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Paola Viladoms  
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 More options May 14 2012, 4:08 pm
From: Paola Viladoms <paolavilad...@gmail.com>
Date: Mon, 14 May 2012 15:08:24 -0500
Local: Mon, May 14 2012 4:08 pm
Subject: Acupuncture
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Hi,

Does anybody have tried Acupunture? I   am doing the alkaline diet and would like to know if there are other alternatives to prevent my cysts from growing.

Thank you

Paola Viladoms

Sent from my iPhone


 
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Petra Ö  
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 More options May 15 2012, 3:17 am
From: Petra Ö <petraosterg...@gmail.com>
Date: Tue, 15 May 2012 00:17:19 -0700 (PDT)
Local: Tues, May 15 2012 3:17 am
Subject: Re: Acupuncture
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Dear Paola,

I just began the alkaline diet and will commence acupuncture next
week, with a well respected doctor in Sweden, dr Nie. She usually sees
her patients once a day for 5 to 10 days, but do not know what she
will do with my condition. Will keep you posted!

warmly,
Petra

On May 14, 10:08 pm, Paola Viladoms <paolavilad...@gmail.com> wrote:


 
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Paola Viladoms  
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 More options May 15 2012, 9:03 am
From: Paola Viladoms <paolavilad...@gmail.com>
Date: Tue, 15 May 2012 08:03:03 -0500
Local: Tues, May 15 2012 9:03 am
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
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Dear Petra,

In two weeks I will check on my cysts and after that maybe the Acupunture  can help me with the pain I have on my right side. I  appreciate very much your replay and I will keep you posted too.
I am very fortunate to have this group.

Warmly,
Paola

Sent from my iPhone

On May 15, 2012, at 2:17 AM, Petra Ö <petraosterg...@gmail.com> wrote:


 
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Janet Powell  
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 More options May 15 2012, 9:22 am
From: Janet Powell <mickja...@hotmail.com>
Date: Tue, 15 May 2012 13:22:48 +0000
Local: Tues, May 15 2012 9:22 am
Subject: RE: [PLD Polycystic Liver Disease] Re: Acupuncture
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I would be very interested to see if it helps with pain control.

I really struggle with the pain on the right side.

I really hope it goes well.
X


 
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mdeb...@aol.com  
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 More options May 16 2012, 10:37 am
From: mdeb...@aol.com
Date: Wed, 16 May 2012 10:37:46 -0400 (EDT)
Local: Wed, May 16 2012 10:37 am
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
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Nothing prevents cysts from growing.

There are however some drugs which are currently at trial stage that are said to slow down cyst growth including Tolvtpan (my brother who has PKD is on this trial in Birmingham).

Controlling your blood pressure can also slow down cyst growth to a degree. Some consultants say avoiding high stress jobs and contact sports also help.

Mark


 
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mdeb...@aol.com  
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 More options May 16 2012, 10:06 am
From: mdeb...@aol.com
Date: Wed, 16 May 2012 10:06:09 -0400 (EDT)
Local: Wed, May 16 2012 10:06 am
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
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Acupuncture is one of many treatments offered by the Royal United Hospital Pain Management Service in Bath amongst a number of other NHS hospitals. My brother has had this treatment privately for years as it cured him of ME when he was a teenager. He goes once every 6 months for a boost to a private clinic and still finds it beneficial.

Mark


 
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Janet Powell  
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 More options May 16 2012, 12:33 pm
From: Janet Powell <mickja...@hotmail.com>
Date: Wed, 16 May 2012 16:33:44 +0000
Local: Wed, May 16 2012 12:33 pm
Subject: RE: [PLD Polycystic Liver Disease] Re: Acupuncture
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Thanks for that,I may give it a try.

To: polycysticliverdisease@googlegroups.com
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
From: mdeb...@aol.com
Date: Wed, 16 May 2012 10:06:09 -0400

Acupuncture is one of many treatments offered by the Royal United Hospital Pain Management Service in Bath amongst a number of other NHS hospitals. My brother has had this treatment privately for years as it cured him of ME when he was a teenager. He goes once every 6 months for a boost to a private clinic and still finds it beneficial.

