Re: [PLD Polycystic Liver Disease] Apple cider vinegar and liver cysts

[smith...@mac.com]

Thank you Sanav. One other person is taking coconut and has also had increased bloating. I wonder is it the coconut oil?

I am sorry I don't know ACV. 

Sent from my iPhone 4s

Diane

On Jul 19, 2012, at 7:46 AM, sanav <san...@gmail.com> wrote:

Hi,

I just joined this group today.I was diagnosed with PLD in 2007 and in 2009 the Head of the Liver centre in Houston,Texas told me that I have millions of liver cyst and eventually they will have to transplant my liver.I've been following PLD website for a couple of years.I had plenty of other problems as well so I wanted to try ACV and I've been taking it twice a day for the past 2 months.It has helped me with the hyperacidity and allergies.

I've heard that vinegar is supposed to be bad for liver but I've read a lot about proton pump inhibitors and I feel unpasteurised organic ACV works exactly like these medicines.It makes our body alkaline and reduces GERD symptoms then why we can't take ACV.Is ACV differnt than the other types of vinegars.I would love to get the comments from experienced members of this group

Another thing I want to mention is that to counter my hypothyroid symptoms,I started taking Virgin Coconut oil and to my shock my liver enlarged very quickly after only 4 days of taking VCO twice a day.It actually enlarged as much as it had grown in past one year.I'm really disappointed and would like to warn other members about this.

thanks

Sanav

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[Diane Smith]

Dear Sanav,

I find your email so very interesting.

If you are in Houston can you possibly see Dr. Torres at the Mayo Clinic in Rochester Minnesota? He is the world's specialist when it comes to PLD. I personally have had no trouble with eating coconut or using coconut oil but I live in the tropics and these foods are local products. I have found your email very interesting and have passed it on to another friend who has taken lots of coconut oil. I do not use more than one tablespoon of oil and usually it is olive oil with a teaspoon of raw hempseed oil in it and I use it for salad dressing.

Enlarging liver is not good. Did you any pain? Tell me more about the coconut oil and ACV oh, is it apple cider vinegar? If so my mother in law drank a teaspoon or tablespoon every day of her life. She is now 96 and suffers from severe bone thinning disease. In the Philippines we use vinegar in our foods to leach the calcium from the bones so it makes a calcium rich broth. I suspect that a similar thing may happen with apple cider vinegar. ACV is an alcohol ferment meaning the yeast from the fruit digests the sugars and leaves behind alcohol. Then the alcohol ferments further into a vinegar. Lemon juice is preferable with a cystic liver. Yeast products are to be avoided as well as concentrated sugars. It is a two fold dilemma because we with cystic livers tend to get an overgrowth of yeast. This overgrowth of yeast is called candidacies. The yeast then demands sugar-y sweets to feed it.

~Diane

[sanav]

Dear Diane,

Thanks a lot for your reply.I used to live in Houston but I'm in UK now....my  hubby got posted in UK since last september.Even I'm surprised with Virgin coconut oil but disappointed too as I was doing better with quitting caffein and sugar,daily walks and changing my overall diet.But it was really unfortunate that within 4 days I saw huge increase in my cystic liver..I should have cooked my food in coconut oil rather than eating it raw.

For Apple cider vinegar,you have mentioned that it causes yeast and candiasis but I 've read it actually cures candiasis in the body.I really am confused but an unpasteurised organic apple cider vinegar actually makes body more alkaline so it should not increase the cysts.Furthermore,as you have mentioned that your mother in law had thinning bones in her later years..I read an article on the PLD website that the same thing happens to people who use antiacidity medicines like Prilosec etc for a very long time.So that means apple cider vinegar acts the same as these medicines.I know its a bit confusing but I hope if it can be used as an alternative to treatment consisting Gerd controlling medicines.

Also there is one more thing I've been wondering about.As mentioned on the PLD website that we should not consume dairy as cows are given hormones in USA.But I've read that hormones are not given to cows in UK and other European countries..so Can I consume milk and milk products as they are hormone free here?

Thanks

Sanav

On Friday, July 20, 2012 6:09:27 AM UTC+1, Diane Smith wrote:

Dear Sanav,

I find your email so very interesting.

If you are in Houston can you possibly see Dr. Torres at the Mayo Clinic in Rochester Minnesota? He is the world's specialist when it comes to PLD. I personally have had no trouble with eating coconut or using coconut oil but I live in the tropics and these foods are local products. I have found your email very interesting and have passed it on to another friend who has taken lots of coconut oil. I do not use more than one tablespoon of oil and usually it is olive oil with a teaspoon of raw hempseed oil in it and I use it for salad dressing.

Enlarging liver is not good. Did you any pain? Tell me more about the coconut oil and ACV oh, is it apple cider vinegar? If so my mother in law drank a teaspoon or tablespoon every day of her life. She is now 96 and suffers from severe bone thinning disease. In the Philippines we use vinegar in our foods to leach the calcium from the bones so it makes a calcium rich broth. I suspect that a similar thing may happen with apple cider vinegar. ACV is an alcohol ferment meaning the yeast from the fruit digests the sugars and leaves behind alcohol. Then the alcohol ferments further into a vinegar. Lemon juice is preferable with a cystic liver. Yeast products are to be avoided as well as concentrated sugars. It is a two fold dilemma because we with cystic livers tend to get an overgrowth of yeast. This overgrowth of yeast is called candidacies. The yeast then demands sugar-y sweets to feed it.

~Diane

On Jul 19, 2012, at 4:40 PM, smith...@mac.com wrote:

Thank you Sanav. One other person is taking coconut and has also had increased bloating. I wonder is it the coconut oil?

I am sorry I don't know ACV. 

Sent from my iPhone 4s

Diane

On Jul 19, 2012, at 7:46 AM, sanav <san...@gmail.com> wrote:

Hi,

I just joined this group today.I was diagnosed with PLD in 2007 and in 2009 the Head of the Liver centre in Houston,Texas told me that I have millions of liver cyst and eventually they will have to transplant my liver.I've been following PLD website for a couple of years.I had plenty of other problems as well so I wanted to try ACV and I've been taking it twice a day for the past 2 months.It has helped me with the hyperacidity and allergies.

I've heard that vinegar is supposed to be bad for liver but I've read a lot about proton pump inhibitors and I feel unpasteurised organic ACV works exactly like these medicines.It makes our body alkaline and reduces GERD symptoms then why we can't take ACV.Is ACV differnt than the other types of vinegars.I would love to get the comments from experienced members of this group

Another thing I want to mention is that to counter my hypothyroid symptoms,I started taking Virgin Coconut oil and to my shock my liver enlarged very quickly after only 4 days of taking VCO twice a day.It actually enlarged as much as it had grown in past one year.I'm really disappointed and would like to warn other members about this.

thanks

Sanav

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[Diane Smith]

These are great questions. i guess because they are some of the same questions I had as well.   I used to take Nexium. 

After I read about long term proton pump inhibitors use increasing the risk for hip fractures in the over 50 crowd, I stopped nexium. I also have stopped any vinegars. I am just not willing to a chance in breaking my bones. I am 65 and wish to live long and prosper!

I think all animal milk products are to be avoided. Think about when a woman lactates. During this time her hormones soar; they are elevated. It is the same with milking cows. Their hormones are high and are passed to the drinkers and eaters of cheese, milk, and yogurts. Premarin is made from a pregnant mare (horse) urine. The hormones are passed through the urine of animals. How much more so for the actual milk. 

I have found almond milk, almond or rice yogurt (avoid soy) and found these to be good. To try your hand at making your own almond yogurt try here.

http://www.pkdrecipes.com/?p=2818

or make your own almond milk

http://www.pkdrecipes.com/?p=65

or try almond cultured cheese

http://www.pkdrecipes.com/?p=2602

I lived in Houston for a summer and visited  the MD Anderson Institute there. I enjoyed Houston–cheap nice housing, great food, and a friendly city.

Warmly,
Diane

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[Diane Smith]

One more almond dill cheese recipe

http://www.pkdrecipes.com/?p=2121

~Diane

On Jul 21, 2012, at 9:20 AM, Diane Smith wrote:

http://www.pkdrecipes.com/?p=2602

[ank...@btinternet.com]

I'm intrigued about the vinegar theory, but am struggling to find any information on it.  Logically thinking, it should have a similar action to lemon juice, shouldn't it?  With both having a similar pH, I would think.  But when you talk about alkalinity, it's important to specify which body compartment your'e referring to.  Different body compartments have very different pH's!  When you talk about GERD, it's stomach pH that is affected.  I don't know what vinegar does in terms of GERD, but would be very interested to learn about it.  When Diane talks about alkalinity for cyst, I think she means urine pH, but it would be good to confirm this.  I think there is some evidence showing a connection between urine pH and PKD, but I don't think there is evidence for liver cysts and urine pH.  But please correct me if I'm wrong.

When you talk about candidiasis - do you mean as in thrush, ie a superficial infection caused by candida albicans or similar yeasts?  

[ank...@btinternet.com]

Are there oestrogens in milk, naturally?  I don't know, but just because they're in urine doesn't necessarily mean they're in milk too.  They can go straight from the blood into the urine, no need for milk to get involved...  But in any case, organic dairy products should have a lot less (if any) oestrogens.

Diane, osteoporosis can be caused by a lack of oestrogen.  That's why it's treated with hormone replacement therapy in postmenopausal women.  Soya products, and other phytoestrogens, help prevent osteoporosis by their oestrogen-modulating action.  They increase oestrogenic actions in postmenopausal women, and reduce it in premenopausal women.  The problem of course is how they influence cyst growth, and I know you believe they increase it.  I think this depends on the circumstances.  Postmenopausally, I'd say there might be a danger.  But premenopausally, they probably do more good than harm.  Although I admit I can't find any evidence for either theory... ;)

[Diane Smith]

Candiasis can present as vaginal yeast, oral mouth thrush or a more general systemic yeast overgrowth where there is a craving for sweets. I have experienced all three types of yeast overgrowths. The treatment from my doctors has been similar in all three situations:  alkalinity prevents yeast from over growing. The body and it's care are a balance. 

Sent from my iPhone 4s

Diane

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[Diane Smith]

I disagree. 

Sent from my iPhone 4s

Diane

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[Diane Smith]

PLD and alkalinity.

~Diane

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[Barb]

Diane, are you saying that you disagree with so many of our doctors? I am getting confused. Please be more specific. Thanks. 

Barb

Sent from my iPhone

[Barb]

Diane, all you have is what seems to be your own experience and no scientific studies. Are there links to the articles you mentioned? We must remember that that might be true for those with  other kidney conditions is not necessarily valid for those with pkd.

Barb

Sent from my iPhone

[Diane]

I am not sure what you are asking. Is it related to 

vinegar

candidiasis

something else?

 PLD and alkalinity

If you are asking about PLD and alkalinity, I have written here:

http://www.pkdiet.com/pld_alkalinity.php

Most of the medical articles on liver disease are NOT related to cystic livers but to cirrhosis, hepatitis, or other diseases of the liver. Collectively, together as a group, we have found alkalanity to be helpful in diminishing polycystic liver symptoms. Until we have clinical trials with individuals with liver cysts and alkalinity we will not KNOW that alkalinity is for sure the reason for this improvement.

Does this answer your question?

~Diane

[PLDiane]

I think our own experiences carries more weight than medical articles.
That's what this group is about; it is about us relating our
experiences. This is the support we have for each other.

I take it very seriously when a member writes that coconut oil causes
her liver cysts to grow. I want to know more. This is important
information.

It is our experiences that fuel the scientific studies, the clinical
trials, the future medical articles.

If several members with PLD, with liver cysts have notices that cow
milk, yogurt, and dairy causes liver cyst expansion, this carries
weight with me.

And it is true that works for kidney cysts may or may not hold true
for liver cysts. It just so happens that octreotide, sandostatin LAR
helps both kidney and liver cysts. The very first clinical trial
showed a reduction in KIDNEY cysts. Now there are several trials
showing octreotide greatly reduces liver cysts. More clinical trials
with liver cysts are needed.

~Diane

On Jul 22, 8:04 am, Barb <barb...@aol.com> wrote:
> Diane, all you have is what seems to be your own experience and no scientific studies. Are there links to the articles you mentioned? We must remember that that might be true for those with  other kidney conditions is not necessarily valid for those with pkd.
> Barb
>
> Sent from my iPhone
>

> On Jul 22, 2012, at 1:20 PM, Diane Smith <smithdi...@me.com> wrote:
>
>
>
>
>
>
>
> > PLD and alkalinity.
>
> > ~Diane
> > On Jul 21, 2012, at 11:48 PM, ank...@btinternet.com wrote:
>
> >> I'm intrigued about the vinegar theory, but am struggling to find any information on it.  Logically thinking, it should have a similar action to lemon juice, shouldn't it?  With both having a similar pH, I would think.  But when you talk about alkalinity, it's important to specify which body compartment your'e referring to.  Different body compartments have very different pH's!  When you talk about GERD, it's stomach pH that is affected.  I don't know what vinegar does in terms of GERD, but would be very interested to learn about it.  When Diane talks about alkalinity for cyst, I think she means urine pH, but it would be good to confirm this.  I think there is some evidence showing a connection between urine pH and PKD, but I don't think there is evidence for liver cysts and urine pH.  But please correct me if I'm wrong.
>
> >> When you talk about candidiasis - do you mean as in thrush, ie a superficial infection caused by candida albicans or similar yeasts?
>
> >> On Saturday, 21 July 2012 14:54:21 UTC+1, sanav wrote:
> >> Dear Diane,
> >> Thanks a lot for your reply.I used to live in Houston but I'm in UK now....my  hubby got posted in UK since last september.Even I'm surprised with Virgin coconut oil but disappointed too as I was doing better with quitting caffein and sugar,daily walks and changing my overall diet.But it was really unfortunate that within 4 days I saw huge increase in my cystic liver..I should have cooked my food in coconut oil rather than eating it raw.
>
> >> --
> >> You received this message because you are subscribed to the Google Groups "PLD Polycystic Liver Disease" group.

> >> To view this discussion on the web visithttps://groups.google.com/d/msg/polycysticliverdisease/-/0Fe7xz7jC1gJ.

> >> To post to this group, send email to polycysticl...@googlegroups.com.
> >> To unsubscribe from this group, send email to polycysticliverdi...@googlegroups.com.

> >> For more options, visit this group athttp://groups.google.com/group/polycysticliverdisease?hl=en.

[Diane]

No. I am saying bone density is caused by bone resorption occurring at a faster rate than bone formation. I read a recent clinical trial article that found if women went through menopause and started taking HRT hormone replacement therapy, their bone density improved but only for a short while then if they stopped HRT there was no improvement if once again started HRT.

I disagree with anyone with PLD being advised to take HRT hormone replacement therapy or birth control pills. 

I disagree that milk from animals has no hormones.

I disagree that yogurt from animals has no hormones.

I disagree that cheese from animals has no hormones.

I disagree that we need animal milks to keep bones strong as cultures who eat the most animal milks and proteins have the highest rate of osteoporosis.

I disagree that osteoporosis is caused by a lack of hormones.

I disagree that anyone with PLD, male or female be advised by their doctor to take hormones of any kind.

Certain cultures that eat a great deal of soy (Asians) have the highest rate of osteoporosis. Being Asian there is an increased risk for developing osteoporosis.

But for me osteoporosis is not the issue. For me it is related to fractures. If fractures occur from a certain medication or from a certain illness or from inheritance than specifically i try to find ways to prevent this.

When I read that proton pump inhibitors long term use in the over 50 age group had an increase in fractures, I asked my doctor to stop it.

When I read that calcium intake in women carried an increase risk for heart disease I asked my doctor if I could stop it.

When I read that osteoporosis medications long term use carried the risk for unusual unpredictable fractures I asked my doctor if I could stop it.

When I read that vitamin D intake from a recent clinical study showed that large doses prevented age related fractures, I asked my doctor if I could take it.

I disagree with these statements:

But premenopausally, they probably do more good than harm.

MY ANSWER
There are many medical articles showing that estrogen causes harm for liver cystic disease, either premenopausal or post menopausal.

The problem of course is how they influence cyst growth, and I know you believe they increase it. 

MY ANSWER
There are many medical articles showing that estrogen increases liver cyst growth.

Anything I say is my personal opinion.  Each of us has a choice to take what they find helpful and to lay aside that which seems not so helpful. Yours is always the final choice. I do not wish to debate issues. I am willing to give my opinion. I freely give my opinion. If you disagree with it then present medical articles backing up your opinion. I am open to change, to learning something new.  It is of no use to tear people down and to not allow them to freely express their opinions. We are here to support one another. No one is the ultimate say so. It is you who finally decides what to do and what not to do.

When something is related to someone's experience, I feel this holds more weight than a medical article. We are living within a body that has liver cysts. i take it very seriously when someone writes that a certain food, chemical, pill, caused their liver cysts to enlarge. This is the purpose of this group: to share information not to tear someone down for expressing their opinion. 

~Diane

[Diane]

There are so few medical articles on PLD. I noticed in my own family that all women who had children had severe Polycystic Liver Cysts. All medical articles start with a hypothesis. We are formulating these hypothesis for future medical articles on PLD. Now today it is known that PLD cyst formation is channeled by hormones. This is from our questioning, our observations.

~Diane

[sanav]

Hi,

I've started taking cider vinegar about 2 months back and it has controlled my acidity problems to a great extent and I've read it cures yeast infections as well.I'm really not sure how it works and thats the reason I wanted to know some info about that.

Sanav

[Diane]

Anke, 

Do you wish to try apple cider vinegar? Do you have symptoms of GERD? 

YOU WROTE

I don't think there is evidence for liver cysts and urine pH.  But please correct me if I'm wrong.

MY ANSWER

The evidence for alkalinity improving liver cyst symptoms comes directly from our experiences. Until we have a PLD Diet clinical trial we will not know if alkalinity helps diminish liver cyst symptoms. In the meantime we have our experiences to call upon. From our mutual experiences alkalinity is key to halting cystic liver symptoms.

PLD and Alkalinity.  I answered this question before for you. 

~Diane

[Diane]

YOU WROTE

Dear Diane,

Thanks a lot for your reply.I used to live in Houston but I'm in UK now....my  hubby got posted in UK since last september.Even I'm surprised with Virgin coconut oil but disappointed too as I was doing better with quitting caffein and sugar,daily walks and changing my overall diet.But it was really unfortunate that within 4 days I saw huge increase in my cystic liver..I should have cooked my food in coconut oil rather than eating it raw.

MY ANSWER

Did you eat only raw food? Did you by chance have any raw flaxseed? I found this gives me immediate bloating.

~Diane

[sanav]

Hi Diane,

I had read about almond milk but the problem is that I'm facing hypothyroid symptoms also and Almond is a strict no-no for hypothyroid patients..and same goes for cabbage and cruciferous group as well so basically people like me are in a very tight situation.I'm an Indian and I use turmeric everyday in my food at least once and somedays twice a day....so may be thats one thing which is good about my diet...I try to control oil in my diet,I've stopped taking caffein and sugar also...so I'm trying my best to get a better diet.

Sanav

[Diane]

YOU WROTE

Dear Diane,

Thanks a lot for your reply.I used to live in Houston but I'm in UK now....my  hubby got posted in UK since last september.Even I'm surprised with Virgin coconut oil but disappointed too as I was doing better with quitting caffein and sugar,daily walks and changing my overall diet.But it was really unfortunate that within 4 days I saw huge increase in my cystic liver..I should have cooked my food in coconut oil rather than eating it raw.

