Now, I'm not going to give out class recordings or anything, but I will let you know what I learn. It's out there on the internet already in lectures and science papers. It's just so impossible to get all of it in one place. But I'm going to learn how to eat the right amount and kinds of calcium with my meals. What oxalates I can flirt with and which I should avoid like crazy (before this I thought it was "avoid even the scent of any oxalate," but not so. PKDrs are eating oxalates and their GFRs are rising.) I will learn how to balance my meals, stay in ketosis without keto flu, and how to maintain this lifestyle forever.
I'm kind of excited. I expect as time passes, more and more people like me will put out more centralized information for PKDrs to follow. A good fellow, Steve Boswell, sent me this below on FB. It has a lot of helpful links. Let's just keep looking out for each other and someday, hopefully, we can stop dying from this. FYI, my dietitian has PKD. That's why she knows so much about it. Alas, the research was coming out when it was too late for her and she had the transplant. But, I'd imagine, even those with a transplant would want to go with the ketogenic method since those organs are still growing inside their bodies with the disease.
PKD Treatment Guide
Part 1:
This is my "mini book" put together with much of what I've learned in the many years of having and studying PKD and CKD. Keep in mind, I am not a doctor or certified. Knowledge is everything. Few doctors know anything about clean/healthy keto or how to improve your prognosis.
They always told me there was nothing that could be done about PKD. They were wrong. You're mostly on your own, but there are a few exceptions, like Dr. Thomas Weimbs at UCSB. Some docs will even say to avoid keto, but they only know keto as Atkin's type keto diet with high-protein junk food and hotdogs. Healthy keto is truly the opposite of that. It's important to understand that PKD is not unique in a way that makes treatment different from other common diseases.
The number one cause of death in PKD is heart and cardiovascular disease. The top risk factors for PKD are obesity, diabetes, and hypertension, so a diet for one is a diet for all. The "DASH" diet has typically recommended for all those comorbidities, but a recent trial proved that a keto diet provided almost twice the improvement in weight loss, reduction in blood pressure, and glucose/insulin control as DASH.
Keto heals!!!
The benefits of a keto diet are now proven, but what kind of keto? It's a clean whole-food keto diet, and best for "everything" including kidney cyst growth, metabolic syndrome, mitochondrial dysfunction, high blood pressure, hyperglycemia, hyperinsulinemia, hyperlipidemia, diabetes, heart, immunity, weight loss, inflammation, hernias, GERD, liver cysts, PCOS, tinnitus, thyroid function, weight loss, vision health, gout, neuropathy, arthritis, cancer, many brain disorders like depression, Alzheimer's, and Parkinson's, and more. Side note, my "incurable" heart condition also disappeared eating this way. Some doctors warn against keto diets because they confuse keto with ketoacidosis. Those are two completely different things. Only type 1 diabetics need to be concerned about ketoacidosis. For everybody else, keto is perfectly safe.
If a doctor tells you keto is bad, tell them you are primarily cutting sugars, high-glycemic carbs, inflammatory seed oils, and highly processed junk food. Ask which of those you shouldn't cut, and ask them to show you the studies that support their bias. They won't have any. The bottom line is: Good food is medicine. Bad food requires medicine.
At age 66, I completely controlled my PKD to the point that I consider it a treatable disease similar to how diabetes is treatable. Every textbook and nephrologist for 30 years told me to expect a gradual decline in kidney function until dialysis and the transplant (as happened to my dad and same-age sister who both died of PKD-related kidney failure at my current age). Still, some people (including myself) have been able to slow and even reverse the decline.
