Is it possible to post negative Alt experience?

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digger
digger Member Posts: 590
edited June 2014 in Alternative Medicine

I'm really beginning to wonder if posting about one's negative response to Alternative therapy is even possible here on BCO.  If this forum is for those who want to discuss the use of Alternative therapy over standard therapy, then it seems to me that all posters here should be able to discuss the good and the bad responses. 

Just curious.  It seems that whenever someone wanders over here and heaven forbid has a negative ALT experience (it's life guys, there are always good and bad experiences with everything), the person is quickly branded as unwanted on this forum.  

The ALT forum is for everyone, not just those who happen to agree with you. 

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Comments

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Actually, I would think that someone's bad response to an alt treatment would be very relevant.  Chillipadi had a very bad experience with the Budwig protocol and has posted a few times about it.  I don't think her posts have been deleted.  I've never been impressed with the Budwig protocol myself or with Gerson, for that matter.  

    Digger, did you try an alt treatment that failed you? 

  • leggo
    leggo Member Posts: 3,293
    edited February 2012

    I want to hear the bad; counting on it actually. Now please don't take this personally, 'cos I have way to many people on ignore and half the time I'm just skimming posts so I don't know who said what, but it can only be accomplished if it's said without sarcasm, personal attacks and condecsension. The big-know-nothing-know-it-all posts don't sit well with me either. I think it applies to either side of a debate. I can't imagine there would be a reason for the forum if we didn't hear about what DIDN'T work. I don't want to waste my time on quackery so I make a point of looking for what doesn't work in certain situations. Peace to all.

  • digger
    digger Member Posts: 590
    edited February 2012

    Wow, I never thought someone would psychoanalyze me. I'm a past breast cancer patient who would like to prevent a recurrence or new primary. That's why I read this forum. If there's an ALT that can help me with that, I'd love to use it.



    I don't have a hidden agenda, I don't have multiple user names, I'm not a fake BC patient. I'm just another woman among many who has had BC and I'd like to have a lot more years with my sons and husband.



    Fanaticism about anything I do find disturbing as well as hidden agendas. I sure wish we could avoid that on BCO.

  • leggo
    leggo Member Posts: 3,293
    edited February 2012

    I said not to take it personally. I don't know why you would think I had you in mind when I answered your post. I obviously don't have you on ignore.  

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    You should look up low-dose neltrexone.  Also, off label use of metformin is very effective.  Injections of iscador mistletoe are common in Germany and Dr. Block from the Block Institute recommends them as well, so you might look into that.  The studies on qi gong and cancer are extremely promising.  Of course, most alt practitioners recommend cutting out meat, dairy, and sugar, although there are some that recommend the blood type diet.  (The more I read about the Blood Type diet, the more I think there might be something to that.)  I'm also impressed by AveUltra, a fermented wheat germ extract.  

    I don't have much use for the FOCC, Budwig, Gerson, or coffee enemas.  I'm more interested in therapies that can actually be incorporated into your daily life.  Anything that can't (like 4 coffee enemas a day) is something that people won't be able to do and the treatment will fail.  Some people love the FOCC, but I just can't make any sense of it.  However, I'm sure it's fine as a dietary addition. 

    I missed the part where someone accused you of those things?  

  • digger
    digger Member Posts: 590
    edited February 2012

    Gracie,

    I wasn't referring to you but the comment about whether ALT treatment had failed me. I'm really sorry you misinterpreted me, I was just trying to say that seriously, I have no hidden agenda. I am who I am. I'm not going to be starting a post with inflammatory statements or crude language as in some of these other original posts. I'm simply here to learn about ALT, the good and the bad. Nothing more, nothing less. Just curious of that's possible on here.

