Allgemein

We’re already going strong in my Series on what you can do to slow down PKD, or even reverse it. It depends on the severity of your condition. You might be thinking- “why is he telling me all those details? Just tell me what to do!” – but this is the thinking that modern doctors often encourage. I’m telling you today, the best doctor in the room- is YOU. We all have to know this stuff, so we can find out what’s working for each of us individually, and what is not working. And we can share the results here! wonderful, right? So today’s PKD mechanism is: SIRT1! And todays molecular Trigger… Niacinamide! You might have heard about the study on Niacinamide and PKD thats been going on for some time now.

Link: https://www.clinicaltrials.gov/ct2/show/NCT02558595 Niacinamide (which is NOT regular Niacin, don’t confuse them) has been shown in animal studies to slow cyst growth by inhibition of SIRT1.

Currently, human trials are done to see if it works in humans, too. But do you have the time to wait? Can you risk waiting for the study to complete? No. You have to decide now what you’re going to do. This one is a little more nuanced than most of the mechanisms we are talking about. See, SIRT1 is a longevity pathway- and in this case, inhibiting the longevity of the cysts also may inhibit our own longevity. If you are in a late stage of PKD, you might decide to go all in and use Niacinamide to inhibit cyst growth as much as you can, maybe just until you are on the right track again. In an early stage I would probably forgo this one, until you have tried all the other supplements and mechanisms (start with mTOR) and see if they make a difference for you.

Normal Niacin is still a good idea for everyone: 50-100mg of niacin per day is a great anti aging strategy.

Should you decide to go ahead with it- on to SIRT1. SIRT1 is an enzyme that “deacetylates proteins that contribute to cellular regulation”. One of Sirtuin 1’s duties is to block Apoptosis, the healthy controlled cell death of damaged cells like cysts, but also other damaged cells, which can be induced by something called p53. We will hear more about that. So if we inhibit SIRT1, more cystic cells will be recycled! Thats great. One caveat, though: Always take Niacinamide with lunch, if you are doing bulletproof intermittent fasting (which you should be doing) – because Niacinamide also activates mTOR. Read all about mTOR in POST#02. If you flush(get all hot) from your Niacinamide, it’s probably been labeled wrong. Its regular Niacin. Get another formulation. You should titrate up from 100mg daily all the way up to 10mg/kg 3 times daily to get the dose equivalent to the study. Always take it with food so it’s easier on your stomach. If you get a stomach-ache, stop for 2 weeks, then try dissolving Niacinamide in water first and drink the water with food.

So for a 100kg person that would be 10mgx100kg=1000mg three times daily, so thats 3000mg total. Interested in Niacinamide? Great resources are here:

Doctor Saul knows all about it: http://www.doctoryourself.com/JOM1.html – Just replace “Arthritis” with “PKD” in your head. 😉 Heal well!

So, recently our new member and prolific researcher Thomas Weimbs made me aware of his 2019 paper on microscopic kidney stones that increase cyst growth in PKD. Where do they come from? You guessed it… Oxalates in your food. There is a reason I recommend the bulletproof diet for you guys! 🙂 By doing bulletproof, you naturally avoid these nasty plant defense molecules. But lets talk about what happens when you eat them first: So, you make yourself a nice raw kale smoothie or enjoy some baby spinach in your salad. You dont think much of it, if you are sensitive, you might notice your teeth getting a little rough on the outside.

Thats oxalic acid sticking to the calcium in your teeth- and it does exactly the same thing once it is inside your body. It sticks to the calcium in your blood, your urine, your organs,… and forms tiny, very hard and jagged crystals. These then deposit in many places, causing kidney stones or even painful sex in women (yes, they deposit in the vagina for some women and their doctors have no idea whats wrong.) However, even if you dont have kidney stones, you will still have microscopic tiny calcium-oxalate crystals floating around in your kidney, and every time they cut a tiny bit of kidney tissue when they slosh around, your kidney is injured, which in turn leads to a cyst growing in that place on many occasions. So, you ask, what if you have been consuming leafy greens uncooked for pretty much all your life now and you probably have a lot of these crystals in your kidney? Well, normally your body produces something called citrate. You can think of it just like descaling your water boiler. Add some citric acid, give it some time and all the calcium deposits dissolve and it becomes shiny and like new again! Your body uses its own citrate to dissolve these crystals, and it does it better when you are younger.

