Clinical Trial

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Diane

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May 9, 2020, 3:02:45 PM5/9/20
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Have any tried the Vegan Keto PKD Trial? or intermittent fasting?



Diane

Mark de Buisseret

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May 9, 2020, 3:30:27 PM5/9/20
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Nope.

Mark

On Saturday, 9 May 2020 Diane <polycysticl...@googlegroups.com> wrote:
Have any tried the Vegan Keto PKD Trial? or intermittent fasting?



Diane

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Afshin

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May 9, 2020, 3:35:18 PM5/9/20
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I have not, but I've been interested in learning more and potentially trying out the Vegan or Vegetarian Keto Diet soon.
There are a few people who are on that diet I've been hearing from on Dr. Weimbs Facebook group.

Afshin

Diane

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May 9, 2020, 4:15:03 PM5/9/20
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Me too! I just had my interview to participate in the trial. I told them I am 73, is this OK for the trial? Dr. Wiembs said yes!

So here I go. I am in the intermittent fasting group. I eat at 10:30 and 3:30 each day, I bought some BHBoost, It has not arrived yet, I do not want to lose weight I just want to improve my creatinine.

I read about a 74 y/o male who improved his creatinine from 1.24 to 1.19.  This is great.

~Diane

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Afshin

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May 9, 2020, 4:59:02 PM5/9/20
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Diane,

Which Vegan Keto clinical trial are you referring to?

I know that Dr. Weimbs is conducting interviews on people who have had experience with ketogenetic diets.  Is he also doing a vegan keto clinical trial?
If so, I'd be interested.

Also what made you decide to start with BHBoost?  Any reason to go with that particular brand?


Afshin



On Saturday, May 9, 2020 at 4:15:03 PM UTC-4, PLDiane wrote:
Me too! I just had my interview to participate in the trial. I told them I am 73, is this OK for the trial? Dr. Wiembs said yes!

So here I go. I am in the intermittent fasting group. I eat at 10:30 and 3:30 each day, I bought some BHBoost, It has not arrived yet, I do not want to lose weight I just want to improve my creatinine.

I read about a 74 y/o male who improved his creatinine from 1.24 to 1.19.  This is great.

~Diane

On May 9, 2020, at 9:35 AM, Afshin <at....@gmail.com> wrote:

I have not, but I've been interested in learning more and potentially trying out the Vegan or Vegetarian Keto Diet soon.
There are a few people who are on that diet I've been hearing from on Dr. Weimbs Facebook group.

Afshin


On Saturday, May 9, 2020 at 3:02:45 PM UTC-4, PLDiane wrote:
Have any tried the Vegan Keto PKD Trial? or intermittent fasting?



Diane

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Diane

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May 9, 2020, 5:25:00 PM5/9/20
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Afshin, Yes, he, Dr, Weimbs is developing a supplement which he thinks will be available in 2021.

Dr. Weimbs is doing a vegan keto diet, an intermittent fasting dies (this is me) coupled with BHB.

I choose BHBboost because it was listed as among the top ten, I will see
.BHB
"These results suggest that cystic cells in PKD are metabolically inflexible, which could be exploited by dietary interventions or supplementation with BHB, representing a new therapeutic avenue to treat PKD."


~Diane

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Afshin

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May 9, 2020, 5:35:28 PM5/9/20
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Yes, I have heard about the supplement, which sounds exciting.

I'm currently looking into different BHB supplements to see which one would be best to take.  Did you take into consideration the salt or sodium levels of the different brands before you settled on BHBoost?  I'm assuming this is the one you're referring to?  https://www.clinicaleffects.com/products/keto_BHBoost/

I have also heard names like Keto Force and Ketone Ester being mentioned as good ones.  Though I'm not sure yet, still looking into it.

I will get in touch with Dr. Weimbs to see learn more about the clinic trial.

Thanks!
Afshin



On Saturday, May 9, 2020 at 5:25:00 PM UTC-4, PLDiane wrote:
Afshin, Yes, he, Dr, Weimbs is developing a supplement which he thinks will be available in 2021.

Dr. Weimbs is doing a vegan keto diet, an intermittent fasting dies (this is me) coupled with BHB.