  • leggo
    leggo Member Posts: 3,293
    edited February 2012

    Thanks for clearing that up digger. I want what you want and wonder the same thing. Here's to both of us getting more time with our husbands and sons.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Oh, sorry, I thought you said in your original post that you had a negative experience with an alt treatment, so I was curious as to which one.  I wasn't accusing you of having a hidden agenda or having two identities or anything.  I didn't know you were interested in alt treatments until now.  Which ones do you like?   There are lots of good ones out there.

  • digger
    digger Member Posts: 590
    edited February 2012

    Sweetbean,

    I'm sorry, but as I said, I really have no hidden agenda.  Why on earth would I be on the Alt forum if I didn't have an interest in Alt treatments?  I'm terribly sorry if you got that impression.

    Just as an aside, if you'll look at the other thread that was active today, you'll see exactly why I don't post any personal information on here.  You've got people with multiple user names and hidden, and not so hidden, agendas.  I am just who I am, nothing more, never pretended otherwise.  This is the Internet, folks, be careful of any personal information and people who might use it in strange ways!

  • heatherckc
    heatherckc Member Posts: 9
    edited February 2012

    I want to know the good and the bad. I have chosen the natural approach from the very beginning...

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    So digger, which alt treatments are you using?  Heatherckc, what are you doing? Always interested in adding to the arsenal...

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited February 2012

    Heather - if you really want to know the bad, do a search for Chillipaddi as a member's name and read her posts - what happened to her is very scary.

    There is a complementary forum here where women who did opt for traditional treatment but use supplememnts etc

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    How are Chillipaddi's posts a cautionary tale about alternative treatment? 

    She apparently has IBC, and has done a number of rounds of various chemo combinations.  That sounds a whole lot like conventional or maybe complimentary treatment to me.

    Why does someone who received a second diagnosis before even finishing adjuvant Herceptin treatment try so hard to push others to do the same treatment she did, and dissuade them from choosing alternatives?

    Digger, did you have a negative experience with alternative treatment?  If so, please share.  We learn from each other, and learning about pitfalls, and what to avoid are every bit as important as discovering possible new things that might work.

  • apple
    apple Member Posts: 7,799
    edited February 2012

    i hoped to be only alternative.. waited, waited, waited, jumped on trampolines, ate turmeric, nuts, took supplements, stocked up on fruits and veggies, avoided milks and meats  and of course trusted that my good behavior, excellent diet and history of exercise would keep the cancer diagnosis off the horizon.  i knew that lump was there tho.. big dummyhead is now stage 4  Cry

    I don't care for me so much, but feel quite badly for my absolutely wonderful  kiddos and mr. apple.

  • thenewme
    thenewme Member Posts: 1,611
    edited February 2012
  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Patmom,

    First, I'm sorry to bring up anyone's name.  I apologize for that.  Second though, she has been very open that she tried the Budwig protocol faithfully for over a year and it absolutely failed her.  I don't think she had IBC in the beginning - the tumor wound up breaking through the breast and becoming a very painful open wound that she is now trying to get under control with chemo so that she can have surgery.  I don't think she is a cautionary tale about all alt treatments, but she usually speaks very strongly when someone comes on here wondering about the Budwig.  Personally, I have been completely underwhelmed by the Budwig protocol.  And the OP's question was "can people post about having a negative experience with Alt treatments?"  So my answer was, "Yes, so-and-so has posted and has never been deleted."

    I know people who have successfully treated their cancer with alt treatments, but they all had surgery, every last one.   They also used multiple treatments, not just one treatment plus diet changes/supplements.   I think it takes a LOT of research and, quite frankly, a lot of money  - the best alt treatments get pretty pricey and time consuming.  

     Also, Patmom, who were you referring to with this question?  I'm a little confused...

     Why does someone who received a second diagnosis before even finishing adjuvant Herceptin treatment try so hard to push others to do the same treatment she did, and dissuade them from choosing alternatives? 

  • suzieq60
    suzieq60 Member Posts: 6,059
    edited February 2012

    Sweetbean - it's me she's talking to 

    Patmom - I referred to Chillipaddi because she went alternative first and ended up in a terrible situation as sweetbean says.