As PKD progresses and you age, your production of citrate may go down. This is a reason why the bulletproof diet is a very alkaline diet. For example my recent urine pH was 7, which is on the alkaline side of optimal. As Thomas Weimbs showed in his paper, when citrate levels are low (measured in urine) people tend to have more cysts in PKD. Less citrate means more tiny crystals which means more injury which means more cysts. What can you do? There are two options: You can supplement citrate or you can supplement malate. If you are still in early stages and want to keep your citric acid cycle going strong, you can increase your own citric acid production by supplementing with something like magnesium malate or another mineral form of malate. This is a softer approach that keeps you metabolic machinery working. The second option is supplementing citrate – in the form of sodium, potassium or magnesium citrate. For reference in one study 30% of patients dissolved all their kidney stones when they supplemented 3g of potassium/sodium citrate 3 times per day for 8 weeks.

Keeping that dosage for longer would probably work even better. You could do this indefinitely as long as your kidney function is good enough to stomach the large amounts of sodium and potassium. I personally have supplemented with similar amounts of potassium and find it to be unproblematic. I tend towards the first option for supporting your own citric acid cycle when its still in good shape, and the latter for more dramatic cases of later stage PKD. If you can handle the mineral load that comes with it, this seems like a very good and inexpensive idea. At the very least, we should get annual urine citrate tests done and start supplementing when the levels are low. Sources: https://labs.mcdb.ucsb.edu/weimbs/thomas/publications/1536 https://kidneystones.uchicago.edu/citrate-to-prevent-stones/

So, you surely have heard about this new miracle drug for PKD called Jinarc, or Tolvaptan. This is the one drug that has been approved in many countries to treat PKD. Isn’t that awesome? Well, let’s examine first, why Tolvaptan was chosen to be the first drug to be released for this condition. Most importantly, it is low-hanging fruit. Drug companies don’t like developing something new, as it is very expensive.

They like, however, to find new applications for stuff they already have lying around in their drawers. Such is the case with Tolvaptan. It was first studied in 1998 and developed by the japanese company Otsuka and they have a patent on it, so they are very interested to sell more of it. In 2010 it was approved for use in hyponatremia. (Low blood sodium) Tolvaptan is a vasopressin receptor antagonist.

The company gave it a try in PKD patients, since vasopressin is one of the many factors that is dysregulated in PKD. And sure enough, it did something. In fact, it lowered cyst growth by as much as 50%. Sounds great huh? Put that into perspective. While you would normally expect your kidneys to grow about 3% per year, now they would only grow about 1.5% per year. You lose 2.7 points in GFR per year instead of 3.7. So if you start out with a GFR of 100, you would gain 10 years of kidney function.

To get this, you’ll be constantly in need of a bathroom for the rest of your life – and your kidneys will still shut down eventually. To add to this, you will likely have to stop the medication a couple of years in, because it may harm your liver. To quote the FDA: “…cannot rule out the possibility that patients receiving the drug for hyponatremia also are at a potential higher risk for irreversible and potentially fatal liver injury.” – Then you will have more organ damage than before. Great. On top of that, it is very likely that the whole reason Tolvaptan works is because it makes you drink a lot.

You can also just drink a lot if you want these effects. 7 liters per day is the target here. I don’t recommend this. Going for the development of a vasopressin receptor antagonist like Tolvaptan is far from the optimal route to choose though. There are many other mechanisms that are dysregulated in PKD, of which I have 12 listed in my previous article #2: “12 Mechanisms (for now)”. Many of these mechanisms have shown similar or more promise than Tolvaptan in animal studies or in the lab. Even better, they can all be triggered with diet and natural supplements, so they are very low risk.

If you trigger multiple of these daily with the methods I have suggested, you will probably see an effect, and feel healthier and more vibrant overall. Unfortunately, there wont be any big studies done on those. Why? Natural approaches are: 1. always better for you 2. but impossible to profit off of This is why you have to do it yourself. I did the first test for you. I got 7% reduction in Total Kidney Volume in three years of following the Bulletproof Diet and optimizing my health.

