Tired

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Diane Smith

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Jun 30, 2022, 7:16:08 PM6/30/22
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I am 75 and tired all the time with PKD and PLD I am woobly   My doctors do not know what causes it. They have run some pretty sofisticated tests on me. Anyone else tired.


Sent from my awesomes Blue iPhone 13

~Diane


On Jun 30, 2022, at 1:08 PM, Diane Smith <smith...@mac.com> wrote:

At Costco they have Hannah 32 oz Tzatzki yogurt !!!!


Sent from my awesome Blue iPhone 13

~Diane


On Jun 27, 2022, at 1:09 PM, Wayne Harrison <gritty...@gmail.com> wrote:

Thanks, Diane. This is informative. Does this also apply to the fermented foods/Yogurt question? I'm a little confused. Sorry!
Wayne

On Saturday, June 25, 2022 at 11:42:36 AM UTC-7 smith...@mac.com wrote:
Dear Wayne 

My husband, no PKD, had a colonoscopy for bleeding. He now uses the low FODMAP diet. He now uses this for his diet and he is amazed how well it works for him.

I have tried some of his diet for me. I too am amazed. 

No onions no garlic no milk chocolate gluten free flour 

The Monash university in Australia has written a low food map food app. If you have a non iPhone try looking for a free app that is low FODMAP 


Sent from my awesome Blue iPhone 13

~Diane


On Jun 24, 2022, at 8:42 AM, Wayne Harrison <gritty...@gmail.com> wrote:

Wow--this sounds delicious! Thanks, Michael!


On Friday, June 24, 2022 at 10:51:45 AM UTC-7 Michael wrote:
Tzatziki. Cucumber and plain yoghurt with either a bit of cyan pepper or paprika, which is my preference and a twist of fresh black pepper, you can also put in minced garlic if you like. There are variations you can look up!

That's my contribution.

I am starting to use Chai seeds daily and summer cucumbers. Both superfoods.

All the best Michael 



Cavalier de l'iPad:
 “ Every moment happens twice: Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

On 24 Jun 2022, at 7:13 pm, Wayne Harrison <gritty...@gmail.com> wrote:

Hi everyone. I've been having lots of digestive issues lately that I think are related to stress and a very high fiber diet. I've read great things about bringing in fermented foods daily. I'm thinking about bringing no sugar yogurt into my diet a few times a week, along with low salt Kimchi (if anyone has any good recipes, I'd be grateful to use one for homemade.)
Please let me know your thoughts and experiences with fermented foods and PKD. 
Thanks! Hope you're all enjoying the summer!

Wayne

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Dr. K

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Jun 30, 2022, 8:16:51 PM6/30/22
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Hello Diane

I am tired as well but only 65.  I have a lot of uric acid build up in my joints that make my walking painful, too.  my sleep is only in 3 hour intervals, as I awake at least two or three times during the night and am tired all day.  I have been given double doses of potassium and my iron level is monitored, as i do get anemic.

not sure what to do about the lack of sleep and constantly being tired.
kind regards
Kenneth  

Diane Smith

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Jun 30, 2022, 10:05:26 PM6/30/22
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Dr K
I am so sorry that your uric acid is so high especially in your joints. How awful for you !


Sent from my awesome Blue iPhone 13

~Diane


On Jun 30, 2022, at 2:16 PM, 'Dr. K' via PKD <pkd...@googlegroups.com> wrote:



Diane Smith

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Jun 30, 2022, 10:20:19 PM6/30/22
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I have tried staying away from spinach  MY uric acid was so high in my joints that the doctor said he could put a needle in my joints and get the uric acid crystals out.  I said no, I would just stop eating spinach

I have also stopped almond milk and am switching to oat milk
 I hope this too makes a difference   It seems the older we get the more these little things make a difference. 

I have always avoided nightshade plants for this very reason. 

Sent from my awesome Blue iPhone 13

~Diane


On Jun 30, 2022, at 4:05 PM, Diane Smith <smith...@mac.com> wrote:

Dr K

anthony...@fastmail.co.uk

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Jul 1, 2022, 2:17:51 AM7/1/22
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Earwig. Cherries and cherry juice might help lower your uric acid load in the joints!