Mark


 
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smithdi...@mac.com  
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 More options May 16 2012, 1:29 pm
From: smithdi...@mac.com
Date: Wed, 16 May 2012 07:29:05 -1000
Local: Wed, May 16 2012 1:29 pm
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
Print | Individual message | Show original | Report this message | Find messages by this author

Some things can halt kidney cyst growth and some things can halt liver cyst growth. Tolvaptan works only to diminish kidney cysts. Octreotide works on both liver and kidney cyst growth. The diet seems to halt cyst growth. I have experienced halting of cyst growth for 15 years. It was not until I started on octreotide that I have experienced a diminishing, a lessening in size of my PLD and PKD. This has been documented by yearly MRI's and most recently I have experienced an improvement in both kidney functioning and liver functioning. This has improved as I age. Of course I attribute this diet.  Recently some researchers have become interested in testing this diet with PKD and PLD. I am not sure if it will pan out, just an interest is there. In the meantime I am also participating in a genetic study to see if I might have a mutant gene that prevents me from aging normally with ADPKD. Past genetic testing has shown that I do indeed have the more aggressive gene: PLD1. This has an earlier onset of symptoms (around age 50 with end stage renal disease).  All my relatives with PKD are now gone. They succumbed to kidney failure at a young age, in their 40's. I am the only family survivor. At almost 65 my kidney and liver functioning are improving and my cysts are shrinking.

LIVER CYSTS
Today if we are talking about liver cysts, diet helps diminish symptoms; diet helps halt a cystic liver from enlarging To date if we have massive PLD eventually we will each require some type of surgical intervention to de-bulk a huge cystic liver. This can be a liver transplant; a liver resection; or a TAE procedure. Octreotide works only as long as the individual takes the drug. The drug is very expensive $2500/injection. Dr. Drenth in Holland is using another drug that is given subcutaneously 90mg. The Negri Institute in Italy is using octreotide. The Mayo clinic is using 20-40 mg Sandostatin LAR. Belgium is also conducting clinical trials.

In the past, I have very stubbornly tried all kinds of alternative treatments, acupuncture, homeopathy, electric acupuncture, holistic medicine, flower therapy, psychic surgeons, healing waters, and more. Some worked for a month or two then the cysts came back with a vengeance. I have a few friends with PLD who are giving a lifetime treatment to homeopathy. With homeopathy perhaps I was too sick, my liver was too large, it worked for only three months for me. Acupuncture helped me with muscle pain. Yoga helps. Pilates helps. The only medicine that did not work with me was ayurvedic. I had no response. Let me know if any have had results from alternative treatments.

KIDNEY CYSTS
With kidney cysts, some have tried triptolide or lei gong teng. Unfortunately for this person, he is now awaiting a kidney transplant and on dialysis.  Tolvaptan works in clinical trials but one does urinate frequently and we must keep up with the water loss. Some have tried water therapy and found it too hard to drink that much water.

There is hope for each of us.

Here is an article on ADPKD, kidney cysts, where they feel fetal environment might influence outcome.

Kidney Int. 2012 May;81(9):814-5. doi: 10.1038/ki.2012.8.
The fetal environment: a critical phase that determines future renal outcomes in autosomal dominant polycystic kidney disease.
Chapman AB.
Source
Emory University School of Medicine, Clinical Interaction Network, Atlanta, Georgia, USA.
Abstract
Orskov and colleagues demonstrate the impact of birth weight on the mean age of end-stage renal disease (ESRD) in a large Danish ADPKD cohort. Each kilogram of birth weight extended the mean age of ESRD onset by 1.7 years. Placental insufficiency, activation of the renin-angiotensin-aldosterone system, increased fetal vasopressin levels, compensatory increases in insulin like growth factor-I, and a reduction in total nephron number may all contribute to this observation. Collectively, these changes result in an accelerated pace of cyst formation and expansion, and an inability to maintain glomerular hyperfiltration during kidney expansion which results in a more rapid progression to ESRD. Therefore the intrauterine environment may play a critical role in disease severity in ADPKD.
Warmly,
Diane

On May 16, 2012, at 4:37 AM, mdeb...@aol.com wrote:


 
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Janet Powell  
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 More options May 16 2012, 1:46 pm
From: Janet Powell <mickja...@hotmail.com>
Date: Wed, 16 May 2012 17:46:15 +0000
Local: Wed, May 16 2012 1:46 pm
Subject: RE: [PLD Polycystic Liver Disease] Acupuncture
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I practice Tai Chi a few times a week.I feel it is very beneficial,it provides a workout-very gentle.I also find it really helps open up my airways and helps internal organs and circulation.