Cysts need glucose to grow. Cut glucose and they stop growing or in many cases start shrinking (like mine). I've been eating a very-low-carb clean whole-food low-oxalate purine-cautious low-phosphorous anti-inflammatory keto diet (appx 75% fat, 10% carb, and 15% protein), daily IF (I do 19/5 but 16/8 is very good) plus an occasional 2-day water-only fast, super hydration, and maintaining a neutral urine pH. Intermittent fasting improves autophagy and cellular repair. It's good to monitor your urine pH and keep it near 7.0. I use KetoCitra (BHB and electrolytes) which improves ketosis and helps keep a proper pH to make sure that calcium oxalate, calcium phosphate, and/or uric acid microcrystals can't form and cause damage in the tubules. Those crystals are knife-like shards that cut the small tubules as they pass. It is those small injuries in the renal tubule epithelium that are now understood to be the initial cause of cyst formation (even in non-PKD). When I started doing all that, my eGFR decline reversed, and within 3 months all my nasty symptoms were gone (pain, GERD, bloated feeling, high blood pressure, and heart rate started to fall).
In 2013, my eGFR was 96, and my largest cyst was 5cm in diameter, which quickly grew to 10cm, then 13cm, then 18cm in 2018 when my eGFR dropped to 54 and was falling rapidly (14 per year). I was told by my nephrologist, I was 3 years from dialysis, or maybe 4 years if I took Tolvaptan (JYNARQUE). I declined the medication in favor of increased hydration to modulate vasopressin (poor man's Tolvaptan. lol) and diet and lifestyle changes. Jump ahead to 2022 (3 years on keto), my eGFR is now a reasonably normal 84, and per my last MRI, my largest cyst shrank in volume by 55% (18cm diameter down to only 10cm).
All my symptoms are gone, and my blood pressure and heart rate are normal with no medications. Healthy/clean keto, IF, low oxalate, hydration, and KetoCitra worked!
Remember there are several possible causes of kidney failure (severely reduced eGFR). The number one cause is diabetes, high blood pressure, and obesity, which cause kidney failure related to metabolic syndrome and independent of the PKD gene defect. Not coincidentally, those are also the primary cause of heart disease and death. The other two reasons are PKD-related, cyst mass effect, and tissue fibrosis or sclerosis. Cyst mass effect is when kidney cysts start interfering with blood and/or urine flow within the kidney. Fibrosis and sclerosis are the results of blood circulation being cut off long enough that kidney tissue dies and turns to scar tissue. The outcome of anyone starting this protocol is determined by which of those 3 is most prevalent and at what stages, but there is every reason to be hopeful to see improvement for anyone with some residual kidney function, especially for all who are primarily affected by diabetes or mass effect type decline. How would you know which you have? You probably wouldn't know. The treatment is the same: healthy/clean keto, IF, low oxalate, hydration, urine pH control, whole unprocessed foods, etc.
PKD commonly affects the liver and can cause symptoms such as abdominal pain, swelling, and jaundice (most problematic in women). One way to prevent or slow down the progression of liver complications from PKD is to limit the intake of alcohol and fructose (fruit juices, sweet fruit, honey, HFCS, table sugar, etc.). Alcohol and fructose are both metabolized by the liver and can cause fatty liver disease, increased uric acid, insulin resistance, metabolic syndrome, and increased liver volume. The best research on this is being done by Dr. Robert Johnson at the University of Denver. [1]
Some will ask if eating so much fat will cause heart disease.
The answer is no. Along with having ADPKD, 5 years ago and pre-keto, I was on the FDA-recommended low-fat diet, and I was diagnosed with irreversible and progressive heart failure (diastolic dysfunction, inverted T wave, 35%EF, immobile septum, mitral regurgitation, drug-resistant high blood pressure, and tachycardia). Knowing that heart and kidney problems are connected by diet, high glucose, insulin, inflammation, and metabolic syndrome similar to diabetes and obesity (I was neither), I started self-treating with an "anti-diabetic" diet that became a full-time healthy/clean keto diet (not hotdogs), moderate protein, high-fat diet, and intermittent fasting, and for the last 3 years, I've been in ketosis. I only eat whole foods and avoid processed foods and inflammatory seed oils. Doing that, my heart is now 100% normal without medications, EF55% (normal), T-wave normal, BP normal with no meds, tachycardia completely resolved, and kidney function normal (eGFR 84). Remember, your brain, nerves, myelin sheath, and hormones are made out of fat and cholesterol. Those are essential to optimal health.