Magnesium citrate is taken an hour before bed and often helps sleep by nursing the nerves which keep one otherwise awake!

Of course, you need to check with your medical people. Potassium if you have sleep problems is best taken in the morning so it disputes by the evening.

All the best Michael 

Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

anthony...@fastmail.co.uk

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Jul 1, 2022, 2:32:47 AM7/1/22
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PS: amimia is tricky. I only found that injected iron worked for me the Epoetin to produce more red cells. 

All the best Michael 

Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

Dr. K

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Jul 1, 2022, 7:26:37 AM7/1/22
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i DO NOT eat spinach and do not drink milk. i follow your PKD diet, for if i did not, i know i would be much worse!  My nephrologist said i am a walking miracle (when i can walk) as at my age and compared to all his other patients of my age, I should have been on dialysis five years ago, but my values remain stable.  Yes very tiny increases mainly due to age, but still not bad enough to put me on a transplant list or dialysis.  He simply tells me ok we will see you in three months, and keep doing what you are doing.  

I tell him its all YOUR DIET Recommendations, clear water, and exercise as what else can I attribute the fact my decline is so slow?   Only thing the exercise, with my sore feet, has been difficult these past days.

Dr. K

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Jul 1, 2022, 7:31:26 AM7/1/22
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YES I do all.  This is Cherry season here in Germany and I have FRESH Cherries daily.  I take Magnesium Citrate EVERY NIGHT.  I need too, as often I get very painful leg cramps that awake me from my sleep, the water, Magnesium in the evening have helped minimize these horrible leg cramps.  I  do take the Potassium every morning!  The next thing is to take some meds for the Uric Acid, but my Doc cautioned me that the meds in the beginning will raise the acid level even higher, before they will reduce the level, so he said if water and diet will not slow the occurrence, then that would be next.  I do not want more meds.

Dr. K

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Jul 1, 2022, 7:32:32 AM7/1/22
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I am on an Iron tab, and that is more than enough to stabilize my iron level.

Diane Smith

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Jul 1, 2022, 1:21:59 PM7/1/22
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How wonderful to eat cherries in Germany 
For my leg cramps I used to take vitaminE plus a little magnesium. I used to take it prophalactically. It worked!

Eryhoipoiten


Sent from my awesome Blue iPhone 13

~Diane


On Jul 1, 2022, at 1:32 AM, 'Dr. K' via PKD <pkd...@googlegroups.com> wrote:



Diane Smith

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Jul 1, 2022, 1:26:21 PM7/1/22
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Erythropoietin is wonderful for anemia. It used to give me so much energy but the shots Your anemia must be 10 or below at least. In the USA


Sent from my awesome Blue iPhone 13

~Diane


On Jul 1, 2022, at 7:22 AM, Diane Smith <smith...@mac.com> wrote:

How wonderful to eat cherries in Germany 

Diane Smith

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Jul 1, 2022, 1:29:29 PM7/1/22
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How wonderful the diet has helped. It helps more as we age!!!


Sent from my awesome Blue iPhone 13

~Diane


On Jul 1, 2022, at 7:26 AM, 'Diane Smith' via PKD <pkd...@googlegroups.com> wrote:

Erythropoietin is wonderful for anemia. It used to give me so much energy but the shots Your anemia must be 10 or below at least. In the USA

anthony...@fastmail.co.uk

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Jul 1, 2022, 3:28:27 PM7/1/22
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I new it as Epoetin alfa here in Europe!

All the best Michael 

Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

On 1 Jul 2022, at 7:21 pm, 'Diane Smith' via PKD <pkd...@googlegroups.com> wrote:

Eryhoipoiten

Diane Smith

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Jul 1, 2022, 5:12:22 PM7/1/22
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We call it “EPO” for short.


