Inside the Re.nu program so far. Is it worth it?

77 views
Skip to first unread message

Sheryl Johnson

unread,
Aug 1, 2023, 3:13:03 PM8/1/23
to pkdiet, Diane
I signed up for the re.nu program. I'm going to write up a blog post on it, but thought I would update you first. It costs about $1,500. It is a 12 week group program. I was curious and have been watching the program from outside for many months so I thought I'd tell you what I wanted to know back then.
  • I have online meetings with a dietitian teaching my group about ketogenic therapy for pkd and how to do it.
  • I log all my food, my blood pressure, my weight, and my ketone measurements in chronometer app and my dietitian has access to all that info. She sets custom macros for me (how much protein, fat, carbs, calories...I can have in a day).
  • I signed up because I simply wanted to know if coconut milk (the fatty stuff in the can) was good for me or bad for me and the internet is split right down the middle on that with both sides bringing research, experts, and opinions. So, you really can't tell which side is correct. