Re: [PLD Polycystic Liver Disease] Need Advice

[Diane Smith]

Dear Ng,

Welcome to this PLD support group. Can you tell me a bit about your current diet? Are you vegetarian? Do you eat whole grains? What country do you live in? Your name, Ng, suggests your might be from the East? maybe Vietnam?

Do you eat turmeric?

Warmly,
Diane

On Jul 10, 2012, at 7:28 PM, Ng wrote:

Hi Everyone,

 

I have PLD & PKD, for the past few months my liver has enlarged. This caused problem when I do yoga, it worry me.

Just wonder is Yoga helps the disease ? I have read some of the post on proper diet, can someone help to enlighten me how

can I monitor what food is suitable for me and what's not.

 

Hope to hear some advice.

 

Thank you.

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[Diane Smith]

I really enjoy yoga. I do the Iyengar method complete with pillows, blankets, props, pulleys to help me relax in the different positions. Here are a few twists that many of us have found helpful for relieving pain and dissension.

http://www.polycysticliverdisease.com/pdf/pain.pdf

Warmly,
Diane

[Paola Viladoms]

Dear Ng,

I love yoga, the method I practice is Naam Yoga, the breathing and the different exercises we do to relax help me a lot with dealing with the discomfort. Thanks to Diane I am following the alkaline diet and has been helpful controlling the growth of my cysts and the pain.

Warmly,

Paola

Sent from my iPhone

[Diane Smith]

Dear Paola,

What is Naam Yoga?

Warmly,
Diane

[Paola Viladoms]

Dear Diane:

Naam yoga is quite the inverse of other kinds of yoga. We use the power of the word ( naam means "word") and it has a lot of healing powers. It is a self healing practice that removes stress and restores the flow of energy, it has movements and chanting mantras, we also use a lot of "mudras" (movements with the hands). This results in deep relaxation and cellular invigoration.

In other words the use of movement, breath and sound therapy, one achieves optimal health and well being.

I hope I explain it correctly.

Warmly,

Paola

Sent from my iPhone

[smith...@mac.com]

This sounds very interesting. I hope it will continues to lead your toward health. Is it like tai-chi in anyway? I often see early morning exercisers in San Francisco and Malls doing Tai-Chi.

Warmly,
Diane

[Paola Viladoms]

Diane,

I am not sure about tai chi being the same as naam yoga because I have  not take a tai chi class even though I would love to. This kind of yoga is very calm and peaceful. We chant and meditate a lot. For me with this condition is perfect, I used to play tennis daily and now that I can not do it anymore having my yoga class is perfect. The web page is www.naamyoga.com. 

Warmly,

Paola.

Sent from my iPad

[smith...@mac.com]

Thanks for the link Paola.

~Diane

[Ng]

Dear Diane,

 

I'm from Malaysia, am not vegetarian. My normal diet will be bread, oat, rice, meat and vegestable. As for turmeric, hardly consume.

My liver has enlarged since last December, it made me uncomfortable and I really look like I'm pregnant. Thanks God that I found this support group, I really need help in term of advice, is there anything that I can do or eat that I can reduce the size. Do I need to change my diet to Alkaline Protein Diet ?

I also have PKD. Four (including myself) out of six sibling have PKD. I have one brother and one sister are in dialysis now, this made me really worry.

 

Would really appreciate if anyone can give me some advice.

 

Thanks in advance.

 

Regards,

Ng

On Wednesday, 11 July 2012 13:44:46 UTC+8, Diane Smith wrote:

Dear Ng,

Welcome to this PLD support group. Can you tell me a bit about your current diet? Are you vegetarian? Do you eat whole grains? What country do you live in? Your name, Ng, suggests your might be from the East? maybe Vietnam?

Do you eat turmeric?

Warmly,
Diane

On Jul 10, 2012, at 7:28 PM, Ng wrote:

Hi Everyone,

 

I have PLD & PKD, for the past few months my liver has enlarged. This caused problem when I do yoga, it worry me.