I choose BHBboost because it was listed as among the top ten, I will see
.BHB
"These results suggest that cystic cells in PKD are metabolically inflexible, which could be exploited by dietary interventions or supplementation with BHB, representing a new therapeutic avenue to treat PKD."


~Diane

Diane

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May 9, 2020, 6:00:44 PM5/9/20
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I looked at the ingredients of BHBoost, It does contains sodium which can affect Blood Pressure, I have also heard that there is a powder to take,
BHBoost comes 3 tablets per day, I was only going to try one.

My nephrologist, Dr. Vicente Torres told me not to take these until human clinical trials are completed, I am going to ask Dr. Weimbs what to take,

~Diane

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Denise Gosselin

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Dec 20, 2020, 5:54:02 PM12/20/20
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Hi Diane - Happy Holidays!  I have not viewed the posts for a long time - so this is the first i hear of a polycystic diet trial.  any news?  Is it still ongoing?  Where can I find information?
Thanks!
Denise

Diane Smith

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Dec 20, 2020, 5:58:50 PM12/20/20
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Hello Denise!
There are several trials.  Dr Weimb’s is the keto diet for PKD.
  
You cannot change your diet and just do the intermittent fasting diet as I have done. 



Sent from my awesome Gold iPhone 12

~Diane


On Dec 20, 2020, at 12:54 PM, Denise Gosselin <denis...@gmail.com> wrote:

Hi Diane - Happy Holidays!  I have not viewed the posts for a long time - so this is the first i hear of a polycystic diet trial.  any news?  Is it still ongoing?  Where can I find information?
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Denise Gosselin

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Dec 21, 2020, 2:18:23 PM12/21/20
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Thanks Diane!

Mark de Buisseret

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Dec 21, 2020, 2:22:23 PM12/21/20
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Hi

If you are like me and on dialysis there is a need for a balanced meat eating diet. This because all the dialysis consumables are set for such a diet.

Mark

Kathryn Hayes

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Mar 4, 2021, 12:46:39 AM3/4/21
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Diane
I am considering the Keto Program with Ren.Nu which is part of Dr. Weimbs work but I am confused about exactly what they are offering and how strict etc.
What was your experience with this organization?
They are giving me 24 hours to sign up and pay $600 for a 12 week program but I cannot see what is included in the 12 week program so getting pretty frustrated
Any thoughts?|
Thanks so much in advance!!

Diane Smith

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Mar 4, 2021, 12:50:14 PM3/4/21
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Dear Kathryn
Do not sign up for this at $600. This is a scam. The researchers charge nothing 






Sent from my awesome Gold iPhone 12

~Diane


On Mar 3, 2021, at 7:46 PM, Kathryn Hayes <hayes....@gmail.com> wrote:


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Diane Smith

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Mar 4, 2021, 12:57:00 PM3/4/21
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Consider the keto program but do not pay $600. It is false. I paid nothing. In fact the researchers involved in the program said to me that they had not asked me to buy anything. 


Sent from my awesome Gold iPhone 12

~Diane


On Mar 4, 2021, at 7:50 AM, Diane Smith <smith...@mac.com> wrote:

Dear Kathryn

Kathryn Hayes

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Mar 4, 2021, 1:02:56 PM3/4/21
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Diane,
Thank you so much for the quick response.
This is the email from the Ren.Nu Team claiming 112 weeks of classes and a couple sessions with a dietitian and the BHB Supplements. I am interested in the supplements but sounds like I might be best waiting until they are commercially available.
I also wanted to let you know although I am going to need a double transplant soon, I am still taking Lanriotide injections every 28 days. I was at Mayo for 3 years on Paseriotide, and now I am 4 years on Lanriotide. I think it keeps this crazy huge liver from killing me - but would love to get this transplant and a new chance at life. I am 63 and my functions are still relatively normal, but my all organs are huge!
I appreciate all you do for so many of us!!
Thank you
Kathryn

###
We have had an opening become available and are so excited to invite you to the Ren.Nu PKD Nutrition Program if you would still like to participate.

