Seriously, all I am looking for is evidence, plain and simple. Not anecdotes, old wives tales nor the folk remedies that allowed my ancestors to live to the ripe old age of 45. I want to believe that there is something that will free us from this scourge while doing no harm. Yet no one presents the proof but instead keeps bringing up anecdotes and hearsay. At least with evidence based medicine, the stats and research are there, dismal as some of it is.0 -
awhile back someone asked about DMSO, wishing it was available in the U>S> I looked it up when an acuaintance said you havn't heard of DMSO? It can cure cancer. It is available on line, or was, it can indeed shrink tumors, & also shrink the brain. If I'm going to get out of here without seeing doctors, I need my brain the size it is, at least. It's an industrial solvent use in wood processing as I recall0 -
Abigail, for the sake of clarity, this DMSO is a solvent primarily, and here is what Wiki says about other claims made for the stuff:
"DMSO is marketed as an alternative medicine via books with titles such as DMSO: Nature's healer. Its popularity as an alternative cure is stated to stem from a 60 Minutesdocumentary featuring an early proponent.[4] It is listed by the U.S. FDA as a fake cancer cure[3] and the FDA has had a "running battle" with distributors.[4] This has included Mildred Miller who promoted DMSO for a variety of disorders including arthritis, mental illness, emphysema, and cancer and wrote a book touting DMSO entitled A Little Dab Will Do Ya! (Quality Advertising, 1981). It is still listed as an ineffective alternative cancer cure by the American Cancer Society;[22] for most conditions there is insufficient evidence to state any effect[23] and most sources agree that its history of side effects when tested indicates caution when using it as a dietary supplement, for which it is heavily marketed with the usual disclaimer."0 -
I am losing the plot now......but the question about research is a good one as the main issue is that alternative approaches work differently to conventional ones so there are no clinical trials but there ARE experiential reports going back 15 years on some protocols..... on rthat subject though I understand there is no official clinical trail on chemo either as you cannot have a control group so that is as proven as alternative approaches.................0 -
On the issue of hair does the fact that pubic hair retreats and slows as we age prove the theory about energy? Maybe the fact I am less bushy accounts for the lower level of activity there..................0 -
lily,
What do you mean that you can 't have a control group with chemo? I almost participated in a clinical trial to test the efficacy of Herceptin on women who are HER2 low. One arm is getting Herceptin, the other is not. I don't think you can ethically withhold treatment if there appears to be overwhelming evidence that a drug works, nor can you continue if the drug in question is doing harm. However, during the clinical trial phase you can have an arm that is not receiving the drug.0 -
There was a trial with Herceptin they had to stop because the results were so outstanding. They then gave it to everyone who had been in the trial.
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Lily, I like your pubic hair theory
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As to the testing of alternatives, of course they can be tested. They do not really work any differently from any other drug - assuming they work at all. Further to Kay's point above about the phase III trial that did not bear out the hypothesis formulated during the petri, mouse, phase I and II trials, the main reason many of the miracle cures circulating on the internet have never been tested properly is not that nobody wanted to because of big pharma conspiracies. It is usually because the initial phases of testing were done and failed to show any promise warranting further testing.
In fact, I just saw an article, posted here on BCO in several threads, on a test of various supplements given together. It was news because apparently the supplements did not do much individually, but seemed to pack a punch when given together.
I also saw, again here on BCO, a new study suggesting that nerve blocks during mastectomy may improve survival, which is a very interesting finding, even if it has nothing to do with herbs.0 -
A clinical trial is just to prove or, in some cases, disprove a hypothesis. A team of scientists tries to prove that [name substance here] has a statistically significant benefit over another substance or over nothing at all. It doesn't mean that the hypothesis will play out as expected. Many, many times "links" are documented, but nothing conclusive ever really develops, even with repeated testing.
And there is absolutely no reason why natural substances cannot be put through the same research process as conventional drugs; some even have been. St. John's Wort is a good example; it's a proven natural source of hypericum that is quite effective at controlling certain types of depression. In fact, if St. John's Wort proves not to be strong enough to control an individual's depression and they are prescribed a stronger, conventional medicine, the individual is warned to stop taking the St. John's Wort, because taking both can result in a life-threatening overdose.
A substance is not considered "proven" until it has gone through several clinical trials that all return the same results. One study - even five studies - is not enough because, not only does the substance have to be tested again- and again for safety and efficacy, but the research module has to be tested, as well. If a questionable- or faulty model was used, then the results are considered "skewed". If the conclusions drawn by the research team are not based entirely on the results and are, instead, influenced by their personal beliefs, then the results are considered "skewed". That's why it takes so long for a new drug to move it's way through the research and development phase: it has to go through several complex levels involving repeated testing, repeated scrunitizing of the clinical model, repeated scrutinizing for biased conclusion, repeated "re-do's" to ensure that the results are not just a fluke, and repeated assessment by clinical research peers and government regulatory bodies.