I should have gotten 9% growth. That is all the difference we need to stay healthy for a long time. If you ask my neph- this is impossible. Yet, he was looking at it. Get going friends! You can DO IT!

Good morning dear Friends! Read all of this. 😉
I’ll start this day off with by talking about Nutrition a bit.
You have possibly heard just to eat a “balanced diet”.
I’ll break it down easy:
We need 3 things from our nutrition.
1. Macronutrients
2. Micronutrients
3. Molecular Triggers (the exciting stuff!)
The diet that changed everything for me, and got me my first reduction in kidney volume is the “Bulletproof Diet” over at https://www.bulletproofexec.com/startthe-bulletproof-diet/
get the pdf here: https://www.bulletproofexec.com/…/BPDRMrast-06112014.55436.…
Dave Asprey does sell a book, but they have a free awesome podcast and hundreds of blogposts. It is science-based nutrition.
This first step might take you a couple of weeks or months. But this is the base of our house of health, we can not be stable without this base. Get educated and
get this right.
Look at the image below. It tells you all the foods that are in the “green zone” (good) and in the “red zone” (bad) and everything inbetween (orange) so you know
what to shop for to get started.
Once you eat the right stuff, it is important to check if you are doing it right.
For calculating your daily Macro- and Micronutrient intake there is a great website:
www.cronometer.com – enter one weeks worth of food in there and you will have an overview of your diet.
Look at what vitamins and minerals you are missing. Make sure you meet your calorie needs. Eat more if you want/have to.
Just keep the ratio of your calories 50-70% fat, 5% carbs and the rest protein. This is the bulletproof diet basis.
Get all your Micronutrient needs sufficient or exceed them. I can not stress this enough. You will need to supplement some, mostly minerals and some Vitamins,
depending on your Diet.
I supplement around 20-30 micronutrients and minerals daily.
For number three, our molecular triggers, I have collected some specific strategies to push the buttons of our PKD genes and slow , halt or reverse cyst
progression. This entirely depends on your condition, how many triggers you can push at any given time, and how well you meet your nutritional needs.
It also depends on how clean you keep your body. So no pesticides or old/moldy food. The bulletproof diet really is your best bet to eat CLEAN.
Get educated on its principles.
So, on to the triggers. There are two kinds of triggers. Supplements and Nutrition Strategies.
You might have noticed something else in the image below. “Protein Fasting” and “Intermittent Fasting”. These are 2 Nutrition Strategies that inhibit a substance
called “mTOR”. You will find this info on the bulletproof website aswell. What’s important for us to know, is that cysts can not grow without mTOR!
So we will press all the triggers we can get to suppress that mTOR for some hours every day. Think of it like a spring. Every trigger you do is another hand that
presses down on that spring that is mTOR, getting lower and lower. The lower mTOR is, the lower your cyst growth. It might even shrink them if you are really
disciplined. You can not, and should not suppress mTOR all day every day. But a few hours most days will do a lot for you.
I will tell you all about the other triggers in the next post. But now I need your feedback. Because I want you to really be able to change your life. Leave a
comment below and tell me if I wrote this well – So we can clarify anything that’s missing. Heal well! 🙂

PS: For a printable High-Resolution version of the Roadmap, go here:
https://www.bulletproofexec.com/…/BPDRMrast-06112014.55436.…

For anyone, who really wants to up their game while fasting and increase PKD-healing autophagy to the max, while inhibiting mTOR: I was recently challenged by my friend Ryan on the topic of polyphenols and their healing powers and I remembered there was a potent “Autophagy Tea” proposed by dr. Mercola recently.