Sent from my awesome Blue iPhone 13

~Diane


On Jul 1, 2022, at 9:28 AM, anthony...@fastmail.co.uk wrote:

I new it as Epoetin alfa here in Europe!
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Cristina Clark

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Jul 2, 2022, 6:40:41 PM7/2/22
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Hello
I was very tired for a while, but after increasing the iron. I feel much better. I am also taking omega 3, B12 two times a week. I am now 11% of kidney f. Still working full time . Might try transplant overseas end of July 
Best Cristina 

Sent from my iPhone

On Jun 30, 2022, at 7:05 PM, 'Diane Smith' via PKD <pkd...@googlegroups.com> wrote:

Dr K

Cristina Clark

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Jul 10, 2022, 11:18:01 AM7/10/22
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Does anyone has a more holistic approach doctor . I feel that the focus is mostly given on get ready for dialysis some day , of course the doctors manage with meds the downhill road. What about stopping what start the cysts in the first place? Losartan and low sugar kind of stop the growing inside me, my belly looks normal. Still we need to fight for cure. Keto and intermittent diet is helping some of us. We need to move forward with more information available to us all. Integrative medicine practitioner( San Francisco area)! I would love to hear more

Sent from my iPhone

On Jul 2, 2022, at 3:40 PM, Cristina Clark <crisc...@gmail.com> wrote:

Hello

anthony...@fastmail.co.uk

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Jul 10, 2022, 12:14:20 PM7/10/22
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Dear Cristina

The PKD diet group here began many years back now, posing that same question or quandary.
Indeed in most ways, the group is a result of that. 
I am very willing to be corrected, yet so far we have only seen improvements in slowing a decline in kidney cysts and the path to kidney failure. The liver has a differing profile and then there is a mix and match. Most respond by reducing the burden of processing some meats and some would say all meat. Not fish and less so chicken.
Yet then we get into the detail of diet where people discover that they are different and no one thing works for all.
I am sixteen years going seventeen kidneys year's transplanted. Five on dialysis and twenty years in decline speeding up towards the last five years.
The process of getting a transplant for ordinary Joe is full of protocols all of which work. They can also be a pain. Yet on the whole they are there to give you a chance at a new kidney should yours eventually fail. 
Doctors, or in our case Nephrologist doctors are bound by this protocol. However, my own was very supportive of my Alkaline diet even if they displayed some scepticism. 
This was the diet that made me more healthy than if I had not paid attention to it. I have no absolute proof, yet I am happy saying it extended my old kidneys by about five years in all. 
I have recently been practising intermittent fasting and the keto diet to lose weight.
My old kidneys weigh approximately, between them, seven kilos as measured a few years back. So yes, I have the appearance of a ‘beer belly’, except it isn't. So any other weight has to come off.
It works very well. I saw in correspondence that Diane had tried the Vegetarian version of it and others were.
Of course, understanding the Keto diet is a lot more than weight loss, or not!

My family has had this for generations and many died. My Aunt and I are the only current survivors. She was transplanted only a few years back.
I say that to point out that all of my dealings medically with it have seen improved vastly, just from my mother period to me. Some people which have PKD never going to fail. The others, slow it down or not. There are no real markers doctors can use.

If you practice the Keto diet I would love to read your correspondence. 

All the best Michael 



Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

Diane Smith

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Jul 10, 2022, 3:54:41 PM7/10/22
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Dear Cristina
I have tried many holistic doctors
Among them this doctor from Arizona and another in Germany. I tried them for a long long while but it found that the holistic doctors could not do the trials that were needed.

So I have gone with a specialist from the Mayo that can perform all the trials. He specializes in PLD and PKD. He got together with Dr Nagorney and they tried the liver resection.

The Mayo doctor has told me I would never need dialysis or transplant.  I believed him and at 75 I am the oldest PKD patient with allele one, the more aggressive form of PKD. 

Dr Grantham found out long ago what fluid was inside cysts. He recommended to never take forskoline. There have been many recommendations what take to slow down cyst growth. Some work some don’t. 

My Mayo doc does not recommend I lose any weight and for this reason doesn't put me in any trials. 

PLD whatever we eat is taken up by the liver and the bad stuff is excreted 
This is in part why some of the oldsters live to be so long. Their bodies have not
Been exposed to toxins in their food for as long.