For Apple cider vinegar,you have mentioned that it causes yeast and candiasis but I 've read it actually cures candiasis in the body.I really am confused but an unpasteurised organic apple cider vinegar actually makes body more alkaline so it should not increase the cysts.Furthermore,as you have mentioned that your mother in law had thinning bones in her later years..I read an article on the PLD website that the same thing happens to people who use antiacidity medicines like Prilosec etc for a very long time.So that means apple cider vinegar acts the same as these medicines.I know its a bit confusing but I hope if it can be used as an alternative to treatment consisting Gerd controlling medicines.

Also there is one more thing I've been wondering about.As mentioned on the PLD website that we should not consume dairy as cows are given hormones in USA.But I've read that hormones are not given to cows in UK and other European countries..so Can I consume milk and milk products as they are hormone free here?

Thanks

Sanav

MY ANSWER

Here is a UK website on cow's milk. The researchers are from Spain. They tested cow milk and found it to have 20 chemicals.

http://www.dailymail.co.uk/sciencetech/article-2012050/The-cocktail-20-chemicals-glass-milk.html

Cow's milk contains a number of hormone, even when the cow's are NOT fed additional bovine growth hormones.

Apple cider vinegar, lemon juice and prilosec all react differently within a body that has liver cysts. The lemon juice helps squelch pain, bloating and diminishes symptoms. Vinegar, even Bragg's organic Apple Cider increases cystic liver symptoms. Prilosec and other proton pump inhibitors in theory (not proven) diminishes secretin. Secretin is a hormone that triggers liver cyst growth and expansion.

Fractures have been seen from prolonged use of proton pump inhibitors especially in the over 50 crowd.

Lemon juice has been reported to etch tooth enamel so some drink it with a straw.

Apple Cider vinegars are the waste product, the end product of yeast cells. It will make a body alkaline but in the long run I think Apple Cider Vinegar may make bones less dense and more susceptible to fracture.

~Diane

[Sangeeta Garg]

Hi Diane,

Thanks a lot for the explanation.Now I feel I should not take any chance with my liver with cider vinegar...

Sanav

[Diane]

Sanav,

Yes it is true cruciform vegetables do interfere with thyroid medications. It is good you try to avoid these. Ah you are Indian? Dahl, chapatis, and brown rice or red rice are very good for a cystic liver. I can see you are trying hard to change your diet. Continue to let us know how you are doing. Turmeric root is wonderful for protecting our DNA's integrity. Saffron is also useful for PLD.

Warmly,
Diane

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[Diane]

My pleasure.

~Diane

[BAR...@aol.com]

Below is what I was referring to.

Barb

[Diane]

Hi Barb,

This page

http://www.pkdiet.com/pld_alkalinity.php

has a great deal of information, what would you like clarified? The entire page?

If it is number 5, I am in the process of writing another website

AlkalineDiet.com

This site will have all the avoids and enjoy with links to the particular food, chemical, or medication and the whys. . .

Until then I will have to just try to answer individual questions that you may have.

~Diane

[mde...@aol.com]

Osteoporosis can be caused by long term steroid use.

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[Barb]

That's right. I am an example of that. I have been on prednisone for 15 years and my bones are, to quote my nephrologist, "like lace." That is probably why my lower back fractured this past fall. 

Barb

Sent from my iPhone

[Diane Smith]

Oh I am so sorry that prednisone makes bones so brittle.

Here is an article about long term prednisone and bone loss.

http://www.pkdiet.com/pdf/BoneTx/BoneTx.pdf

~Diane

[mde...@aol.com]

The hormones you are talking about are banned in Britain and in all EU countries on grounds of animal welfare not about contents of milk.

http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/can-the-hormones-in-milk-affect-breast-cancer

 

If you read the above article the hormones that are used in USA are indeed natural. This means all cows milk will have a certain amount and indeed we humans have also got the main constituent of the hormone naturally. My advice is a little British milk would therefore be no harm to you.

 

Mark

Somerset (Cattle and Cider country!)

 

[Diane]

Glad you live in cattle country.  The main food introduced to Hawaiians that did the most harm to health was beef and dairy cows. In a culture that was healthy, this food introduced many aging diseases that did not exist prior to the introduction of beef and dairy.

Animal milks, dairy, cheese no matter the country, it is harmful to both cystic  kidneys and cystic  liver.

Natural hormones that exist within the human body are harmful to liver cysts.

High phosphorus foods (dairy beef)  when eaten in large amounts for prolonged periods over a lifetime are harmful to a human body.

Animal hormones are harmful to a human body especially when it has liver cysts.

~Diane

[mde...@aol.com]

In Somerset (the UK 1) anyone that has to take long term steroids is now put on two additional drugs to protect bones.