My knowledge and respect for natural substances - I have one- or two growing in my backyard with the potential to kill if not properly used and handled - makes me one of those people supporting the demand to have naturals put to the same tests as conventional drugs, and to have naturals regulated like conventional drugs. There are too many companies out there, packing gawd-knows-what into little capsules and selling them as something they are not. This has to stop. It's dangerous, it's irresponsible and it's downright unethical. Naturals can work - I know this. Let's make sure they work safely.
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Duh, I didn't realize that hypericum and St. John's were the same thing. In Denmark we call it perikon, and we make it into snaps. We also used to burn in on St. John's day, midsummer, to drive away demons.0 -
St. John's Wort is a great natural anti-depressant. But I understand it also cannot be taken with Als.0 -
Yorkie, after rads I was given some St. Johns oil (olive oil with plant extract) by a Greek nun. It was meant as a salve to heal the burns. I looked it up, and apparently it has some sort of estrogen action going on, so I skipped it. That may explain why it is not a great idea if you are on an AI.0 -
That could be Momine. Never heard of it in an oil form.0 -
you'd like for instance garlic regulated ms wolf?0 -
Yes, I would... if it means that, everytime I go to buy a garlic supplement, I can be assured - no matter what brand I'm buying - that what I am receiving is EXACTLY what's on the label... pure garlic bulb extract with no "surprise" ingredients like rice- or milk powder in it, or a parabens-lined capsule.
What I think most of the natural girls are misunderstanding is that people like me are not advocating for things like broccholi or kale to be registered and trade-marked; that would be totally ridiculous. What we want to see is that - if you are going to manufacture a natural supplement and market it - there damned well better be the ingredients in it that you say are in it. If I'm buying an echinacea supplement, I want to ensure that the echinacea I'm buying has been manufactured from an echinacea root that is, at least, three years old (anything less is not as effective) and does not contain the leaves and flowers instead (which, although pretty and taste good have no medicinal purpose whatsoever). I want to be sure that there are no additives added to it - I want the pure deal - and I want it in a form that doesn't add any additional ingredients, such as harmful dyes, colorants or preservatives or, even, inert ones. I don't want to play guessing games. I want the real deal and I don't think that that is too much to ask.
Until natural supplements are regulated, then I will continue to grow- and use my own because, at least, I know what I put into things. And I will continue to question the claims of marketed natural substances and the wild claims some of the manufacturers make until some sort of regulation is in place.
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I agree there should be more regulation of supplements promoted for disease prevention or treatment, and foods promoted for the same thing. Over the last twenty years I know there have been several attempts at federal legislation to include supplements under FDA regulation, but they seem to have been beaten back by the supplement industry. There's big money there, as well as with big pharma, and I know they have enough support in Congress (Sen. Orrin Hatch comes to mind) to have gotten their way, so far. I don't think supplement manufacturers are motivated to do clinical studies because they can't get patents on a lot of their products, so that's part of the reason there isn't the level of research you find with drugs. Universities seem to be doing some good and promising research on various supplements using cancer cells and mice or rats, but I don't see much of it moving into human clinical trials. I do think part of the problem is lack of funding at that level.
I think there is some naivete among those of us who prefer supplements to drugs. The view is that if it is natural, it is better, but that is not always true. A lot of times benefits are dose dependent, so in moderate quantities a substance will have a suppressive effect on cancer cells, but if you take too much it could have a proliferative effect. I ran across two studies on mice, one involving astaxanthin and the other, broccoli sprout extract, that showed just that. That's where we really need standardization of what is in supplements, so we know exactly how potent the supplements we are putting in our bodies are.0 -
Fallleaves, good points all.0 -
Fallleaves... exactly! Natural substances can be dangerous. Digitoxin (foxglove) comes to mind; a stunningly beautiful plant with the ability to regulate heartbeat. Digitoxin in the botanical base for many conventional heart medications. But digitoxin, when taken in the incorrect amount, will not strengthen your heartbeat, but weaken it. It can kill when used improperly. The same is true with lilies-of-the-valley; also regulates the heartbeat, but can be horrifically toxic when misued.
Another good example is comfrey root. It is unsafe to take it by mouth: the chemicals in it can cause liver- and lung damage, and cancer. But as a topical cream used in small amounts, it can help heal. And pregnant- or lactating women should NEVER, EVER take comfrey as it can cause birth defects. But the FDA has been, so far, unsuccessful in having oral comfrey preparations taken off the market. Hopefully, they are still working on it.