I was  In the trial for PLD and it  worked!!
The alkaline vegetarian diet just works. Meat contains toxins as well.
Sent from my awesome Blue iPhone 13

~Diane
 
On Jul 10, 2022, at 6:14 AM, anthony...@fastmail.co.uk wrote:

Dear Cristina

Ken Muschelewicz

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Jul 11, 2022, 5:58:50 AM7/11/22
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Hello All,

A few weeks ago i participated in a Webinar on issues with CKD.  Specifically it addressed one of my issues and thats skin itching!  it was a very good discussion on the theory and then challenges we faces as patients who face this condition.  

the main thing to do is make sure you bring up the issue with your nephrologist!  they need to start tracking how prevalent this condition is for their patients.  right now there are not many treatments!  however with more data on patients who suffer from it, more effort will be focused.

personally brought it up with my skin doctor who prescribed me an ointment that i take as needed.  it works great for me!  so there is some relief for something that can be very difficult to endure, especially when trying to sleep.

good luck
Dr Kenneth 

Sent from my iPhone

On 10. Jul 2022, at 21:54, 'Diane Smith' via PKD <pkd...@googlegroups.com> wrote:

Dear Cristina

Ken Muschelewicz

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Jul 11, 2022, 6:40:01 AM7/11/22
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Hello All,

As you all know i scan the literature often and am still in direct contact with the researchers working on treatments and cures for our condition.  Several weeks ago i ran across these Indian Guys who were touting a CURE for CKD!

They have a slick web site where they promote their compelling treatment!  So i thought ok let me investigate their claims!

To begin they state they only use some special herbs, and some Yoga to cure their Clients of CKD!  i found this odd that these guys claim to have cured 1,500,000!!!  over 85 years of treatment!  Then, i thought WOW, if they have been Curing people for more than 85  years, why did i never hear about them?

  Certainly with this kind of success, they must have published their results, or at the least have presented the data at annual nephrologist conferences!  So i brought them to the attention of my team at Emory!  Of course Emory has one of the World Top Research groups on our PKD  condition and they NEVER saw this before!  

They immediately cautioned me that if these guys had a real proven treatment, they would  have No Problem sharing the data with the World, not just through some web site!  

i immediately contacted these guy challenging their results. they replied and Not give me any firm peer reviewed results on their alleged work!  They only got very arrogant and stubborn attacking me and my challenge to their "Snake Oil", treatment plan.  

As i explored it further, they told me to send them all my blood work results from the past year, along with $1200 and they will give me a Three Month Treatment plan of their special Herbs and Daily Yoga actions.  When i presented this to Emory, they said its a very expensive treatment but it falls under an exercise and diet plan not a firm medical plan.  So their advice was since its not been reviewed and these guys were so arrogant once i started my investigation that its Best to avoid them!  Also in all peer reviewed studies there is data on side affects, of course these guys claim 100% natural with No Side affects!  Oh then they came back and said oh some patients reported constipation and others diarrhea!  I found this ti be very odd that they had no firm data! 

Nevertheless, i wanted to caution you all on these Arrogant Stubborn Snake Oil guys!  

Dianne please look at the Herbs they are using and recommending!  Maybe there is something good in them, in combination with the PKD diet? They might simply have Placebo results, who knows?  But $1200 a quarter for a non medically approved treatment from these arrogant guys is a Big Red Flag for me!


👆🏻Here is their link!  Don't be fooled by their photos and bla bla bla, they could not produce any firm data showing cure!  especially when they claim to have Cured 1,500,000!

kind regards
Dr Kenneth 🙂

Wayne Harrison

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Jul 16, 2022, 11:21:24 AM7/16/22
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Hi Michael. I wonder if you and members of this group are also members of the Healing PKD Naturally facebook group. Felix, the founder, recommends a bullet proof keto diet that incorporates meat and low carb veggies. He says they have great results, but have to take with a grain or two of salt since his business is consulting for a fee. But I wondered if anyone has had good results on a typical keto diet that uses meat protein. I'm hesitant to go that route, since I've had luck with the vegan diet, but recently my creatinine raised from 1.14 to 1.22, and I'm not sure if this is normal fluctuation or if I should test the traditional keto bullet proof approach to see if I can bring it back down. Any advice would be greatly welcome. Thanks!

anthony...@fastmail.co.uk

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Jul 16, 2022, 1:07:16 PM7/16/22
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I use this guy: Dr.Berg Dissects a Keto Day of Eating! – Daily Keto Diet Plan & Keto Meals
Yet I used it to lose weight, which worked. from 101 kilos to 90, 7 kilos in about two-three months. Came off faster towards the end of the weight target!

