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Author Topic: Miracle Cure or Snake Oil?????  (Read 7458 times)
Goofy
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« on: October 08, 2009, 07:10:06 AM »

Someone at my place of employment is trying to tell me she has a "miracle" cure for PKD.  Its some natural pill of some sort that is supposed to increase the DHEA levels in your blood which in turn will "cure" my kidney disease.

She is also trying to "sell" me some type of all natural drink made of all different kinds of berries to also help me.  Obviously I don't believe her.....although she said it "cured" her cancer......hummmmm....sure it did.....

I've never heard of DHEA.  I'm curious to know if anyone else had.  She said I should get it checked in my next blood test.  Does anyone know what DHEA is?
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paul.karen
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« Reply #1 on: October 08, 2009, 07:16:33 AM »

Ask her to see her medical chart of when she had cancer.??

I think she is trying to sell you false hope.  Which if true is just sad.
The berry drink she speaks of may be acari berry or something like that. It has been talked about here often if that indeed is what she is referring to.

With that said i WISH as do so many others it was that easy :-).
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Curiosity killed the cat
Satisfaction brought it back

Operation for PD placement 7-14-09
Training for cycler 7-28-09

Started home dialysis using Baxter homechoice
8-7-09
RichardMEL
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« Reply #2 on: October 08, 2009, 08:00:26 AM »

Goofy's not yet on Dialysis so this may be a little less relevant BUT I would be also concerned about nebulous prodicts where you don't really know what all the ingredients are... what are the levels of Sodium, or Potassium, Calcium etc? Those things could adversely affect someone in renal failure.

Some miracle drug that cures cancer can also 'cure" PKD?? Yeah, sure.... and I'm the Lurve Guru!!!!!! yeah baby!! *swings hips* !!!
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
peleroja
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« Reply #3 on: October 08, 2009, 08:27:01 AM »

What was that political saying a few years back?  If it walks like a duck, and quacks like a duck, guess what, it's a duck!  I think it had something to do with taxes.  Then there's always, "if it sounds too good to be true, it is."  Run.  Fast, very fast.
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rose1999
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« Reply #4 on: October 08, 2009, 08:40:28 AM »

Produced by the adrenal glands, DHEA (Dehydroepiandrosterone) is mildly androgenic. A precursor to other adrenal hormones, it diminishes with age and promotes longevity in animals. It is one of the best biochemical bio-markers of chronological age.
Or so it says onhttp://www.diagnose-me.com/cond/C11446.html
Can't see that it has anything to do with kidneys so to answer your question I'd say snake oil!
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silverhead
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« Reply #5 on: October 08, 2009, 08:41:59 AM »

You can believe than any product that actually works as they claim would be swept up by one of the drug giants and offered at a price that would scare the living hell out of you......
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nursewratchet
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« Reply #6 on: October 08, 2009, 09:53:43 AM »

Like Rose said, it's an adrenal hormone.  It supposedly has great benefits to the body, and does decline with age.  It is supposed to help with the side effects of Menopause, as it is a precurser to hormones.  There is a good article on the web about it.  I take it, because the menopause is KICKING MY BUTT, but I digresse... I don't know that it would have any benefits or detrement to the kidneys at all. 
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Vicki
kristina
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« Reply #7 on: October 08, 2009, 10:11:26 AM »

I think that if a person discovers a real cure
for cancer and/or kidney failure,
the whole world would know
about it the next minute.
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  He was completion and fulfillment in itself, like a meteor which follows its own path.
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KICKSTART
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« Reply #8 on: October 08, 2009, 12:49:17 PM »

Next time she mentions it , ask her why she isnt a millionaire and why we arent all cured !!!
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OH NO!!! I have Furniture Disease as well ! My chest has dropped into my drawers !
Stoday
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« Reply #9 on: October 08, 2009, 01:52:08 PM »

Mrs Stoday was talking on the phone to my Aunt Joyce a few months back. She mentioned I'd been to my GP to ask about a problem.