And all naturals, all conventional medicines have limits. There is no one miracle drug out there. Echinacea, organic honey, garlic and thyme tincture can help alleviate cold symptoms, but are absolutely useless when it comes to influenza. Something stronger is needed, perhaps an antibiotic or anti-viral.. And if influenza develops into pneumonia, you'd better get your ass to a hospital or you could, possibly, die without the proper care.
Natural supplements have their place. But a boneset poultice will NOT reset a broken leg.
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Momine, your opposition to alternative treatments for breast cancer has been clearly voiced on this thread. The mods say that this is not a place to voice opposition. Its supposed to be a "safe and non-judemental" place for those who use alternatives for breast cancer.
Exbrxgl, I get that you are offended by Abigal posting because she hasn't been diagnosed, but that is her choice. I just don't understand why something that she chose for herself offends you so much. I would like to understand though.
Yorkie and Mardibra, you have expressed your opposition of alternative methods for breast cancer and made yourself clear you are not interested in using them. So, according to the mods, this forum is not for you.
By the way, Momine, in the spirit of giving unsolicited advice, just so you know DMSO has been shown to have uses in cancer treatment. If you are going to show that you have some kind of interest in alternative treatments, then maybe educate yourself properly by spending a little more time, like several hours (a day), and not just stopping w/ wiki.
Memorial Sloan Kettering has listed many substances, with references pertaining to herbs and alternative substances, including DMSO that have shown with research to have an effect on cancer cells, cause apoptosis, have anti-cancer, and anti-tumor effects. Everyone here is responsible for doing your own research. If you going to share your knowledge about them, please spend some time researching them first.
Done with advice giving, not my style at all, made me uncomfortable actually, but I guess you can just consider it a taste of your own medicine, no pun intended.
People are already smart enough to know that herbs and other substances aren't regulated and they have not been tested to ensure their safety, and can be hazardous in certain quantities. That is common sense. It is still each person's choice to use them or not use them.
It takes a certain kind of person to use alternatives. "Desperate" is not the first thing that comes to mind, unless desperate means that we want to stay alive for awhile and be healthy. With the dismal trajectory and motivation behind conventional medicine, the hope is bleak. To quote another, "a person's life should not be at the mercy of the whims of corporate medicine" Our lives are much too precious and we are much too sensitive to be subjected to the false hope that chemo will help, only to find that it doesn't, and makes cancer progress more rapidly instead. Knowing this, seeing it time and time again, why wouldn't people want to look outside of that choice?
Researchers driven in different directions, have stepped outside of the box and have given glimmers of hope in cancer treatment in the last several years. Now cancer vaccines and alternative treatments have made it into clinical trials. That is an awesome first step to bridging the gap between corporate and alternative medicine. But are we now supposed to just wait for all those trials to get done before we work on trying to get ourselves healthier?
I got diagnosed with cancer. I want to do what I can to make myself healthier every day. A person who uses alternatives to get healthier to build their immune system, to fight breast cancer, I believe is using some logical sense, by recognizing they need to seek outside of western medicine, because clearly they are not going to be saved by it.
Alternative treatment's are clearly not for everyone. But I think it is courageous, and intelligent, to try. I believe we are taking charge of our own health and our lives the way medicine today can not do. Researching and choosing for ourselves and deciding on our own what makes our bodies and minds stronger is a right we all have. It is life giving, and hope giving, today, to simply to have that choice, because for me, I keep thinking, what's the alternative? chemo? where's the hope in that? I know, for myself, when and if I choose chemo, it will be when I have truly given up hope.
I believe that several substances could possibly help- to name a few, goji artemisinin, iodine, curcumin, DIM, grapeseed extract and medicinal mushrooms. Am I an expert? Nope. But I know how to read. and I take up a whole lot of time doing it, and I could share my own experience, in a safe non-judgemental atmosphere, if I had one.
I have had several people PM me recently, all fed up by the people voicing their opposition, bashing others trying alternatives. They don't feel safe to post here, and are pretty much done w/ trying to converse on these forums due to the constant imposition, opposition and judgement of those few that refuse to educate themselves enough to realize and respect the potential uses of alternative treatments.
I can accept that they are substances that will never be given by a doctor and aren't regulated and take them anyway. Until a natural substance that has cancer fighting potential can be remanufactured into a patentable form, it cannot be owned, and therefore cannot be regulated and profited off of. Greed is wasting precious time that some of us simply don't have.