I have ordered the ingredients and will incorporate this as my bedtime drink. This should, in theory, potentiate the effects of intermittent fasting and speed up any cyst shrinkage that’s going on.

the recipe:
1 tsp Pau d’ Arco powdered tea
½ tsp hydroxycitrate and garcinia (HCA/Garcinia powder)
½ tsp quercetin powder
½ tsp glycine powder
½ teaspoon chamomile powder
Lakanto monk fruit sweetenerto taste (optional)

You can get the ingredients here:
Garcinia 80% HCA: https://amzn.to/38fEPBM
Pau d’arco: https://amzn.to/2R1WIOF
Chamomile Powder: https://amzn.to/2NsyY3S
Glycine Powder: https://amzn.to/2uS2gCx
Quercetin Powder: https://amzn.to/2Ny6sxI
Lakanto sweetener: https://amzn.to/3FkWA5h

Source

If your doctor has advised you to restrict your protein intake, as is the case in later stages of kidney disease, that is a problem for your long term health- why? It puts you at a 100% risk of sarcopenia, cachexia and muscle loss. This makes intuitive sense- because, if you are not taking it adequate amounts of protein anymore, where can your body get it? Right! From your muscles- leading to you losing muscle mass. This is already a problem in the aging population, but restricting protein to under 0.6g/kg or lower, like nephrologists need to do in later cases will make this a lot worse.

Incidentally having too little protein available will lead to a decrease in kidney function in and of itself. We are told to limit protein because of its nitrogen content- and it is true that this, similar to phosphorous, will over time decrease kidney function even more. So what is the solution? How can we prevent muscle loss and, even better, prevent further decline in GFR while still limiting protein? Many centers have trialed supplementation with KA/EAA (Ketoacid Analogs of Essential Amino Acids) – these give the body the building blocks it needs to maintain muscle mass while being nitrogen-free. In human trials, these have shown to stabilize loss of kidney function, improve body composition and stabilize inflammation.

They wont cure kidney disease, but they will stabilize it. Just limiting protein on the other hand does not stabilize it as much. Much more important though: YOU dont want to be in the position of having difficulty getting up out of your chair one day just because you had to restrict protein. I’m normally no fan of pharmaceuticals. In this case it might just be the best option to supplement with these amino acids- your body needs them, badly. Oh, and- yes, I did check how naturally occuring essential amino acids stack up. It depends on your function. If you are still doing reasonably well, try them. If your gfr stays consistent, your body can use the extra amino acids to keep it that way for longer and you can spare the expense of getting the KA-EAAs.

They do however not have the low nitrogen content that the KA versions have. If you are severely restricted in protein, they might not be a good choice. This makes it all the more apparent, that it is most important you make use of the little protein that you are allowed to eat and make it a very bioavailable one, getting many essential amino acids in the process. Grass-fed beef, Whey, even eggwhites if you are limiting phosphorous. And maybe include EAAs as part of your allowed protein, so that it does not come on top. Say, eat 20g of beef protein and 10g of EAAs.

This will of course not help to keep your muscle mass a lot, so please do get your doctor to prescribe KA-EAAs to you. A dosage of 1 tablet of “Ketosteril” per 5kg of body weight was used in one study.

An over the counter alternative is this product:
https://www.ketorena.com
More reading:
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6312769/
https://www.ncbi.nlm.nih.gov/pubmed/29948444
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6770434/

Hey Folks! I hope you are getting settled in with the bulletproof diet and you have made your appointment for getting your data.

Today I am going to share one of my favorite research papers with you. In this study from 1997, scientists tested an interesting theory for PKD on two groups of PKD-mice. They fed one group of mice the standard chow, and the other group got a sterilized alternative, and were raised in a germ-free cage. And, you guessed it, the second group of mice essentially didn’t develop ANY cysts. 🙂

So: the second group of mice never had to deal with any germs, bacteria, mold-toxins, viruses and fungi, so they did not have cysts, although they had PKD. Interesting stuff, right? This is a citation from the study: “raising genetically cystic mice in a germ-free environment essentially eliminated cystogenesis and increased survivorship to nearly 100%” And this should be enough for all of us to really clean up our diets.

To not eat old or mushy fruits or vegetables with brown spots on them. To not eat pesticide laden meat from factory farming. And to drink really clean water without fluoride or medication residue. Getting a filter is a really, really good idea. Because all this stuff gets stored in cysts- and will make them grow larger.

What about you? Are you eating clean? 🙂 Have a great day, and heal well!

Source: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2627604/