    Yes, I had a second diagnosis a year after the first while I was still on herceptin BUT that cancer was there the year before and missed and it was not HER2+ve - totally different pathology. SO it was NOT a new cancer. Yes, I will push anyone with an HER2+ve dx to not do alternative - most of us know what happened to wornoutmom.

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    So, keeping count, there was one person whose specific "alternative" protocol didn't work???

    And what exactly is the count over on the StageIV conventional thread?

    And: Please don't presume to insinuate anything about wornoutmom when you have no direct knowledge.

  • Ang7
    Ang7 Member Posts: 1,261
    edited February 2012

    Yikes.  Yet another thread heading towards destruction.

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Seriously.  Guys, I was just responding very literally to the OP's original question, not trying to create a list of people for whom alternative treatments failed.  If I was trying to create that list, it would be longer, to be honest.  But I could also come up with a list of people for whom alternative treatments (plus surgery) worked out.  

    Anyway, the OP wanted to know if people could post negative experiences about Alt treatments and I just responded with one example, trying to demonstrate that this Forum is interested in hearing all stories.  Nobody wants to waste money on quackery.  I was definitely not trying to pick a fight. 

  • Anonymous
    Anonymous Member Posts: 1,376
    edited February 2012

    If conventional treatments worked 100% of the time, then holding alternative treatments to that same standard would be appropriate.  If any treatment were that effective, then we would be talking cure, and we wouldn't have nearly so many angels.  Unfortunately that is not the case.

    If someone has a difficult time on an alternative treatment, then she should be able to come here and vent, and get tips and pointers on ways to make the experience better the same way that women on the chemo threads can, without being criticized, being told horror stories, being forced to defend her choices, and being implored to switch treatments.

    For  many people, alternative works.  Would those same people have had a good outcome no matter what treatment course they chose?  Maybe.  But if by going alternative (or complimentary) they have a better quality of life, isn't that a good thing?

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Yes, absolutely.  I think people have been able to successfully post about bad experiences.  I also think people can successfully post negative opinions, as long as it falls under the category of "I've done a lot of research and here is what I think works and what doesn't,"  rather than a broadly negative opinion about alt treatments in general.  For instance, I've always been open about what alt treatments I'm doing, as well as the ones I don't believe have much merit.  I've never been deleted for expressing an opposite view of an Alt treatment.

    The thing is that cancer is literally different for everyone, so we just don't have a good handle on what is going to work.  I'm choosing the "kitchen-sink" approach as a result. 

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    As much as I believe in alternative therapies, and I do, I would never suggest that anyone do an alternative therapy as a substitute for surgical removal of a tumor if that is possible.  From what I've researched, it is always preferable to remove the area of suspicion and then concentrate on keeping the cancer from recurring or spreading.

    Combining alternative with conventional for some is the way to go.  I was prepared to do both my alternative along with radiation, but was then told I could not do both, so I opted out of rads.  I am still taking tamoxifen until I can find a suitable substitute.  I also take low dose Naltroxene, vitamin infusions, and a host of other supplements.  I follow a fairly strict anti cancer diet.  In other words, I am trying to do the best of everything to stay healthy.  We all know there are no guarantees, regardless of which way you go.  We all have to find our own comfort zone.

    I don't come on this site to see people bicker about what is the right way vs the wrong way, so it will be refreshing to share our ideas without a lot of controversy.  It's ok to agree to disagree...that's normal in life. 

  • heatherckc
    heatherckc Member Posts: 9
    edited February 2012

    Well said Kaara, That is what I am doing as well. I have done my research, I have poured over books, documentaries and case studies.. Only to find conflicting views of the perfect treatment. I just ended up creating my own...(as far as diet) I choose what I was most comfortable with.

     I do Very high doses of IV Vitamin C treatments... they are expensive, and i cant afford it.. But I have managed to keep them going for 3 weeks now... Ill do them as long as i can.