I would recommend anyone to give it a go.

X

From: smithdi...@mac.com
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
Date: Wed, 16 May 2012 07:29:05 -1000
To: polycysticliverdisease@googlegroups.com

Some things can halt kidney cyst growth and some things can halt liver cyst growth. Tolvaptan works only to diminish kidney cysts. Octreotide works on both liver and kidney cyst growth. The diet seems to halt cyst growth. I have experienced halting of cyst growth for 15 years. It was not until I started on octreotide that I have experienced a diminishing, a lessening in size of my PLD and PKD. This has been documented by yearly MRI's and most recently I have experienced an improvement in both kidney functioning and liver functioning. This has improved as I age. Of course I attribute this diet.  Recently some researchers have become interested in testing this diet with PKD and PLD. I am not sure if it will pan out, just an interest is there. In the meantime I am also participating in a genetic study to see if I might have a mutant gene that prevents me from aging normally with ADPKD. Past genetic testing has shown that I do indeed have the more aggressive gene: PLD1. This has an earlier onset of symptoms (around age 50 with end stage renal disease).  All my relatives with PKD are now gone. They succumbed to kidney failure at a young age, in their 40's. I am the only family survivor. At almost 65 my kidney and liver functioning are improving and my cysts are shrinking.
LIVER CYSTSToday if we are talking about liver cysts, diet helps diminish symptoms; diet helps halt a cystic liver from enlarging To date if we have massive PLD eventually we will each require some type of surgical intervention to de-bulk a huge cystic liver. This can be a liver transplant; a liver resection; or a TAE procedure. Octreotide works only as long as the individual takes the drug. The drug is very expensive $2500/injection. Dr. Drenth in Holland is using another drug that is given subcutaneously 90mg. The Negri Institute in Italy is using octreotide. The Mayo clinic is using 20-40 mg Sandostatin LAR. Belgium is also conducting clinical trials.
In the past, I have very stubbornly tried all kinds of alternative treatments, acupuncture, homeopathy, electric acupuncture, holistic medicine, flower therapy, psychic surgeons, healing waters, and more. Some worked for a month or two then the cysts came back with a vengeance. I have a few friends with PLD who are giving a lifetime treatment to homeopathy. With homeopathy perhaps I was too sick, my liver was too large, it worked for only three months for me. Acupuncture helped me with muscle pain. Yoga helps. Pilates helps. The only medicine that did not work with me was ayurvedic. I had no response. Let me know if any have had results from alternative treatments.
KIDNEY CYSTSWith kidney cysts, some have tried triptolide or lei gong teng. Unfortunately for this person, he is now awaiting a kidney transplant and on dialysis.  Tolvaptan works in clinical trials but one does urinate frequently and we must keep up with the water loss. Some have tried water therapy and found it too hard to drink that much water.
There is hope for each of us.

Here is an article on ADPKD, kidney cysts, where they feel fetal environment might influence outcome.
Kidney Int. 2012 May;81(9):814-5. doi: 10.1038/ki.2012.8.The fetal environment: a critical phase that determines future renal outcomes in autosomal dominant polycystic kidney disease.Chapman AB.SourceEmory University School of Medicine, Clinical Interaction Network, Atlanta, Georgia, USA.AbstractOrskov and colleagues demonstrate the impact of birth weight on the mean age of end-stage renal disease (ESRD) in a large Danish ADPKD cohort. Each kilogram of birth weight extended the mean age of ESRD onset by 1.7 years. Placental insufficiency, activation of the renin-angiotensin-aldosterone system, increased fetal vasopressin levels, compensatory increases in insulin like growth factor-I, and a reduction in total nephron number may all contribute to this observation. Collectively, these changes result in an accelerated pace of cyst formation and expansion, and an inability to maintain glomerular hyperfiltration during kidney expansion which results in a more rapid progression to ESRD. Therefore the intrauterine environment may play a critical role in disease severity in ADPKD.Warmly,
Diane

On May 16, 2012, at 4:37 AM, mdeb...@aol.com wrote:
Nothing prevents cysts from growing.