Part 2:
Some will ask if it's okay to stay in keto full-time, or can the body "forget" how to use carbs. My answer is for most people, staying in ketosis is fine, because even when in ketosis, your body uses some carbs by making them out of fat or protein as necessary via a process called gluconeogenesis (GNG). Also, life is always throwing carbs at us. "Cheat days" or carb days are inevitable. To be cautious, occasionally monitor your ketones and glucose with a KetoMojo or similar meter. When you eat some carbs, check your glucose. It should rise then fall, which means your body is responding normally to that glucose load. Ketosis is not a "compromised state."
Being in ketosis is a normal human condition designed or evolved to help us survive long periods of food shortage through the winter. Because of modern "advances," food winters never come. Our bodies thrive on the reset provided by ketosis.
Low Vitamin D levels are common in PKD, but are critical for proper immune function. D3 must be converted into 1,25-dihydroxy vitamin D3 to be used by the body. That is the D3 that should be tested for when you get your labs. I take 5,000iu D3 daily which includes 180mcg MK7. Titrate up until your levels are middle to upper normal (70 to 100ng/mL). A good starting point is 1000 iu D3 per 25 lbs body weight. Speaking labs, eGFR is estimated based on your creatinine level, which itself is quite variable based on your lean muscle mass, illness, exercise type and amount, meat in the diet, hydration level, supplements like creatine, etc., and why I prefer the calculation to be made with Cystatin C, but don't feel like you need to "chase" your reading.
Many advocate drinking Bulletproof and/or MCT coffees in the morning. I don't advise using them unless you are new to IF or struggling with hunger to make it to your eating window. I think the benefit of better autophagy by going without any calories more than offsets any possible benefits of drinking them.
Here are 5 steps to get you started.
1 My diet. 2. Quick start videos. 3. the science of why this works. 4. a plant-focused diet option. and 5. some groups to join to get help and learn more.
1. Diet: Here's what I eat, and it's working GREAT. Avoid simple carbs, starches, and sugars (bread, pasta, rice, starch, potato).
Avoid or limit fructose (HFCS, honey, table sugar, and sweet fruit). Fructose is evolutionarily designed to be available in the Fall to store fat for survival during Winter scarcity. In modern times with year around fructose, many people consume too much and it can become a problem, such as non-alcoholic liver disease (fatty liver), gout, and high uric acid. Eat LOTS more quality fat, olive, walnut oil, flax oil, fish oil, avocado oil, coconut oil, grass-fed butter, and fats in real foods eg avocados and salmon, grass-fed meat, full-fat sour cream, etc. Eat quality whole foods such as cauliflower, cabbage, kale, bok choy, peppers, broccoli, onion, walnuts, avocados, and pasture-raised eggs. Avoid processed anything such as processed or prepared food, and avoid seed oils like canola, corn, soybean, safflower, etc. Avoid foods high in oxalate, phosphorous, phytic acid, and purines (spinach, beets, almond, cashew, beans, refined grains, lectins, and saponins).
It's important to understand the errors in past dietary advice. Saturated fat and cholesterol ARE NOT HARMFUL. For example, eat as many eggs and as much butter as you like! Stay well hydrated with a urine pH near 7.0. Take KetoCitra if you can. Get a KetoMojo meter to ensure that your ketones are in range. Generally, ketone levels move opposite to glucose levels, and a ketone level range of 1.0 to 2.0 works well for PKD, but that's after you are fat-adapted and your body is using ketones for energy. It can take some time to get to that point, as much as a few months. If your body is making ketones but not using them yet, your ketone reading could get high for a time, even as much as 8.0 and it's not a problem. It should stabilize naturally. A good target for protein is 0.8 to 1.0 grams of protein per kilogram of body weight. If you are tracking your amino acids, look primarily at leucine, lycine, and methionine. I recommend avoiding concentrated protein powders as they can stimulate mTOR and other growth factors associated with cyst growth similar to how excess insulin is a growth factor.