Mark

[mde...@aol.com]

Dairy products contain calcium which can block the arteries and veins for people on dialysis only. Dialysis has a habit of washing the calcium out of bones and into the blood stream. A little calcium is required for bones so UK dieticians advise a limited amount and not a ban. Before I went on dialysis I was always encouraged to have lots of dairy. For several years I was drinking 4 pints of goats milk a day. Many particularly men with PKD are advised to limit beef if they have Gout.

 

Hormones that naturally occur in humans because it is produced by the human body should be safe otherwise the body would not produce it surely?

 

Mark

[Diane]

Goat's milk is preferable to cow's milk but almond milk, rice milk, oat milk are even better.

No, that is the real kicker. Our bodies produce these hormones naturally and it is these hormones that cause our liver cysts to grow voraciously. This is why doctors explain to us,  if we have severe PLD, we might consider an alternative to pregnancy.

For males they can be told to stay away from beer, ale, hops, which can produce false hormones that cause liver cyst  growth.

This is what I experienced. There are cumulative effects from false hormones. For some of us, we are lucky and it effects us immediately with painful episodes. For others it is apparent months or years later. So putting it together can be a bit of a leap.

~Diane

[Diane]

Yes I do get bloating but usually can pin point the cause.  I try not to eat late,  stopping food at about 4pm. I try to walk daily. I have rapid bowel transit time. If I become constipated it is because I have not eaten enough food or drunk enough water. I will have a raw salad at lunch and some brown rice. The whole grains help move things along. Stone fruit: peaches, nectarines, cherries etc prevent constipation.

It is funny that you relate bloating to a weight gain. I too noticed that bloating increased with weight gain but for me it was because i was eating the wrong foods.

 

Gain weight.

Lose weight

~Diane

On Aug 6, 2012, at 6:35 PM, saman...@verizon.net wrote:

Hi Diane -  I have a few questions.   I go see Dr. Torres for my checkup on August 29th.   I will be having my Cat Scan here in Manhattan first, so I don't have to waist time there doing it.  Lately I have been gasy, constipated and getting bloated.  I don't think it's my liver growing back though but of course I won't know till my Cat Scan.   I had a very good remnant, very little cysts that were in my remnant.   I have gained weight but body weight not my liver I know the difference, see it in my face, arms, legs, etc.  Can't figure out what I am eating that would cause this.  I started drinking Aloe Vera and it helps with the constipation.   I need to follow the PKD/PLD diet better I think.   But at night dinner time is when i feel the fullness,  even water.

Do you ever get bloated feelings anymore?

Thanks and take care - Marie

Aug 6, 2012 01:15:54 PM, polycysticl...@googlegroups.com wrote:

===========================================

Goat's milk is preferable to cow's milk but almond milk, rice milk, oat milk are even better.
No, that is the real kicker. Our bodies produce these hormones naturally and it is these hormones that cause our liver cysts to grow voraciously. This is why doctors explain to us,  if we have severe PLD, we might consider an alternative to pregnancy.
For males they can be told to stay away from beer, ale, hops, which can produce false hormones that cause liver cyst  growth.
This is what I experienced. There are cumulative effects from false hormones. For some of us, we are lucky and it effects us immediately with painful episodes. For others it is apparent months or years later. So putting it together can be a bit of a leap.

~Diane

On Aug 6, 2012, at 5:42 AM, mde...@aol.com wrote:

Dairy products contain calcium which can block the arteries and veins for people on dialysis only. Dialysis has a habit of washing the calcium out of bones and into the blood stream. A little calcium is required for bones so UK dieticians advise a limited amount and not a ban. Before I went on dialysis I was always encouraged to have lots of dairy. For several years I was drinking 4 pints of goats milk a day. Many particularly men with PKD are advised to limit beef if they have Gout.

 

Hormones that naturally occur in humans because it is produced by the human body should be safe otherwise the body would not produce it surely?

 

Mark

-----Original Message-----

From: Diane

To: polycysticliverdisease

Sent: Thu, 2 Aug 2012 20:05

Subject: Re: [PLD Polycystic Liver Disease] Apple cider vinegar and liver cysts












Glad you live in cattle country.  The main food introduced to Hawaiians that did the most harm to health was beef and dairy cows. In a culture that was healthy, this food introduced many aging diseases that did not exist prior to the introduction of beef and dairy.



Animal milks, dairy, cheese no matter the country, it is harmful to both cystic  kidneys and cystic  liver.




Natural hormones that exist within the human body are harmful to liver cysts.

High phosphorus foods (dairy beef)  when eaten in large amounts for prolonged periods over a lifetime are harmful to a human body.





Animal hormones are harmful to a human body especially when it has liver cysts.





~Diane



On Aug 2, 2012, at 5:21 AM, mde...@aol.com wrote:



The hormones you are talking about are banned in Britain and in all EU countries on grounds of animal welfare not about contents of milk.







http://cancerhelp.cancerresearchuk.org/about-cancer/cancer-questions/can-the-hormones-in-milk-affect-breast-cancer



 



If you read the above article the hormones that are used in USA are indeed natural. This means all cows milk will have a certain amount and indeed we humans have also got the main constituent of the hormone naturally. My advice is a little British milk would therefore be no harm to you.