There are however some drugs which are currently at trial stage that are said to slow down cyst growth including Tolvtpan (my brother who has PKD is on this trial in Birmingham).

Controlling your blood pressure can also slow down cyst growth to a degree. Some consultants say avoiding high stress jobs and contact sports also help.

Mark


 
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To post a message you must first join this group.
Please update your nickname on the subscription settings page before posting.
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smithdi...@mac.com  
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 More options May 16 2012, 2:06 pm
From: smithdi...@mac.com
Date: Wed, 16 May 2012 08:06:02 -1000
Local: Wed, May 16 2012 2:06 pm
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
Print | Individual message | Show original | Report this message | Find messages by this author

Tai Chi is a wonderful exercise. Here early in the morning at shopping malls, instructors gather individuals together for an early morning movement in Tai Chi. In San Francisco at Washington Square one can watch (or participate) in early morning Tai Chi. Great going Janet. Does it incorporate breathing into the technique?

~Diane

On May 16, 2012, at 7:46 AM, Janet Powell wrote:


 
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Janet Powell  
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 More options May 16 2012, 3:34 pm
From: Janet Powell <mickja...@hotmail.com>
Date: Wed, 16 May 2012 19:34:32 +0000
Local: Wed, May 16 2012 3:34 pm
Subject: RE: [PLD Polycystic Liver Disease] Acupuncture
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Yes it does incorporate breathing, although not at beginner stage it starts at continuation. Also the warm ups have a range of movements and if they are done very slightly differently each time , a different part of the body is used. I am back at Tai chi after a break of 6 weeks , because of my bleed and infection. I just love it and the benefits are endless  

Jan
 From: smithdi...@mac.com
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
Date: Wed, 16 May 2012 08:06:02 -1000
To: polycysticliverdisease@googlegroups.com

Tai Chi is a wonderful exercise. Here early in the morning at shopping malls, instructors gather individuals together for an early morning movement in Tai Chi. In San Francisco at Washington Square one can watch (or participate) in early morning Tai Chi. Great going Janet. Does it incorporate breathing into the technique?
~Diane

On May 16, 2012, at 7:46 AM, Janet Powell wrote:I practice Tai Chi a few times a week.I feel it is very beneficial,it provides a workout-very gentle.I also find it really helps open up my airways and helps internal organs and circulation.

I would recommend anyone to give it a go.

X

From: smithdi...@mac.com
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
Date: Wed, 16 May 2012 07:29:05 -1000
To: polycysticliverdisease@googlegroups.com

Some things can halt kidney cyst growth and some things can halt liver cyst growth. Tolvaptan works only to diminish kidney cysts. Octreotide works on both liver and kidney cyst growth. The diet seems to halt cyst growth. I have experienced halting of cyst growth for 15 years. It was not until I started on octreotide that I have experienced a diminishing, a lessening in size of my PLD and PKD. This has been documented by yearly MRI's and most recently I have experienced an improvement in both kidney functioning and liver functioning. This has improved as I age. Of course I attribute this diet.  Recently some researchers have become interested in testing this diet with PKD and PLD. I am not sure if it will pan out, just an interest is there. In the meantime I am also participating in a genetic study to see if I might have a mutant gene that prevents me from aging normally with ADPKD. Past genetic testing has shown that I do indeed have the more aggressive gene: PLD1. This has an earlier onset of symptoms (around age 50 with end stage renal disease).  All my relatives with PKD are now gone. They succumbed to kidney failure at a young age, in their 40's. I am the only family survivor. At almost 65 my kidney and liver functioning are improving and my cysts are shrinking.
LIVER CYSTSToday if we are talking about liver cysts, diet helps diminish symptoms; diet helps halt a cystic liver from enlarging To date if we have massive PLD eventually we will each require some type of surgical intervention to de-bulk a huge cystic liver. This can be a liver transplant; a liver resection; or a TAE procedure. Octreotide works only as long as the individual takes the drug. The drug is very expensive $2500/injection. Dr. Drenth in Holland is using another drug that is given subcutaneously 90mg. The Negri Institute in Italy is using octreotide. The Mayo clinic is using 20-40 mg Sandostatin LAR. Belgium is also conducting clinical trials.
In the past, I have very stubbornly tried all kinds of alternative treatments, acupuncture, homeopathy, electric acupuncture, holistic medicine, flower therapy, psychic surgeons, healing waters, and more. Some worked for a month or two then the cysts came back with a vengeance. I have a few friends with PLD who are giving a lifetime treatment to homeopathy. With homeopathy perhaps I was too sick, my liver was too large, it worked for only three months for me. Acupuncture helped me with muscle pain. Yoga helps. Pilates helps. The only medicine that did not work with me was ayurvedic. I had no response. Let me know if any have had results from alternative treatments.
KIDNEY CYSTSWith kidney cysts, some have tried triptolide or lei gong teng. Unfortunately for this person, he is now awaiting a kidney transplant and on dialysis.  Tolvaptan works in clinical trials but one does urinate frequently and we must keep up with the water loss. Some have tried water therapy and found it too hard to drink that much water.
There is hope for each of us.