2. Here are a few "quick start" videos that could be helpful. Keep in mind they are not PKD-specific, but they're still valuable. The difference is for PKD, you want to avoid high-oxalate foods like almonds and almond flour, spinach, cashew, and beets. A full list of oxalate content is at the end in "References." Remember, the number one cause of death in PKD is cardiovascular/heart disease. Keto is heart-healthy. Caring for the whole body is vital.
Just because a product says keto doesn't mean that it's good for you, heavily processed foods with inflammatory seed oils are not good for you.
Keto starter video with Dr. Berg.
https://youtu.be/dR6TnC1RY_8
Shopping and keto guides by Dr, Stenberg.
https://youtu.be/9SUt7PEB3-c
https://youtu.be/3jeJ9A8YhI8
3. The Science: To understand the science more fully, here's an excellent video of Dr. Weimbs speaking to doctors and experts at the Canadian PKD conference in Oct 2022 explaining the latest research in non-pharmaceutical treatment for PKD that will give you an understanding of the science behind why all this works. Be advised, it's to professionals so it's given at a very high level, but he explains the science of why natural treatment can reverse cyst growth in PKD. Must see for anybody that wants to understand and solve the PKD/PLD riddle.
https://youtu.be/o1LueUqLLZo
4. Here's a great video about one type of keto diet for PKD that is "plant focused." The speaker is a renal dietician and PKD expert, Jessianna Saville RD, CSR LDN. She's excellent. I've worked with her personally. I eat more meat than she recommends. I can't say who's right for sure.
https://youtu.be/P3asTaUAAX0?t=5
5. You're not alone. Join these groups and stay connected to others doing this. The first group is "plant-focused." (not vegan or vegetarian which eventually leads to malnutrition and eventually becomes harmful). The 2nd group is "Bulletproof focused" but accepts all healthful kidney-friendly strategies.
https://www.facebook.com/groups/pkdnutrition/
https://www.facebook.com/groups/reversingpkd/
And this is a link to a top PKD researcher, Dr. Thomas Weimbs.
https://www.facebook.com/groups/weimbslab
My diet is something in the middle of the 2 group strategies. There's not enough data yet to know which of the 2 diets or mine are best. As far as I'm concerned, I feel my PKD is effectively cured. I know that's a big claim. There's nothing to lose by giving clean keto and IF a try. I hope you do and keep everybody posted on your great results! and LMK if you have questions. FYI, I have no financial interest here other than I'm doing all these and they are working great for me. I know that's a lot, but it will all be worth it down the road.
Now, go back to the top and re-read it until you have the key points committed to memory. Every detail makes a difference.
Good luck and Best regards
Part 3:
References:
High fat is good. Low-fat diets are dangerous. The people that claim quality fats are a risk factor are wrong.
Coronary heart disease were at increased risk of an adverse outcome if they consumed a low-fat ‘heart-healthy’ diet
https://openheart.bmj.com/content/8/2/e001680
A Reappraisal of the Lipid Hypothesis.
https://www.amjmed.com/article/S0002-9343(18)30404-2/fulltext
Saturated fat is good for you!
Saturated Fats and Health: A Reassessment and Proposal for Food-Based Recommendations: JACC State-of-the-Art Review
https://www.jacc.org/doi/abs/10.1016/j.jacc.2020.05.077
Cholesterol is not a risk factor. Eat more and live longer! The brain, nerves, myelin sheath, and hormones are made from fat and cholesterol!
