PKD DIET

Itching Discussion

The following is from a discussion about dry itchy skin.

Question

I have PKD, inherited from my mother. She is on dialysis, has been for approximately 18 months most of which she has sailed through with no problems. Recently she has started to get itchy skin, so itchy she cannot stop scratching and wants to tear it off - it's really bad and it's making her very stressed. I know this is a fairly common occurrence in dialysis patients, it's a condition called Pruritus (uremic frost sometimes develops). Research from the US claims that gamma-linolenic acid (GLA-a part of an essential fatty acid) can help relieve itching. The highest concentration of GLA can be found in borage oil, black currant oil, hemp oil and evening primrose oil. It should be applied externally on the affected areas of skin. Does anybody have any more insight, experience or advise about all of this. I can buy all of these oils in the UK but I wonder perhaps has anyone tried this or something else that works?

Answer

I had a skin problem when I was on dialysis, after dialysis they gave me 2 benadryl and I use Gold Bond medicated lotion, it has stuff in it for itching and a moisturizer,I took the small pink and white tablets.

Answer

Careful with benadryl. Some individuals are allergic to this. For poison ivy type of itching, calamine lotion without Benadryl is recommended over caladryl lotion that contains Benadryl. A better anti itch medication (it makes you sleepy) is vistaril, an anti-histamine. I do not think uremic frost has an allergic component to it. It is caused by the body trying to eliminate toxins that either the liver or kidney are unable to do.

Answer

Read about the effects of aromatherapy on pruritus in patients undergoing hemodialysis.

Question

How can I keep my skin from getting dry?

Answer

Dry air can cause your skin to become dry and itchy. In your home, use a humidifier to put moisture in the air during the winter and in dry weather. Some soaps can cause your skin to feel itchy. It's good to use a soap that is unscented and hypoallergenic. This kind of soap does not contain dyes or perfumes that can irritate your skin. In addition, you can use a mild, unscented, hypoallergenic laundry detergent, avoid fabric softeners, and try using an extra rinse cycle to keep your clothes and bed sheets from making your skin itch. Choose clothing made of soft fabrics like cotton or silk. Avoid wearing clothing made of rough wool, which can irritate your skin and make it itch.

Answer

Soap is very drying to the skin. I avoid the use of soap altogether. Natural clothing is wonderful. Silks and cottons feel nice and soft next to the skin. Wash clothing a few times without any soap at all and in hot water if they are cottons and shrinkage is not a problem. Bentonite clay or Moroccan Rhassoul clay might be something to try. I found it useful for relieving itching. Mix the clay with olive oil and a tablespoon of raw tupelo honey, then rinse. Slice a lemon in half; cover with cheese cloth or muslin. Rub the juice from half a lemon over the skin; rinse again; then apply more olive oil. If you want to diminish the residual oil rub baking soda over the body and rinse with additional water.

Question

When I was in primary school we were asked by our art teacher on occasion to bring clay to school for the art class to make various figures. I even remember a small house were a potter lived and made pottery of all shapes and sizes. I think he stopped his business in the early 80's. Not very far from were I lived there was a place were the clay was quarried and a brick making factory was in full swing. The factory is gone but the clay remains. I'll have to investigate this clay further when I go home.

Answer

I used tea tree oil on my father and he said it worked but it has a very strong odor.

Question

Tea tree oil should not be used with PLD. It might cause liver cyst enlargement.

Mum has tried some moisturizing creams but none has helped. She lives in Bosnia doesn't have access to the many options available to me in London. I know what I need to do, combine the bentonite clay paste with borage lotion I'll make, and perhaps hemp oil, something will work. I'm a big fan of aromatherapy and I have made potions and lotions for myself only for a few minor things, one of them being eczema like patch on my leg. I used pure aloe vera with marigold and Roman camomile oils and it worked rather well. Even so, the itching returns a couple of times a year. I suspect it is PKD related.