Just wonder is Yoga helps the disease ? I have read some of the post on proper diet, can someone help to enlighten me how

can I monitor what food is suitable for me and what's not.

 

Hope to hear some advice.

 

Thank you.

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[smith...@mac.com]

Thank you for the questions from everyone on alkalinity, liver cysts. This really stimulates me to search the possibilities of why this might work for us.

Thank you so much Ng for your questions. I love visiting Malaysia, 

Apa Kabar?

There is a newspaper article that I often quote:

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

Saving Failing Kidneys.

In this article it talks about  most citizens of Malaysia having few alternatives to save their failing kidneys and according to the article dietary changes is good place to start. Those who can make the switch to vegetarian proteins have an easier time of it.

I too have both kidney and liver cysts. This is the inherited genetic disease called ADPKD, autosomal dominant polycystic kidney disease. My main symptoms too have come from liver. My kidneys have not failed. I have been on this diet for about 40 years (or a similar form of this diet). I have found that as my liver improved, my kidneys followed along for the ride until now at 65 I have improved kidney functioning as I age and improved liver functioning. Both my kidney cysts and my liver cysts have not enlarged in 15 years. 

Until we have clinical trials with liver cysts and alkalinity we do not KNOW that alkalinity is for sure the reason for this improvement. We have our collective experiences to draw upon that say to us alkalinity is the reason for this improvement in our liver cystic disease. However there can be many reasons for alkalinity improving cystic liver symptoms: 

ALKALINITY 

1. The liver is the main organ of the body that detoxifies, metabolizes all that we ingest; all that we are exposed to; all that we breathe in. The liver's job is the first catch all point for these waste products, for these by products. The liver changes it to a water-y compound to be excreted by the kidneys. By remaining alkaline we can help lessen the workload of the liver.

2. Meats, dairy, cheeses, cow milk, goat milk, caribou milk and cheeses, yogurts made from animal milks all contain hormones. Hormones make liver cysts grow. This is known thanks to the Italians with an electron microscope who looked at the cell walls of liver cysts and found them to have hormone receptors. Avoiding all animal proteins will lessen cyst grow. By lessening cyst growth we lessen symptoms. Women have a greater chance of getting severe liver cysts due to female hormone. Pregnancy and birth control pills and hormones is thought to be a factor. Limiting or avoiding all types of hormones is beneficial for diminishing liver cyst symptoms.

3. Candidiasis or yeast or an overgrowth of yeast so the internal bacteria of the body becomes  unbalanced seems to go along with cystic liver enlargement. A treatment for candidiasis is potassium citrate or alkalinity.  Urologists know that yeast cannot grow, is unable to grow in an alkaline environment so the body bacteria remain in balance through alkalinity. One symptom that a yeast infection exists within the body is a strong desire to eat sweets, to eat sugar, to eat pastries, to eat baked goods. The yeast requires sugar, concentrated sugars to survive. Yeast will demand more and more sugar to survive. The end product of yeast utilizing sugars is alcohol waste. It is for this reason that I avoid concentrated sugars, yeast, alcohol, vinegars, and alcohol ferments.

4. It is known that liver cysts have the two-hit mechanism in play that increases liver cyst formation. The two-hit mechanism is that many may inherit liver cystic organ disease but it is the breakage of DNA, the mutation of DNA that can lead to an increase in symptoms. Anything we can do to limit our exposure to herbicides, pesticides, chemicals, and carcinogenic agents will help maintain the integrity of our DNA. By maintaining the integrity of DNA we can minimize our liver cysts. Eating more raw fruits and vegetables, turmeric, broccoli sprouts (or DIMs), milk thistle, artichoke, saffron, etc. all help maintain DNA integrity. 

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

Helpful liver foods.