Lack of an association or an inverse association between low-density-lipoprotein cholesterol and mortality in the elderly: a systematic review
https://pubmed.ncbi.nlm.nih.gov/27292972/
Heart disease: The forgotten pandemic
https://www.sciencedirect.com/science/article/abs/pii/S0091743521003601
Here's a full list of foods and oxalate:
https://kidneystonediet.com/oxalate-list/
Low serum bicarb (CO2, Total CO2, Carbon Dioxide) associated with worse outcomes.
https://academic.oup.com/ndt/article/36/12/2248/6055244
Urine alkalization facilitates uric acid excretion
https://pubmed.ncbi.nlm.nih.gov/20955624/
Serum uric acid levels and endothelial dysfunction in patients with autosomal dominant polycystic kidney disease
https://pubmed.ncbi.nlm.nih.gov/23887359/
Salt, but not protein intake, is associated with accelerated disease progression in autosomal dominant polycystic kidney disease
https://pubmed.ncbi.nlm.nih.gov/32534051/
Overweight and Obesity Are Predictors of Progression in Early Autosomal Dominant Polycystic Kidney Disease
https://pubmed.ncbi.nlm.nih.gov/29118087/
Pain and Obesity in Autosomal Dominant Polycystic Kidney Disease: A Post Hoc Analysis of the Halt Progression of Polycystic Kidney Disease (HALT-PKD) Studies
https://pubmed.ncbi.nlm.nih.gov/34401721/
Evaluation of nephrolithiasis in autosomal dominant polycystic kidney disease patients
https://pubmed.ncbi.nlm.nih.gov/19339428/
Low urine pH Is a predictor of chronic kidney disease
https://pubmed.ncbi.nlm.nih.gov/21912182/
Molecular mechanisms of crystal-related kidney inflammation and injury. Implications for cholesterol embolism, crystalline nephropathies and kidney stone disease
https://pubmed.ncbi.nlm.nih.gov/24163269/
Hyperuricemia, gout, and autosomal dominant polycystic kidney disease
https://pubmed.ncbi.nlm.nih.gov/2923134/
Therapeutic Potential of Ketone Bodies for Patients With Cardiovascular Disease: JACC State-of-the-Art Review
https://pubmed.ncbi.nlm.nih.gov/33637354/
Crystal deposition triggers tubule dilation that accelerates cystogenesis in polycystic kidney disease
https://pubmed.ncbi.nlm.nih.gov/31361604/
Ketosis Ameliorates Renal Cyst Growth in Polycystic Kidney Disease
https://www.sciencedirect.com/science/article/pii/S1550413119305157
Defective glucose metabolism in polycystic kidney disease identifies a new therapeutic strategy
https://pubmed.ncbi.nlm.nih.gov/23524344/
Dissection of metabolic reprogramming in polycystic kidney disease reveals coordinated rewiring of bioenergetic pathways
https://www.nature.com/articles/s42003-018-0200-x
Uric Acid Renal Lithiasis [stones]: New Concepts
https://pubmed.ncbi.nlm.nih.gov/29393127/
Association of Vitamin D Levels With Kidney Volume in Autosomal Dominant Polycystic Kidney Disease (ADPKD)
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6542997/
Effects of cholecalciferol [Vitamin D3] supplementation in Autosomal Dominant Polycystic Kidney Disease (ADPKD) patients
https://www.sciencedirect.com/science/article/pii/S2666149721000037
Impact of vitamin D on the immune system in kidney disease
https://jparathyroid.com/Article/JPD_20150624144919
Daily oral dosing of vitamin D3 using 5000 TO 50,000 international units a day in long-term hospitalized patients: Insights from a seven-year experience
https://www.sciencedirect.com/science/article/abs/pii/S0960076018306228
Comparing Very Low-Carbohydrate vs DASH Diets for Overweight or Obese Adults With Hypertension and Prediabetes or Type 2 Diabetes: A Randomized Trial
https://www.annfammed.org/content/21/3/256
[1] Richard Johnson, MD: A Biologic Switch that Drives Obesity, Diabetes, and other Common Diseases (driven by fruit and fructose)
https://youtu.be/0dMmL6E07Ww