Answer

I made a dandelion cream for my husband that worked beautifully to treat his rash.(not PKD related). Bentonite clay might be easier to find in Bosnia than you might think. It is used in construction works. Its other names are green clay,bentonite clay, Pascal's clay and more. The one I prefer for the face is called Aztec clay and it is a type of Bentonite clay that actually foams up a bit when mixed with apple cider vinegar. The vinegar mixes easily with the dry clay powder giving a consistency of a thick cream. It really leaves the skin very soft. What is the traditional oil used in Bosnia? I have come to learn that traditional foods are sometimes more beneficial in the area we are living. For instance in the Philippines we used coconut oil for cooking, for our bodies, and for sunbathing. Then it was thought that other oils were better for us. Now we have come full circle and cold pressed coconut oil is now considered a very useful oil. I think if one is of Italian decent than olive oil might be a good choice. Or coconut oil beneficial for island peoples. I have also heard that peanut oil while not useful for eating is very good for the skin. It is recommended by dermatologists. Throughout Germany peanut oil baths are useful for itching skin complaints. There is also a cream containing urea that really smoothes a very dry skin condition known as icthiosis or elephant skin. I would think the bentonite clay applied externally as a paste might help. This is what I used when my skin itched for about 6 months following my liver resection.

Answer

How about a local clay? Clay is considered one of Bosnia's key natural resources. Spas use the French green clays. I think most of the earth’s marbles would have healing qualities. (Source)

Question

As far as oils go, in Bosnia the traditional cuisine and available ingredients are very much influenced by centuries of Ottoman rule but in more modern times a Mediterranean influence can be found, so mostly sunflower oil, some corn and increasingly olive oil is being used. Anything else is considered more exotic. Don't know if Bentonite clay is available but I will certainly try to find it. In the meantime, I'll just take some over when I go.

Answer

Mackenzie Walser M.D. writes in his book Coping with Kidney Disease that itchy skin occurs when the body is too acidic. I just prepared Aztec clay according to the package directions. This is from the back of the container of Aztec Bentonite Clay.
Description: Clays have been used for centuries to beautify & refresh when used as a facial mask. World's Most Powerful Facial Deep Pore Cleansing. Aztec healing bentonite clay is from Death Valley, California where it is sun-dried for up to six months in temperatures that sometimes reach 134 degrees F. Historically used by American Indians for purification and healing. Clays have been used for centuries to beautify and refresh when used as a facial mask. Cleopatra used clay from the Nile river and the Arabian desert over 1,800 years ago as part of her beauty ritual. German and Roman spas have been using clay packs and treatments in the spas they built 4,000 years ago. Many of these spas still exist and use clay even today: Eugenie-les-Bains in France near the Pyrenees mountains, Baden-Baden in Germany, Calistoga Spa Hot Springs California, USA.

Answer

I remember reading about a lake in Italy filled with fish. Sufferers with psoriasis would jump into the waters and the fish would gently nibble away at the psoriasis patches leaving their skin feeling soft and wonderful.
Piney the Elder devoted an entire chapter of his Natural History to the many uses of clay, pimples, blackheads and skin tightening. Many famous naturopaths, such as Kuhn, Just and Kneipp have contributed to the revival of the uses of clay through their natural treatments. The use of clay with apple cider vinegar can be dated back to the Southern French Priest of the 16th Century Kneipp and his natural treatments using clay packs and poultices.
Throughout history the use of clay, specifically green clay or bentonite, is well documented. To learn more about clay look for Our Earth Our Cure by Raymond Dexteit, translated by Michel Abehsera. (currently out of print. Maybe a library might have a copy).

Answer

Instructions written on the back of Aztec Healing Clay: Mix Aztec Secret Indian Healing Clay with equal parts of apple cider vinegar (preferably raw) or water. It is best to use a glass, pottery, or wooden bowl. Stir the mixture until it is a smooth paste add more clay or liquid as needed. Apply a ⅛ inch to ½ inch thick layer of clay to the face or other areas and let it dry. Drying times vary, but times are generally 5 minutes for delicate skin and 15-20 minutes for normal skin. You will feel a pulling and tightening sensation, deep pore cleansing.

Question

Hey, my dad makes cider vinegar! I used to make it with him all by hand, mince the apples, leave for a few weeks and then press the juice, hard work it was but very satisfying and worthwhile. And it almost time for it too...

Answer

I talked to a friend at the gym tonight on hemodialysis about Itching. He thought right away that it could be from not following the renal diet correctly. He suggested an excess of phosphorous would cause such itching. He has seen patients with raw scabs were they have itched so badly. He asks if your Mother is prescribed a Phosphorous binder such as Rengel? Does she avoid dairy products, dark soda, packaged meats (a bag of frozen chicken breasts, packaged/ canned lunch meats), and canned biscuits which are notorious for high phosphorous levels?

