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CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
:? Hi All

My girlfriend has recently been diagnosed with ALS and has been in touch with many Associations here in Australia. Just yesterday she was telling me of a month long tratment in china that costs a lot of money. Involved is 8 hrs a day of stem cell treatment, accupuncture, massage, reflexology etc....... There is only 2 ppl that have been there that she can contact and given that this forum has so many members I wondered if anyone has been involved with or heard of this treatment so that I can pass as much info to her as possible.............

One of the couples that have been is planning on returning for a second round............this in itself worries me.

Any info or advice would be greatly appreciated.

Thanks In Advance

Cathy
 

patricia1

Very helpful member
Joined
Sep 18, 2006
Messages
1,149
Reason
PALS
Diagnosis
7/1999
Country
US
State
newjersey
City
lopatcong NJ
It should worry you. the conditions in china arent like the ones here . I know of someone who went to china he came back much better however it was short lived and he return again after a year and didnt see any improvement He is a lot poorer. It cost a lot of money 10,000 and up. I am sorry but there is no cure no where yet. Pat
 

CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Thanks Patricia

:) Hi Patricia

We realise there is no cure as yet.......... She wants to prolong her life as much as possible.. All good and well if they can guarantee a prolonged stage of her life while still well..........however she doesnt want the yucky stages experienced by her brother within a short time to be prolonged..........Garry was only with us a year from diagnosed to the end.

Thank you for your words of your friends experience.......... I will pass all info on to her.

Cathy
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
There have been many members here and on other forums that have spent from $20,000 to $100,000 on treatments in China and the Caribbean. Ask yourself why these treatments are only done in third rate or 3rd world countries. Some people have shown some improvement for 3 months or so but I know of not one person that has shown marked improvement. Believe me, if it worked I'd sell my soul for it. Right now it doesn't work. Please tell your friend not to waste their money. It is not going to work.
AL.
 

CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Hi Al

I am trying to do exactly that..........At the same time tough she has vowed to be positive.............so i am trying to find a way that will not go against that............ I am positive that she will do all she can to be well as long as she can...........however that kind of money to me is better speant having the time of what life is left not buying 3 more months................Rilutek will do that without spending that kind of money..............I suppose tho the choice is ultimately hers and her husbands to be.......we will support whatever she decides....meanwhile through this forum and her research hopefully she will find the right info first..........Keep up the Great Work..If i didnt have my head up my arse when Garry was suffering from ALS I know this would have been helpful then too.

Thanks Al :)
 

CindyM

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Learn about ALS
Country
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New England
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Anytown
Poeple want to grasp at any hope but somegtimes false hope is the worst kind. I hope they decide to use their money for a wonderful trip that will leave her loved ones with great memories of their time together. That sounds positive but also realistic to me. JMO. Cindy
 

CathyAmanda

Member
Joined
Nov 26, 2007
Messages
17
Reason
Friend was DX
Country
AUS
State
South Australia
City
Adelaide
Thanks CindyM

I agree....I guess I was hoping a little also that someone would post not that it cured them as I know that would be unrealistic but that it had helped.........I think I knew in my heart that this wouldn't happen though....I really hope she makes the right decision.

Thanks Again Cindy The work you do here is also great and appreciated a lot.

Cathy
 

CindyM

Moderator emeritus
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Learn about ALS
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City
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You are welcome, Cathy. Glad to be of help whenever and however possible.
 

hammel

New member
Joined
May 28, 2009
Messages
1
Reason
PALS
Diagnosis
01/2007
Country
US
State
hammel
City
hammel
If i didnt have my head up my arse when Garry was suffering from ALS I know this would have been helpful then too.
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
Mexico

I have a friend that is saying she is going to mexico for treatment. I don't know? Or maybe I do!

Lorie:?:
 

Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
My friend went to Mexico for $50,000 and is no better off.

AL.
 

Paty

Distinguished member
Joined
Apr 1, 2006
Messages
194
Reason
PALS
Country
Mexico
State
Baja California
City
Mexicali
I totally agree with Al, don't let these kind of people fool you.

I totally agree with Al, believe me he's right I am mexican and live in Mexicali, Baja California, México; there is no cure here or everywhere else, when my husband was sick my daugher sent for some "WONDERFUL MIRACLE CURE PILLS" somewhere in China their price $500 dlls. for a month's supply, he took them for month's, they didn't do any good to my husband, then she tried, some shark embryion shots, which according to a person here in Baja (Tijuana) was a miracle cure, nothing worked.

Don't let these kind of people fool you.

They are only quacks.


Paty
Baja California, México
CALS to late husband Jorge
DX Oct. 2005 Died Dec.30th. 2007
 

Lorie

Senior member
Joined
May 17, 2007
Messages
546
Reason
Loved one DX
Country
Uni
State
Alabama
City
Mobile
China

Here in Mobile a few years ago. A guy with ALS went to China for treatment. He came back, progressed rapidly and died. If I can find the article I will post it.


Lorie
 

Erica

Distinguished member
Joined
Jun 3, 2009
Messages
252
Reason
PALS
Diagnosis
07/0009
Country
US
State
XXX
City
XXX
stem cell

Hi, Have you heard of X-cell clinic in Germany [**link removed** known fraud site]
Any comments? THX, Cookie
 
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Al

Moderator emeritus
Joined
May 25, 2004
Messages
7,960
Reason
PALS
Diagnosis
10/2003
Country
CA
State
On
City
NW of Toronto
Don't waste your money. Stem cells don't work. Maybe later but not now.

AL.
 
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