 



Mark



Somerset (Cattle and Cider country!)



 



-----Original Message-----


From: sanav

To: polycysticliverdisease

[4ona...@gmail.com]

Hi Diabe,

Thanks for your replies. You seem to know what is good and not good for people with PLD. I get my first MRI on aug 10. Sorry if i missed reading your bio.  Have you had PLD a long time? What has been done to your liver? Does everyone with PLD need a liver transplant eventually? I don't have symptoms now.  Will it help to try the PLD diet? Thanks for your knowledge. I look forward daily to reAding everyone's posts. My ultrasound revealed many cysts and one 7 cm cyst. Can someone live a normal life with these? How often should i have ultrasounds, mri's, cat scans?  Thanks.,Lydia

Sent from my iPhone

[Diane Smith]

Hello

Glad to hear you are getting an MRI Aug 10. Ask that they take views of both your liver and kidney just to be sure how large your liver is and to be sure you do not have kidney cysts. I have been diagnosed with ADPKD since the age of 21 long before CT scans and MRI were available. Eventually I had a liver resection at the Mayo Clinic in Rochester Minnesota USA done by Dr. Nagorney some 15 years ago. Dr. Nagorney and Dr. Torres together thought of the first possibility to do a liver resection for PLD. About 8% of those with liver cysts eventually need some type of surgical removal of a huge polycystic liver. The other 92% require no treatment whatsoever. They have minimal symptoms. The other 8% may need a liver transplant, liver resection or perhaps a TAE procedure or monthly injections of octreotide LAR to reduce the size of their ever growing cystic liver.

CAN SOMEONE LIVE A NORMAL LIFE WITH LIVER CYSTS?

I am not sure of your age, but if you have no symptoms, no enlargement of your liver, are not drinking caffeine, do not plan to get pregnant or take hormones or birth control pills, it is likely you are among the 92%. If you would like to know for sure, try to see Dr. Torres at the Mayo Clinic. He can evaluate you fully. Dr. Hogan feels that a person with non-severe PLD can become severe if certain precautions are not taken. Listen to her PLD Webinar lecture. Scroll down to Dr. Hogan and from the pulldown menu select PLD Webinar.

PLD DIET

There are some who have been greatly helped by the PLD Diet. I don't know if it will help you or not. There are some things that all with liver cysts should avoid. Chemicals, pesticides, herbicides exposure should be minimized. According to the latest research the 2hit mechanism is in play with both PKD and PLD, with the manifestations of numerous liver and kidney cysts.

ALKALINITY PLD

This page contains some of the best healing foods for a PLD liver and some useful avoids.

STORIES

Many of our stories our here:

http://www.pkdiet.com/stories.php

Click on More Links

to read anyone's story who has been gracious and allowed a posting of their story.

Mine is   under Diane.

[4ona...@gmail.com]

Diane,

Thanks for your reply.  You are the best!

Sent from my iPhone

[Diane Smith]

Always, my pleasure.

~Diane

[mde...@aol.com]

Osteoporosis is also caused by long term dialysis.

 

Mark

-----Original Message-----
From: Diane Smith <smith...@mac.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

Sent: Sun, 22 Jul 2012 17:24
Subject: Re: [PLD Polycystic Liver Disease] Apple cider vinegar and liver cysts

I disagree. 

Sent from my iPhone 4s

Diane

On Jul 22, 2012, at 12:40 AM, "ank...@btinternet.com" <ank...@btinternet.com> wrote:

Are there oestrogens in milk, naturally?  I don't know, but just because they're in urine doesn't necessarily mean they're in milk too.  They can go straight from the blood into the urine, no need for milk to get involved...  But in any case, organic dairy products should have a lot less (if any) oestrogens.

Diane, osteoporosis can be caused by a lack of oestrogen.  That's why it's treated with hormone replacement therapy in postmenopausal women.  Soya products, and other phytoestrogens, help prevent osteoporosis by their oestrogen-modulating action.  They increase oestrogenic actions in postmenopausal women, and reduce it in premenopausal women.  The problem of course is how they influence cyst growth, and I know you believe they increase it.  I think this depends on the circumstances.  Postmenopausally, I'd say there might be a danger.  But premenopausally, they probably do more good than harm.  Although I admit I can't find any evidence for either theory... ;)

On Saturday, 21 July 2012 20:20:23 UTC+1, Diane Smith wrote:

These are great questions. i guess because they are some of the same questions I had as well.   I used to take Nexium. 

After I read about long term proton pump inhibitors use increasing the risk for hip fractures in the over 50 crowd, I stopped nexium. I also have stopped any vinegars. I am just not willing to a chance in breaking my bones. I am 65 and wish to live long and prosper!

I think all animal milk products are to be avoided. Think about when a woman lactates. During this time her hormones soar; they are elevated. It is the same with milking cows. Their hormones are high and are passed to the drinkers and eaters of cheese, milk, and yogurts. Premarin is made from a pregnant mare (horse) urine. The hormones are passed through the urine of animals. How much more so for the actual milk. 