I have heard yet not seen the keto vegetarian version of it. 

I have not used it in connection with PKD.

What I did learn was carbohydrates are quite insidious. Once those are managed and with intermittent fasting the diet I found surprisingly easy to do!

What did you want the diet to do?

All the best Michael 



Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

anthony...@fastmail.co.uk

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Jul 17, 2022, 3:55:45 AM7/17/22
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All the best Michael 

Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀

anthony...@fastmail.co.uk

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Jul 17, 2022, 4:00:11 AM7/17/22
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Just incase the URL did not work:

Reversing polycystic kidney disease

Sonia Fernandez
Kidney illustration

Hereditary and relatively common, polycystic kidney disease (PKD) has long been thought to be progressive and irreversible, condemning its sufferers to a long, slow and often painful decline as fluid filled cysts develop in the kidneys, grow and eventually rob the organs of their function.

Once their kidneys fail, PKD patients often require dialysis several times a week or must undergo a kidney transplant. To make matters worse, a host of other PKD-related conditions and complications add to the patients’ health burden, including high blood pressure, vascular problems and cysts in the liver. And that doesn’t take into account the medical costs and the reduced quality of life.

Progress toward finding a cure has been sluggish, with only one drug proven to slow — but not stop — the progression of PKD.

But now, thanks to research conducted by UC Santa Barbara biochemist Thomas Weimbs, postdoctoral researcher Jacob Torres and their team, a solution may be no farther than the end of your fork. Diet, they discovered, could hold the key to treating PKD.

“It’s surprisingly effective —  much more effective than any drug treatment that we’ve tested,” Weimbs, whose work focuses primarily on the molecular mechanisms underlying polycystic kidney disease and related renal diseases, said of his group’s discovery. Their work appears in the journal Cell Metabolism.

A fast(ing) response

Torres and Weimbs
Postdoctoral researcher and lead author Jacob Torres, left, and biochemist Thomas Weimbs.
Credit: Sonia Fernandez

In previous studies, the research team found that reducing food intake in mouse models slowed the growth of polycystic kidneys; but at the time, they did not know why. In their new paper, the scientists have identified the specific metabolic process responsible for slowing the progress of the disease.

The best part? It’s a process many of us already know well.

“There’s a way of avoiding the development of the cysts through dietary interventions that lead to ketosis,” Weimbs said.

You heard that right: Ketosis, the underlying metabolic state of popular diets such as the ketogenic diet, and, to a lesser extent, time-restricted feeding (a form of intermittent fasting), has been shown in the Weimbs group’s studies to stall and even reverse PKD.

“The cysts appear to be largely glucose-dependent,” Weimbs explained. In people with the predisposition toward PKD, the continuous supply of sugar in the high-carbohydrate, high-sugar diets of modern culture serve to feed the growth and development of the fluid-filled sacs.

“Ketosis is a natural response to fasting,” Weimbs said. “When we fast, our carbohydrate reserves are very quickly used up. In order to not die, our bodies switch over to a different energy source and that comes from our fat reserves.” The fat reserves, he continued, are broken down into fatty acids and ketones which then take the place of glucose in providing energy to the body. The Weimbs team found that the presence of ketones in the blood stream in particular inhibits the growth of the kidney cysts. And with a steady supply, ketones actually acted to reverse the condition in their animal studies.

The problem with typical Western diets is that we almost never go into ketosis: we eat high-carb, high-sugar foods almost continuously throughout the day, securing for ourselves a continuous supply of glucose. In the ketogenic diet, the body’s typical “go-to” source of energy — glucose — is taken away as ketogenic dieters focus on non-carbohydrate foods, eventually forcing their bodies to mimic the fasting response. Time-restricted feeders, meanwhile, reach that state by limiting the window of time they eat to a small part of the day, leaving the remaining 16-20 hours of their day for the body to use up the carbs and sugars and switch over into ketosis.