5. The PLD Diet or eliminating these items helps diminish liver symptoms:

Avoid certain foods:
ale

alcohol

beer
chocolate
coffee
concentrated sugars
flaxseed
fructose
nightshade: tomatoes, potatoes, eggplant, peppers
oily fish
sesame
soy
starfruit
sugar
tea
wheat
yeast

Avoid chemicals: 
alcohol
ammonia
bleach
dry cleaned clothing

hair chemicals

nail chemicals


Avoid endocrine disruptors:
estrogen
estrogen disruptors
growth hormones
hormones
parabens
perfumes
phthalates
xenoestrogens

Ng I hope you and your family find some relief. Are you in Kota Kina Baulu?

Warmly,
Diane

 

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[Ng]

Hi Diane,

 

Khabar baik (mean I am fine) :).

 

Thanks for the advise and really nice to know you.

I'm from Kuala Lumpur not Kota Kinabalu. I been to Kota Kinabalu, I hiked Mount Kota Kinabalu  last year July. It is a very quiet and peaceful town, I like it there. Have you been to Kota Kinabalu or Kuala Lumpur ?

 

Diane, would you mind to share more on your diet, like what/how you eat for your three meal (breakfast, lunch and dinner). As yeast is in so many type of food, such as bread, cake, pizza & etc. Please share yr meal plan. I'm planning to purchase one high speed blender to blend fruit and

 

What about turmeric ? How it will help in this desease ? And how you consume it ?

 

Hope you do not mind i ask so many questions.

 

Thanks in advance.

[Diane Smith]

Dear Ng,

I enjoy sharing things about the diet. I never mind answering diet related questions. I spent 5 years traveling throughout Southeast Asia in the 70's. I returned in the 90's and have been to Kota Kinabalu and Kuala Lumpur. I enjoy Malaysia very much.

TURMERIC

I used to live on the mainland USA and I would take turmeric as a capsule. I took three three times a day. It stopped my liver pain in its tracks. I am not sure if it decreased bloating and size of my liver. I took it in capsule form just before my liver resection. Now I live in Hawaii and turmeric root is readily available at the open air markets here. I slice a coin's worth of turmeric root, take the skin off, chop it finely and add it to brown rice or vegetables or curries.

YEASTED BAKED GOODS

I stay away from wheat, and I avoid cake, pizza, rolls.  i enjoy non yeasted spelt bread.  Oftentimes I bake this myself. I realize it is very hot in Malaysia and bread is not a common thing to eat with a meal. Flat breads can easily be baked by hand if you have the inclination. Perhaps spelt is not a common flour? You can use buckwheat or brown or red rice or channa flour or bean flour or something other than wheat. Try using sea salt instead of table salt. I don't know if you eat Masala Dosas, a traditional Indian Dish?

http://www.pkdrecipes.com/?p=993

or Spelt Tortillas (these can be made with buckwheat, brown/red rice flour, or bean flour)

http://www.pkdrecipes.com/?p=972

Sprouted spelt chapattis (also can use sprouted dahl or brown rice)

http://www.pkdrecipes.com/?p=950

Rye Crisps

http://www.pkdrecipes.com/?p=908

and many more bread recipes. Just click on the sliding door for breads.

http://www.pkdrecipes.com

Drinks are here

http://www.pkdrecipes.com/?cat=8

One favorite is Mango Lassi. I use almond yogurt.

http://www.pkdrecipes.com/?p=2973

One could substitute rice yogurt

MENU

Menus are located here:

http://www.pkdrecipes.com/?p=2909

and here

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

and

http://www.pkdiet.com/pdf/lists/menuPLD.pdf

WHAT I ATE

solé

small fresh squeezed orange juice

BREAKFAST

This morning I had spelt waffle with Llikoi syrup (passion fruit Coulis)

Caro (roasted grain beverage) In Malaysia you can make roasted brown rice beverage

Sliced melon

SNACK

Cut up pineapple

cup of chamomile tea

LUNCH

garbanzo bean soup with cut up onion, garlic, carrot

small romaine lettuce salad with local cucumbers

Buca di Beppo Salad Dressing

http://www.pkdrecipes.com/?p=1766

Here are more salad recipes

http://www.pkdrecipes.com/?cat=5

SNACK

Apple bananas

DINNER

Kahuku corn roasted

Purslane sautéed greens

Okinawan sweet potatoes slow roasted

SNACK

chamomile tea

Warmly,
Diane

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[Ng]

Dear Paola,

 

Thanks for the info, may I know do you feel discomfort when you do the twisting pose. I felt discomfort, will it harm the liver ?