IMPORTANT next steps:

  1. To begin the enrollment process, please click here.
  2. You will start by clicking on "BOOK NOW" near the end of the first page to find a time for your Initial Dietitian Session. You will then be led through the intake forms for the program. All items with an asterisk are required. If they do not apply, please type "N/A" in the appropriate places.
  3. Once all intake information has been filled out, you will be prompted to complete payment.
  4. Once the enrollment process has been completed, please check for an email from The Ren.Nu Program titled, "Join the Ren.Nu Program on Practice Better" (check your spam folder). Please click on "Activate my Account" in the email to set a login and password to access your Ren.Nu Program.
  5. Please check your email for your Initial Dietitian Session confirmation with information on how to join the video call.

Please note, to keep your reserved spot in this program, enrollment must be completed by tomorrow, Thursday 3/4 at 11:59pm ET. If enrollment is not completed by this time, your spot will be offered to someone else on the waitlist.

If you have any questions, please reach out us at PKDR...@gmail.com. We're here to offer ongoing support for continued success.

Thank you,

The Ren.Nu Team


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Diane Smith

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Mar 4, 2021, 1:16:13 PM3/4/21
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A transplant? Is it your liver or kidney? 


Sent from my awesome Gold iPhone 12

~Diane


On Mar 4, 2021, at 8:03 AM, Kathryn Hayes <hayes....@gmail.com> wrote:



Kathryn Hayes

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Mar 4, 2021, 1:47:51 PM3/4/21
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Diane
I need both as both of my organs are loaded with thousands of very small cysts so no other intervention possible

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/180D929D-4CA3-4272-B6EC-4B72DF880F82%40mac.com.

Diane Smith

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Mar 4, 2021, 2:14:57 PM3/4/21
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I hope the transplants are soon in coming!


Sent from my awesome Gold iPhone 12

~Diane


On Mar 4, 2021, at 8:47 AM, Kathryn Hayes <hayes....@gmail.com> wrote:



Diane Smith

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Mar 4, 2021, 2:18:26 PM3/4/21
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Can Nagorney  at the Mayo not do a liver resection ?


Sent from my awesome Gold iPhone 12

~Diane


On Mar 4, 2021, at 9:14 AM, Diane Smith <smith...@mac.com> wrote:

I hope the transplants are soon in coming!

Kathryn Hayes

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Mar 4, 2021, 3:05:44 PM3/4/21
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I wish I could say they are but I cannot qualify yet because of my function = and cannot seem to make the case for quality of life. I actually have two potential live donors as I will need two if they are live and one if it is a cadaver. Still my score is not high enough to even begin the process ): - I hate that I will be getting older and sicker before I can get the treatment I need from this transplant!!

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/282AB870-23A6-4F44-ACD4-268857E8BE55%40mac.com.

Diane Smith

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Mar 4, 2021, 5:46:28 PM3/4/21
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Dr Torres has a lecture on a liver transplant. They need a portion of one liver and one of the person’s two kidneys. 

I don’t think you should try the keto diet right now. You will need all your reserve fats   

There is also Dr. Robert  Montgomery

See Patrick


Sent from my awesome Gold iPhone 12

~Diane


On Mar 4, 2021, at 10:06 AM, Kathryn Hayes <hayes....@gmail.com> wrote:



Kathryn Hayes

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Mar 4, 2021, 7:11:51 PM3/4/21
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Diane,
I am trying to stick to Keto as best I can and always been vegetarian, which I think has been helpful - a little concerned about the excess focus on fats in Keto, as my liver although functioning is quite damaged, but I listen to my body as best I can
I'll check out Dr. Torress' lecture on liver transplant. If you want an  interesting show to watch, Surgeons Cut on Netflix shows a live Liver Transplant that the Hospital I will be going to UCSF
thanks again!!

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/2A3E7FA5-1A1E-48C0-9B3C-F297D8120C99%40mac.com.

Mark de Buisseret

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Mar 14, 2021, 5:13:25 PM3/14/21
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Surely cystic kidneys could be removed prior to transplant but at a risk of Addinsons Disease?

Mark

Kathryn Hayes

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Mar 14, 2021, 5:17:07 PM3/14/21
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Right now my kidneys are still functioning so they won't touch them - but they are prepared to do a double transplant and take both kidneys and the whole liver out at the same time.
The organs are all pretty stuck together anyway, so not sure they could get the kidneys out without the liver

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/875654472.519365.1615756400910%40mail.yahoo.com.