Question

I haven't seen this one before. I'll tell her about this, don't think she is taking anything like a phosphorous binder. For two years pre dialysis she was on a very restrictive diet and lost a lot of weight, so now she does indulge occasionally. She loves sour cream and cottage cheese, her favorites with a piece of fresh bread. If she had a choice I think she would happily live off it! She has developed a very sweet tooth in the last couple of years. But, for the most part she does eat as healthy as possible. All her food is fresh (meat and fish) and my dad grows his own vegetables organically (well, he never grew them in any other way). I'll suggest she tries to give up certain things and then slowly reintroduce them back into her diet to try and see if she can pinpoint a food that might be causing the itchy flares.

Answer

Phosphate is almost, well is, impossible to eliminate from a diet and live. However Rengel really works well, did for me anyhow! Processed foods really are best avoided in favor of whole organic if possible only food, and organic if possible only, light colored meats, chicken and fish etc. Organic eliminates, to some large degree contamination by chemicals during growing or processing. Not for other reasons, although there are others!
Freezing meat for a minimum of four days is good as the frozen meat becomes void of much bacteria it may have (gets killed in the chill)! If your mum was anything like mine, a mature naughty girl who hid the salted rashers of bacon she was told not to have, and had long conversation trying to justify sneaking it into a sandwich with tomato source to boot, just once that week. You have a task on your hands. Mind you, once she got into whole foods and lighter meats she was very good at it. I did have to watch her go from a large woman to a thin, which was sad for me!

Answer

For myself on dialysis, I simply ate whatever yet always made sure the quantities and repeats were small and well apart. I ate more logistically than dietary, although I also naturally eat whole food and much fish and chicken. Even now I grow most of my own vegetables and in UK we had a cheap organic grocers and meat supply. Yet I must state i am not an organic geek. I do eat just running around in fresh air stuff and fish from the sea etc. I did take note of phosphorus and potassium and did my best to check them all the time!

Answer

Following my liver resection I have always had a patch of dry skin over the area of my biggest liver cyst. I had it checked by a dermatologist who wanted to punch biopsy it. She thought it was nummular eczema. I refused because it didn't really bother me unless the weather turned very cold, then it would itch like crazy. It is very near my surgical scar so I tried a cream for stretch marks on my surgical scar and the dry patch. It is now totally gone for the first time in ten years.

Answer

Luckily, living in Bosnia my mum has never been exposed to the delights of a "western" diet so no bacon, no processed foods, no artificial anything. If I could forbid one food item in her house it would be chicken - she has a particular liking for a certain producer and it's not organic, yikes...I think I need to be more graphic in my description of how bad these chickens really are!
But naughty she can be sometimes...loves chocolate.

Answer

I have always thought that which is grown and produced locally or homegrown is best. Maybe for your Mum, might benefit from some local clay with local apple cider vinegar mixed in. A great suggestion given to get her phosphorus checked. 999 phosphorus foods.

Question

I've just spoken to mum, her latest phosphorous test (last month) is just over the high limit so she will speak to her doctor to discuss if binders would be suitable for her. I just used Aztec clay the way it said to use it on the package. When Bentonite clay is mixed one to one with equal parts of apple cider vinegar it foams up and sizzles and blends to make a really wonderful paste that is easy to spread with a cream like consistency. I add additional olive oil and a teaspoon of tupelo honey. Allow it to remain on for up to 15 minutes. I tried preparing Aztec clay with only the apple cider vinegar and once rinsed, the surface of my skin was smooth but a little dry. I found the addition of an oil like olive oil makes the surface of the skin less dry. Some health food stores will give you a sample of Aztec clay to try for free.

Answer

Glad to hear your Mother is going to check on this. Just a reminder that it's not only processed foods that are high in Phosphorous. Most foods contain some.
The following foods are usually HIGH in Phosphorous:
--many fish and sea foods
--organ meats, turkey and eggs
--dairy products such as milk, cheese, pudding, yogurt and ice cream
--dried beans and peas such as kidney beans, split peas and lentils
--nuts and peanut butter
--chocolate, kelp and yeast
--brown rice and whole grain breads
--beverages such as cocoa, beer and cola soft drinks

Itchy Skin & Anemia

If you have kidney cysts this 2016 medical article has found an association between itching, eosinophilia and anemia. Get your anemia checked and have it corrected. With liver cysts, itching is thought to be related to elevated bilirubin. With itching, in addition to bilirubin, ask for a hemoglobin and hematocrit to check for any anemia.

We are  sharing our experiences with PKD/PLD Diet, an adjunct diet envisioning it complementing a physician's prescribed medical therapy. Consider testing this with your doctor's prior knowledge, who can  adjust it according to your own uniqueness by adding it to your current  treatment.

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