 

Regards,

Ng

On Wednesday, 11 July 2012 15:54:19 UTC+8, Paola Viladoms wrote:

Dear Ng,

I love yoga, the method I practice is Naam Yoga, the breathing and the different exercises we do to relax help me a lot with dealing with the discomfort. Thanks to Diane I am following the alkaline diet and has been helpful controlling the growth of my cysts and the pain.

Warmly,

Paola

Sent from my iPhone

On Jul 11, 2012, at 12:28 AM, Ng <yokef...@gmail.com> wrote:

Hi Everyone,

 

I have PLD & PKD, for the past few months my liver has enlarged. This caused problem when I do yoga, it worry me.

Just wonder is Yoga helps the disease ? I have read some of the post on proper diet, can someone help to enlighten me how

can I monitor what food is suitable for me and what's not.

 

Hope to hear some advice.

 

Thank you.

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[Paola Viladoms]

Dear Ng,

If there is an exercise that makes me feel discomfort I don't do it, I've learn to listen to my body and specially my liver. Also one of the doctors that I saw a few months ago told me to be careful with certain movements, twisting and pressure in the liver area.

Regards,

Paola

Sent from my iPhone

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[Diane]

Dear Ng,

Do NOT do anything that increases symptoms. This is why I personally enjoy Iyengar Yoga or Restorative Yoga. Pillows, props, pulleys, ropes, blankets are all used to assist the body to relax in certain positions. If you feel pain stop the pose. Do not do it.

Warmly,

Diane

[Diane Smith]

Dear Ng,

I have written a bit more on the yeast page for PLD.

http://www.ncbi.nlm.nih.gov/pubmed/21586647

Candida albicans autoinduces hyphal morphogenesis by raising extracellular pH.

This article explains that if we have candida, a yeast overgrowth, the yeast actually produces a lowering of the overall systemic pH. Eating sugars makes our body acidic. To maintain health it is important to have a slight leaning toward the alkaline.

Before reading this article I was not so clear as to why concentrated sugars were so harmful to me in particular with severe PLD. Now I understand this a bit more. When my liver was so enlarged I craved sugar; my body demanded I eat sugary sweet desserts. If I can get myself alkaline like with foods, juices, or some over the counter potassium citrate (checked with my doc) I can easily resist sugar. Candida overgrowth produces acidity. Alkalinity is beneficial for diminishing PLD symptoms.

I am now set to avoid:

yeast

sugars

alcohols

ferments

 

because I have come to realize this will diminish, this will return my flora to normal.

It was funny, odd, following my liver resection I wanted no sweets. I only wanted sour crisp fresh things.  Amazing.

~Diane

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[mde...@aol.com]

I have been told to avoid contact sports and no weights or bending also.

 

Mark

[Diane]

Dear Ng

I am baking a batch of non-yeasted spelt walnut bread. It takes me about 4 days to develop the non-yeast or the starter for this bread.

~Diane

[diane]

Hello and Welcome

Certain yoga poses seem to help some with PLD bloating. See some non-medication pain relief suggestions:

http://www.pkdiet.com/pdf/lists/pain.pdf

~Diane

On Apr 17, 2013, at 7:54 AM, pkin...@buffalo.edu wrote:

On Wednesday, July 11, 2012 1:28:11 AM UTC-4, Ng wrote:

Hi Everyone,

 

I have PLD & PKD, for the past few months my liver has enlarged. This caused problem when I do yoga, it worry me.

Just wonder is Yoga helps the disease ? I have read some of the post on proper diet, can someone help to enlighten me how

can I monitor what food is suitable for me and what's not.

 

Hope to hear some advice.

 

Thank you.

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[diane]

Hello Patti

I have emailed you and will also answer on this forum. We are a very kind group here easily sharing our experiences.

Warmly,
Diane