Now, without examining me (because Aunt Joyce lives on the other side of the UK) and without even speaking to me, Aunt Joyce had diagnosed my problem and was proposing what I should take for it.

My GP, even with years of training, couldn't do that! The whole thing was so preposterous that I couldn't stop laughing. Some people actually believe they know how to cure medical problems better than the professionals.
« Last Edit: October 08, 2009, 01:54:19 PM by Stoday » Logged

Diagnosed stage 3 CKD May 2003
AV fistula placed June 2009
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Heart Attacks June 2005; October 2010; July 2011
glitter
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« Reply #10 on: October 08, 2009, 02:35:44 PM »

You can believe than any product that actually works as they claim would be swept up by one of the drug giants and offered at a price that would scare the living hell out of you......

aint that the whole truth!!!
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Jack A Adams July 2, 1957--Feb. 28, 2009
I will miss him- FOREVER

caregiver to Jack (he was on dialysis)
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Hanify
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Hadija, Athol, Me and Molly at Havelock North 09

« Reply #11 on: October 08, 2009, 02:49:36 PM »

I get send cancer cures all the time by well meaning people.  I just thank them and say I'd read it with interest.  If they push it, I say I have to check it with my specialist.
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Diagnosed Nov 2007 with Multiple Myeloma.
By Jan 2008 was in end stage renal failure and on haemodialysis.
Changed to CAPD in April 2008.  Now on PD with a cycler.  Working very part time - teaching music.  Love it.  Husband is Paul (we're both 46), daughter Molly is 13.
BigSky
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« Reply #12 on: October 08, 2009, 02:52:53 PM »

You can buy DHEA at the drugstore for 3-4 bucks a bottle.
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Jean
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« Reply #13 on: October 08, 2009, 11:29:11 PM »

Snake Oil, no doubt about it, and I dont care what it has in it, it is still snake oil.
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One day at a time, thats all I can do.
kristina
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« Reply #14 on: October 09, 2009, 01:51:31 AM »

Always be careful of experimentation in a desperate situation.
Any ideas of that kind must be checked and double-checked,
because the consequences of negative reactions,
as the kidneys and the body generally are so frail,
could be devastating.

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Bach was no pioneer; his style was not influenced by any past or contemporary century.
  He was completion and fulfillment in itself, like a meteor which follows its own path.
                                        -   Robert Schumann  -

                                          ...  Oportet Vivere ...
Des
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« Reply #15 on: October 09, 2009, 04:43:03 AM »

I have to say......... it will work in conjunction with (wait for it) a sauna and a ozone bubble bath....

(for the newbies - I was making a sarcastic statement)

I ams so sorry, I just couldn't resist. 
heheheheheh
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
RichardMEL
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« Reply #16 on: October 10, 2009, 05:17:57 AM »

lol @ sauna..

so you mean you won't have a thereputic bubble bath and sauna with me Des???? :( :( :( :( :( :( :(
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
Des
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« Reply #17 on: October 10, 2009, 06:34:11 AM »

I will as long as you promise not to promise me that it will cure me.

 :bandance; 
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Please note: I am no expert. Advise given is not medical advise but from my own experience or research. Or just a feeling...

South Africa
PKD
Jan 2010 Nephrectomy (left kidney)
Jan 2010 Fistula
Started April 2010 Hemo Dialysis(hate every second of it)
Nov 2012 Placed on disalibity (loving it)
MIbarra
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Stopping to smell the bluebonnets

« Reply #18 on: October 10, 2009, 07:41:47 AM »

 :rofl; Des!
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Cadaver transplant April 29, 2007
dwcrawford
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Getting the heck out of town.

« Reply #19 on: October 10, 2009, 08:26:25 AM »

A couple of years ago my  good friend Louise died of cancer.  Just a few months before someone had turned her on to an awful tasting tea made from some miracle roots.  She went into remission and was so happy and died a few months later from cancer.  What was more import?  She had a few months of hope (though false) or she was giving a snake oil?  I don't know, just asking. 

