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Nuther Question....
When I visit alternative treatment forums, people are secretive about things. It always says that if you want to know how they were cured, to email them. Then there are remarks about how it is illegal for them to say how they were cured. Is this just a way to scam people who are desperate, or is it harmful to forum sites if their users post ways they were cured? Something smells fishy.
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royjulius - Who do you know with myeloma?: My girlfriend of 10 years, Alma
- When were you/they diagnosed?: About 5 years ago
- Age at diagnosis: 57
Re: Nuther Question....
With a life-threatening disease, one does not have the luxury of time to dabble in the unknown of alternative treatments. Why would you put trust in substances untested by controlled clinical trial? Even though something may be touted as natural, it still may cause terrible to even deadly side effects.
Also, there are many "experts" posting stuff on the internet who have dubious credentials at best.
Also, there are many "experts" posting stuff on the internet who have dubious credentials at best.
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Denise H
Re: Nuther Question....
When the doctors say 'don't google stuff,' or 'don't go to the internet,' they are talking about what YOU are coming up against. These folks, who want you to e-mail them, or say that their cures are 'illegal,' or who are secretive....
There's a reason for that, and it is NEVER a good one. Those who are legitimately doing good work for cancer and other serious diseases do not keep their information SECRET!!!
Now, I'm an internet advocate. I love Google. I love researching stuff. If it hadn't been for the internet, I personally would have been in a world of ignorance, because my own doctor has a very 'eastern' view of medicine; you don't tell the patient what might bother them...and the doctor decides what will bother them.
I, on the other hand, cannot handle handing control over me to anybody else, especially someone who treats me like a child because my bone marrow is acting up. My BRAIN works just fine, thank you very much...but here's the thing: if your brain works, USE it. Don't fall for 'it's a secret" stuff...those people are probably the cruelist folks on the planet. They want to profit off of your pain. Snake oil salesmen.
You want good information about multiple myeloma? You don't have to pay for it. The information is out there, put on reputable sites by solid research centers, universities and medical centers. They won't charge you. They won't keep things a secret. This is a nasty disease we have...but there's hope; real hope. You do, however, have to know where to look for it....
And where not to.
There's a reason for that, and it is NEVER a good one. Those who are legitimately doing good work for cancer and other serious diseases do not keep their information SECRET!!!
Now, I'm an internet advocate. I love Google. I love researching stuff. If it hadn't been for the internet, I personally would have been in a world of ignorance, because my own doctor has a very 'eastern' view of medicine; you don't tell the patient what might bother them...and the doctor decides what will bother them.
I, on the other hand, cannot handle handing control over me to anybody else, especially someone who treats me like a child because my bone marrow is acting up. My BRAIN works just fine, thank you very much...but here's the thing: if your brain works, USE it. Don't fall for 'it's a secret" stuff...those people are probably the cruelist folks on the planet. They want to profit off of your pain. Snake oil salesmen.
You want good information about multiple myeloma? You don't have to pay for it. The information is out there, put on reputable sites by solid research centers, universities and medical centers. They won't charge you. They won't keep things a secret. This is a nasty disease we have...but there's hope; real hope. You do, however, have to know where to look for it....
And where not to.
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dianaiad - Who do you know with myeloma?: Me
- When were you/they diagnosed?: Officially...March 2013
- Age at diagnosis: 63
Re: Nuther Question....
Thank you Denise and Diana. This is how I have felt all along, I guess I just needed some validation.
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royjulius - Who do you know with myeloma?: My girlfriend of 10 years, Alma
- When were you/they diagnosed?: About 5 years ago
- Age at diagnosis: 57
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