Ketones are actually a class of three different naturally occurring molecules, said Weimbs. Of particular interest and effectiveness is one called BHB (beta hydroxybutyrate), which has been shown “to affect numerous signaling pathways that are implicated in PKD,” according to the study. The team found that by just feeding that ketone to rats with PKD, they were able to create the beneficial effects of ketosis, no special diet restriction needed.

“Which makes this really amazing,” Weimbs said. “On top of a normal high-carb diet, which they can eat all day long, if we give them BHB, they’re fine.” After five weeks of treatment with BHB in the drinking water, rat polycystic kidneys were “nearly indistinguishable” from normal ones.

In fact the researchers were so surprised by their result they thought they had made a mistake. “I was so surprised by the effect of BHB treatment that I had to go and double-check all the genotypes of the animals to make sure they had PKD to start with,” said Torres, the paper’s lead author. “The effect was really unlike anything I had encountered before.

“The impact of this research has huge implications on the field of PKD,” Torres continued. It provides a framework, he said, for understanding the pathology of PKD from a metabolic viewpoint and adds another disease to the list that a ketogenic diet can be used to treat. “Our discovery also has implications for understanding cellular metabolism at a fundamental level as we learn more about what has gone wrong in our disease models. I am really looking forward to the future of research in this field as we explore this new space and uncover even more about what is really going on in PKD.”

An assist with ketosis

It’s quite possible to reach ketosis just by avoiding carbs or by fasting for a period of time. “It’s a very natural way to have your own body produce BHB,” Weimbs said. “So something like a time-restricted diet is feasible.”

But the key to success with diet-related issues is consistency. Ask virtually any dieter and they’ll tell you that staying on track is the difficult part.

For those with polycystic kidneys who could use an assist with ketosis, whether or not they need to lose weight or wish to change their diets, the Weimbs lab is developing a dietary supplement to add BHB to their regular intake. This patent-pending nutritional supplement would be similar to commercially available ketone products being offered as energy boosters, but formulated specifically for supporting kidney health.

“We want to make sure we don’t put anything harmful into the bodies of people with potentially compromised kidney function,” Weimbs said. “And some of the ketone products already out there are high in potassium and other ingredients that could be detrimental.”

In addition, the supplement being developed is combined with another nutrient the Weimbs Lab has recently shown to inhibit cyst formation in PKD by a completely different mechanism from BHB, thereby approaching the problem from two directions. While not a drug — and therefore less expensive and essentially free of serious side effects — the supplement is nevertheless intended for use by those under medical supervision. Members of the Weimbs team are planning to conduct a clinical trial to test their supplement mixture in people with PKD. Assuming all goes well, they are planning to launch a company to make it available.

“We’re really excited that we can actually provide a supplement that potentially could help many more people than dietary intervention alone,” Weimbs said.

Research in this study was conducted also by Samantha Kruger, Caroline Briderick, Tselmeg Amarlkhagva and Shagun Agrawal at UC Santa Barbara; John R. Dodam and Leslie A. Lyons at the University of Missouri and Michal Mrug at the University of Alabama.


Cavalier de l'iPad:
 “ Every moment happens twice : Inside and Outside ..and they are two different histories ..! 
Carpe diem🌀
On 16 Jul 2022, at 7:07 pm, "anthony...@fastmail.co.uk" <anthony...@fastmail.co.uk> wrote:

j bayne

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Jul 27, 2022, 7:32:04 AM7/27/22
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Ken Muschelewicz

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Aug 4, 2022, 11:08:55 AM8/4/22
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Hello Diana,

Several weeks ago i sent this on to you about these guys touting a Cure for PKD using their Herb Treatment!  Yet my friends in Emory Univ. in the PKD research center never heard of them.  Never the less, these guys maybe on to something or they are just getting a Placebo affect!  I am curious if those herbs would do Damage to the stressed kidneys.  

Please look the list of those herbs over and give me your thoughts!

Thank you.
Kind regards
Dr Kenneth Muschelewicz

Sent from my iPhone

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From: Ken Muschelewicz <kmus...@yahoo.com>
Date: 11. July 2022 at 13:39:53 GMT+3
To: pkd...@googlegroups.com
Subject: Polycystic Kidney Disease PKD diet, this is a questionable treatment!

Hello All,
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