Momine, you brnx, nor yorkie, or mardibra, have any interest in using alternatives for breast cancer. You have voiced your opposition, you have not been willing to respect others who use them. I respect each of you, but I have to say, it does make me me sad that you 4 people, are openly and repeatedly violating the policies and the intended purposes of this forum, and have jointly created an unsafe atmosphere here.0 -
Lightandwind... that is a bit harsh. None of the ladies posting here have created an "unsafe atmosphere". Far from it, they have opened the floor to questions and debate, which can only be a good thing. That said, I do understand the concerns frequently voiced by Momine, exbrxgrl, yorkie, and mardibra that much of what happens here on the alternative thread by the alternative posters is not questioning, debating or sharing sources, but dangerously close to (and sometimes crossing the line of) self-diagnosis, diagnosing others, prescribing for others, and actively discouraging others from any kind of treatment unless is so-called "natural". Some Alternative posters even advocate the use of potentially unsafe substances, i.e., collodiol silver.
We - and I include myself in the above group - also deplore the tendency to fear-monger on the alternative boards (i.e, "chemotherapy will kill you, radiation with leave you with permanent heart damage", etc.). I've seen those posts myself where someone actively discourages someone who is on the fence about their course of treatment and, perhaps, steers them in to dangerous and unchartered waters. I find this upsetting and frightening, and downright irresponsible.
I am someone who welcomes balance and I respect more than anyone, the potential of the Earth to provide everything we need, but that balance does not seem welcome in the Alternative Forums. It's "our way or the highway", no questioning allowed and, certainly, no dissenting opinions or cautions can be posted here without encountering anger, disgust, ridicule and downright viciousness (on one very notable occasion). Questioning sources, questioning theories - this isn't disrespectful nor does it create an "unsafe" environment. It creates a questioning one. It fosters a thinktank environment.
I agree with you in that everyone needs to find their own path. Absolutely. I agree with you wholeheartedly that there isn't one single path that is right or wrong. But I strongly disagree with you that any of us, who have embraced both conventional medicine, as well as the potential of alternative mediciine have violated any policies about open and balanced discussion on this forum. Questioning information is not passing judgement. Requesting sources is not disrespectful. Disagreeing with an opinion is not bashing. And asking someone to go back and check their information or suggest additional research, or even posting a dissenting source, does not create an unsafe environment. It creates an atmostphere of learning and openness.
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I understand and agree with you on the need for balance. That is why all of the rest of the BCO boards are focused on mainstream treatment.
Why do you guys feel it is your place to come to the only alternative forum there is and decide what other people choose? If they ask for advice, then I can understand as there are a lot of opinions on what to do when given a breast cancer diagnosis. When someone is ready to hear the mixed bag of everyone's opinions then I trust they will ask for it.
The questioning, telling people to go back and review their research, the badgering about others beliefs and lifestyles, and alternative choices is simply not your place.
I understand you are growing some things in your yard. How about several of us gang up. What is it you are growing in your yard Selena? you use it for breast cancer? There hasn't been any clinical trials, so how do you know that it works? I wouldn't advise that you use it, it might kill you. Here's a wiki report that says you shouldn't use it. You should stop posting that you are growing things in your yard that you are using for breast cancer. People will get the wrong idea and start growing things in their yard. Maybe we should all start growing things in our yard, stop going to the doc, right you guys? then everyone gangs up.
How does all that feel to you? Polite? Do you feel safe to post about the plants growing in your yard and sharing your experiences about fighting cancer alternatively with us now?0 -
Right on Selena! I am very, very interested in alt medicine, but I'm looking for the evidence, not the anecdotes. No luck so far, but my optimistic nature allows hope to spring eternal. Blind faith in any type of medicine is not my thing. Yes, my tx is primarily conventional but I went into it with eyes wide open and a track record behind it. I also clearly knew that the track record was far from perfect and knew what all possible se's were. Not that it should matter, but I do use nutrition and supplements to complement my tx. Not enough research behind these things to make them by primary tx, and I'm not always sure they do anything at all, but they're doing no harm.
It stretches the bounds of my tolerance to say it's alright for people to just decide they have a disease and then post on a forum for those who actually have the disease (and have been diagnosed!). Sorry, but just "choosing" to have a disease doesn't cut it with me. I can't even imagine the amazing amount of chutzpah and arrogance it would take to just hop on a message board for, Alzheimer's , for instance and decide to join them based on self dx. Breast cancer is not like making up an imaginary friend or fantasizing about something outside your realm. Self dx is not a choice when it comes to serious diseases, it's just wrong on every level and trivializes the very real fight that bc patients are in.0
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