Of course that's not an issue with most of us.  We had proven resources :  dialysis and transplant.  So forget the untested methods.  Well, unless you can talk your neph into writing a prescription for a SPA?  MMMM, wonder if he'd do it???
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Come to think of it, nothing is funny anymore.

Nothing that I post here is intended for fact but rather for exploration into my personal thought processes.  Any slight, use of words with multiple connotations or other percieved insults are totally unintended.  I reserve my insults for private.
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« Reply #20 on: October 10, 2009, 02:49:09 PM »

Don't believe them. Some people are just stupid or they just want to sell their products so much that they have to believe in them. Remember if it sounds to good to be true, it probably is. Maybe if you pray really hard, kidney disease will go away.
jmz
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RichardMEL
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« Reply #21 on: October 10, 2009, 05:50:26 PM »

I will as long as you promise not to promise me that it will cure me.

 :bandance;

oh honey of course the bubble bath and sauna won't cure you, but I've got something that can take your mind off it all!!! Well for a few minutes anyway!  :rofl; >:D >:D >:D

Seriously back onto the topic - a lot of people thrive on hope, because some say the psychology is just as important as the pysology. I know just for myself that I live on the hope of a better life that a transplant hopefully will bring(even if it is for a relatively short time) and that is a goal that keeps me going day to day. Like the story of the lady that went into temporary remission - she had faith and hope that the tea would help - and perhaps, in a way, it did - by helping her believe strongy it would help. I don't for a minute endorse those people that pray on the sick and elderly and others who *need* hope of a cure or fantastic treatment "Just take this pill and you'll be fine!" but I can understand the psychology of it. The thing is a lot of those who do not know a lot about their conditions and both what causes it and what is bad for you (like most of us would say NO WAY if handed a "potassium pill" and told it will fix us up. Well yeah it will "fix" us for sure - permanently! :( ). Some folks don't know or understand and they are the ones who are most at risk from this type of thing - and that's the saddest part really. Maybe ignorance is bliss to some, but i prefer to know as much as I can about my situation so I can make *informed* choices.
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3/1993: Diagnosed with Kidney Failure (FSGS)
25/7/2006: Started hemo 3x/week 5 hour sessions :(
27/11/2010: Cadaveric kidney transplant from my wonderful donor!!! "Danny" currently settling in and working better every day!!! :)

BE POSITIVE * BE INFORMED * BE PROACTIVE * BE IN CONTROL * LIVE LIFE!
ryosaki
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« Reply #22 on: October 14, 2009, 08:12:22 AM »

Before i moved to Australia I lived in Cebu. There was this chinese herbal place that sold a product called Kidney wash. Although in a chinese herbal medicine place, it was a product from germany!! I started taking them, 5 pills, 3 times a day. I thought I'd give it a shot anyway. It actually incvreased my urine output and my creatnine levels also dropped!! I stopped taking them for some reason, I don't remember why!! but after a few months my kidneys failed. Who know's what my situation would be if I kept taking them. I know you guys will have alot to say about this...lol.
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BigSky
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« Reply #23 on: October 14, 2009, 08:37:23 AM »

Before i moved to Australia I lived in Cebu. There was this chinese herbal place that sold a product called Kidney wash. Although in a chinese herbal medicine place, it was a product from germany!! I started taking them, 5 pills, 3 times a day. I thought I'd give it a shot anyway. It actually incvreased my urine output and my creatnine levels also dropped!! I stopped taking them for some reason, I don't remember why!! but after a few months my kidneys failed. Who know's what my situation would be if I kept taking them. I know you guys will have alot to say about this...lol.


Sounds like a natural diuretic.

A guy here was taking a similar product,  never did get the name from the guy.  He since has had a tx. Anyway he  said he got increased urine output, he took it as a sign it was healing him.  Anyway the dietitian called the company, told them who she was and what was going on and they told here people going into renal failure should not use the product and that the product didnt preserve kidney function or stop renal failure.

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ryosaki
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« Reply #24 on: October 14, 2009, 09:11:18 AM »

I wish I had a picture of it! The pills I'm talking about claimed to reverse the damage to your kidneys.
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