I have found almond milk, almond or rice yogurt (avoid soy) and found these to be good. To try your hand at making your own almond yogurt try here.

http://www.pkdrecipes.com/?p=2818

or make your own almond milk

http://www.pkdrecipes.com/?p=65

or try almond cultured cheese

http://www.pkdrecipes.com/?p=2602

I lived in Houston for a summer and visited  the MD Anderson Institute there. I enjoyed Houston–cheap nice housing, great food, and a friendly city.

Warmly,
Diane

On Jul 21, 2012, at 3:54 AM, sanav wrote:

~Diane

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[Diane]

Is there anything the docs can do to help this?

Warmly,
Diane

[mde...@aol.com]

My mother (who has PKD and PLD, Addinsons and Arthritis) is suffering from it and there is nothing of any great use that can be done. She is semi paralysed in hospital at the moment with seriously damaged neck, shoulders, arms, wrists hips, knees and feet. She is awaiting neuro tests looking for checking her aneurysms and this morning they have found a lot clot in her lung.

[Diane]

This is from Brett, Shelley's husband. He gave me permission to post this:

My wife Shelley had written you and maybe spoke on the phone once about having her liver resection surgery. She had it done by Nagorney on July 31. We are still at Mayo due to some complications after surgery. Her ammonia level went way up and has caused much confusion. They were concerned about clotting in one of the main veins and went back in to clear the clot 2 days ago. She is currently in ICU recovering and her ammonia is still up. The transplant team is involved now and are keeping an eye on things. I hope it doesn't come to that. I just thought you might want to know. Your story and info was a main factor in coming here.
Thank you

Brett

[Diane]

MY ANSWER

Dear Brett

Thank you so much for your post. I am so sorry your wife has had complications. Is Dr. Torres there? Please inform him of your wife's situation. I too had a stricture on one of my main veins to the body not to the liver. It sounds like your wife has a clot on the one remaining vein that feeds the liver.

I can understand the transplant team becoming involved. The doctor that heads up the transplant is very very kind. Do you understand what the doctors are thinking? The liver has only so many veins that feed it, that nourish it. If your wife's remaining vein becomes occluded she would go to the top of the transplant list for a liver. Please tell Shelley I am really hoping she makes a recovery. If a transplant is in the cards then the Mayo is the best place to be for this.

How are you holding up? Shelley will need you to be strong now. I realize this can take a toll on a relationship especially if you and Shelley are very close and great friends as well as husband and wife. Brett continue to be the support that you are. I am hopeful for Shelly's recovery.

May I post your update on Shelly's condition to the PLD support group?

lots of hugs and support for the two of you.

Warmly,

Diane

[Diane]

Oh Mark I am so sorry your Mom is suffering so. A clot on the lung can be very dangerous. Patrick, a person with PKD in California  got two bilateral lung clots following his kidney transplant. He is now on constant coumadin blood thinner. He monitors this at home and through his doctor.

~Diane

[Diane]

MORE FROM BRETT AND SHELLEY:

Yes. You can post it. They cleared the clots and she has good flow to and from the liver now. Her stomach ulcer along with being on blood thinner for the clotting made everything worse increasing the ammonia level. She was talking better and less confused this morning which is a sign the ammonia level is dropping. The only negative blood lab was billirubin being up to 5. They also mentioned the INR being elevated. I haven't met Torres yet. Nagorney and Dr.s from their transplant team is all I've talked to. She hasn't eaten in almost 8 days. They have to give her the laxative lactulose to reduce the ammonia in her system. Hoping for more improvement today. Thanks

Brett

[mde...@aol.com]

It has arisen as they took her off Clopidogrel ready for her carpel tunnel ops which have since been cancelled.

She has today started another drug.

[Diane]

Sometimes these things happen. I hope your Mom gets better.

Warmly,
Diane

[mde...@aol.com]

Yes they do but that's what they have blamed.

 

Thanks

M

[mde...@aol.com]

Yes they do but that's what they have blamed.

 

Thanks

M

[Phyllis]

My brother had a kidney transplant in May 2011 and in January, when being checked for a spread of lymphoma, they found numerous lung and leg clots.  He was on heparin and coumadin for months but has been told he will have to remain on coumadin for the remainder of his life.  He was almost lucky he got lymphoma who a lung clot may have killed him.

Phyllis

[mde...@aol.com]

There are two drugs you can take to help protect the bones when you are on long term steroids. Everyone on steroids gets them at my GP's surgery. Ask your consultants as unfortunately I didnt remember the names.

 

Mark

-----Original Message-----
From: Diane Smith <smith...@me.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[mde...@aol.com]

Thanks

 

I hope all is well

-----Original Message-----
From: Phyllis <phyl...@hotmail.com>
To: polycysticliverdisease <polycysticl...@googlegroups.com>

[Diane]

Glad to hear your brother is a lucky survivor.

Warmly,
Diane