Here is an article on ADPKD, kidney cysts, where they feel fetal environment might influence outcome.
Kidney Int. 2012 May;81(9):814-5. doi: 10.1038/ki.2012.8.The fetal environment: a critical phase that determines future renal outcomes in autosomal dominant polycystic kidney disease.Chapman AB.SourceEmory University School of Medicine, Clinical Interaction Network, Atlanta, Georgia, USA.AbstractOrskov and colleagues demonstrate the impact of birth weight on the mean age of end-stage renal disease (ESRD) in a large Danish ADPKD cohort. Each kilogram of birth weight extended the mean age of ESRD onset by 1.7 years. Placental insufficiency, activation of the renin-angiotensin-aldosterone system, increased fetal vasopressin levels, compensatory increases in insulin like growth factor-I, and a reduction in total nephron number may all contribute to this observation. Collectively, these changes result in an accelerated pace of cyst formation and expansion, and an inability to maintain glomerular hyperfiltration during kidney expansion which results in a more rapid progression to ESRD. Therefore the intrauterine environment may play a critical role in disease severity in ADPKD.Warmly,
Diane

On May 16, 2012, at 4:37 AM, mdeb...@aol.com wrote:Nothing prevents cysts from growing. There are however some drugs which are currently at trial stage that are said to slow down cyst growth including Tolvtpan (my brother who has PKD is on this trial in Birmingham). Controlling your blood pressure can also slow down cyst growth to a degree. Some consultants say avoiding high stress jobs and contact sports also help. Mark


 
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smithdi...@mac.com  
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 More options May 16 2012, 3:52 pm
From: smithdi...@mac.com
Date: Wed, 16 May 2012 09:52:04 -1000
Local: Wed, May 16 2012 3:52 pm
Subject: Re: [PLD Polycystic Liver Disease] Acupuncture
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Sounds good Jan.

~Diane
On May 16, 2012, at 9:34 AM, Janet Powell wrote:


 
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mdeb...@aol.com  
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 More options May 16 2012, 3:48 pm
From: mdeb...@aol.com
Date: Wed, 16 May 2012 15:48:53 -0400 (EDT)
Local: Wed, May 16 2012 3:48 pm
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
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My brother has PKD and that is the main thing he has it for now.

Mark


 
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smithdi...@mac.com  
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 More options May 16 2012, 3:53 pm
From: smithdi...@mac.com
Date: Wed, 16 May 2012 09:53:30 -1000
Local: Wed, May 16 2012 3:53 pm
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
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Mark how many siblings do you have? Do they all have PKD?

~Diane
On May 16, 2012, at 9:48 AM, mdeb...@aol.com wrote:


 
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mdeb...@aol.com  
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 More options May 16 2012, 3:58 pm
From: mdeb...@aol.com
Date: Wed, 16 May 2012 15:58:43 -0400 (EDT)
Local: Wed, May 16 2012 3:58 pm
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
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Just the one. 70% of my mothers side of the family have got PKD.

Mark


 
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smithdi...@mac.com  
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 More options May 17 2012, 5:34 pm
From: smithdi...@mac.com
Date: Thu, 17 May 2012 11:34:07 -1000
Local: Thurs, May 17 2012 5:34 pm
Subject: Re: [PLD Polycystic Liver Disease] Re: Acupuncture
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With me, its 3 out of 5 who have PKD. I am the lone survivor with PKD. Hope to see you all around when I am 120!

~Diane
On May 16, 2012, at 9:58 AM, mdeb...@aol.com wrote:


 
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