Mark de Buisseret

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Mar 14, 2021, 5:50:01 PM3/14/21
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Yes normally they do seperate the kidneys. Sometimes they are smashed up inside and pulled inside a plastic bag but most often they are pulled out whole for trainee doctors to look at. Normally its one organ at a time. Given that the new kidney goes in the hip caverty there is only a need to take one usually but the other goes if causes a significant  problem. Having them out doesnt cure pain issues very often.

In my case filteration has gone but the hormone and bp control ok so I hold onto my native kidneys. 10 years ago nine surgeons and a trainee wanted one of them out. I refused when it transpired the trainee needed more nephrectomy experience and they couldnt guarantee not taking my adrenals out as well so Id end up with Addinsons. This killed my mother and is very nasty. Mp bp and hormones are great still and my blood too thick but its easier to control than not having enough.

Mark

Kathryn Hayes

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Mar 14, 2021, 6:12:21 PM3/14/21
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Sounds like there is a real advantage to keeping the kidneys, but I am afraid mine are so big and so cystic that I can't achieve quality of life with them in!
Also one is dropped so it sits on my bladder, which is not fun! What a disease we have!

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Mark de Buisseret

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Mar 14, 2021, 6:18:27 PM3/14/21
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Mine are huge and are crushing organs and pressing on my back but men do have a bit more space than women as we have few reproduction organs. That said my quality of life has slipped now to two out of 10 as im on dialysis machine with all the restrictions 24 hour pain meds and still in head to foot agony.  At the moment my bladder is getting very little use.

Diane

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Mar 15, 2021, 5:53:35 PM3/15/21
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Dear Kathryn, Here is an article about (when you can) remove the native kidneys.


Addison’s is the removal  of a tiny organ called the adrenal gland sits ontop of the kidneys.  I would ask the transplant team.  Patrick who searched around for someone to remove his natives, found a surgeon. His story is here:


-Diane

Kathryn Hayes

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Mar 15, 2021, 5:56:57 PM3/15/21
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Thanks Diana! Very helpful!

To view this discussion on the web visit https://groups.google.com/d/msgid/polycysticliverdisease/3AE7009D-6B4E-452B-9017-5F65600DA5C3%40mac.com.

Mark de Buisseret

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Mar 15, 2021, 7:07:54 PM3/15/21
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In the case of pkd kidneys they grow around the adrenals making them impossible to find thus causing the Addinsons when the whole lot is taken out. To compensate you are put on cortisol pills now to prevent the problem but this does not work as your need for cortisol varies from second to second and in the uk we have huge problems getting any pills at all. My mother wasnt diagnosed with Addinsons until 5 years after. She never could monitor cortisol levels as theres no home test kit like you get for insulin. She was supposed to be given an emergency kit but then some consultants overruled this on grounds of cost ignoring the fact the hospital is 35 miles away and that by the time an ambulance gets to our house she could have been dead.

Every time my mother stayed as an in patient doctors stopped the cortisol as usually it was not on the approved drugs list for the ward and even so as a steroid they are stopped to prevent them hiding symptoms. This means that if she was in for gall bladder or something she had an Addinsons crisis and either a heart attack or tia soon after. Sometimes it was both.

With addinsons your blood pressure drops through the floor. Eventually nothing increases it and your bp gets too low for dialysis and it kills you. This is what happened to my mother but it is not just a uk issue and is why i turned down a transplant.

During my mothers time with it she had 5 cardiac arrests, heart attacks and thousands of TIAs. The cortisol shortage dramatically changed the way she thought and took away her ability to apply logic at times. Twice i had to disarm her and there were many other ocaisions where she chased people around carrying a weapon, not a gun during a crises. Theres no way I would knowingly force this disease on my partner or anyone else even though the size of my kidneys and lack of a transplant is shortening my life.

Mark

Mark de Buisseret

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Mar 15, 2021, 7:17:10 PM3/15/21
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My mother had it for 20 years so Ive seen what it does and how the need for a constant cortisol monitor and decent cortisol supply needed.

A charity has trained a medic alert dog to inform its owner of a pending Addinsons crisis so they can take action. Theres at least a four year waiting list for a dog but the charity gets more money for training dogs to detect cancer so consequently they get priority. This same charity has now a long list of conditions it can train dogs to detect and can use any keen young dog that likes sniffing so adopts from rescue centres dogs suitable for the new owner not just a standard one size fits all dog.

Mark

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