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    heatherckc:  Yes, the treatments are expensive, and not covered by insurance, at least not my Medicare, so it is out of pocket each time I go, and will end up costing me around $5,000 plus the cost of my supplements.  It means one less vacation we'll take, or those kitchen counters I was going to redo, but hey, it's my health I'm talking about.  I'm not willing to compromise that with treatments I don't have faith in, just because they are covered by my medical plan.

     My naturopath says about twenty IV's is the norm for a low grade low stage bc like mine.  In addition to the vitamin infusions (Meyer's cocktail) I get a boost of glutathione and lipoic acid at the end, plus there are some cancer additives added into the cocktail, so it's pretty potent stuff.  I'll be on the anti cancer diet for the rest of my life..it's the new normal for me...eating like a rabbit.  I allow myself one forbidden food once a week so I don't feel deprived.

  • orange1
    orange1 Member Posts: 930
    edited February 2012

    Hi kaara - 

    I've never heard of low dose naltrexone for cancer prevention.  I am curious about how it works.  I apprieciate any information you can provide.  Thanks. 

  • sweetbean
    sweetbean Member Posts: 1,931
    edited February 2012

    Orange,

    If you google low dose neltrexone, a lot of stuff comes up.  I have a naturopath friend whom I trust very much who recommended it (She is BC survivor who did surgery and alt treatments and is cancer-free 8 years running.)  Anyway, between that, the studies I read, and the fact that it is cheap with no side effects, I decided to do it.  

    For those wondering, my friend did vegan diet, juicing, mistletoe, acupuncture, LDN, supplements from Young Living, Avemar.  

  • Kaara
    Kaara Member Posts: 3,647
    edited February 2012

    sweetbean:  What dose are you taking of the LDN?  I'm on one cap daily which is 1.5 mg, but doc said I could work up to 3 daily.  I take them at night of course.

  • thenewme
    thenewme Member Posts: 1,611
    edited February 2012

    Hi Digger,

    I share your frustration. IMO, this is the only forum where anyone can make any kind of claims and state them as fact, and any evidence to the contrary (or even respectful questions) is blatantly unwelcome.

    It's the only forum where "discussion" is completely one-sided.  Anyone offering input or questions from a different perspective is quickly branded a troll and a bully "attacking."  

    It's the only forum where factually-incorrect information, unsubstantiated claims, and conspiracy theories abound.  It's an altered reality here where you can make up stuff and cherry-pick research and cite completely bogus sources, and when questioned, you can dodge the questions, cry "bully," change the subject, or any of the other common responses.  

    It's the only forum where it's pretty transparent that some posters come here for motives other than sharing legitimate breast cancer treatment information.  These include political/advocacy motivations, business prospecting, website marketing, and who-knows-what other kind of issues bring people here.  

    Of course I realize that I'm one of the "unwelcome ones" here on this forum, but I hold to the belief that misinformation is a terrible disservice to legitimate breast cancer patients, so I try to present a more evidence-based perspective.  I'm not out to tell anyone what they should or should not do as far as their own treatment choices, but when I see blatant misinformation, it bothers me.  I don't understand why some posters would feel so threatened by facts and discussion.  

    "Discussion" of alternative treatment should, IMO, include pros and cons, personal experiences, facts and opinions, and respectful disagreement and debate, just like every other forum on this board.

    In my opinion, this illustration of "red flags" pretty much sums up some of the things  we see on this forum and should be openly discussed.     

  • MariannaLaFrance
    MariannaLaFrance Member Posts: 777
    edited February 2012

    Has anyone here had a strange reaction to Astaxanthin?  I experienced waves of nausea and a big headache when I took this.  I wanted to continue, but have been worried that it was caused by the Astaxanthin.  I experienced something similar when I took MSM, which rendered me sick for virtually 2 days after I took it. 

    Wondering if any of you all have tried either of these with any success?  

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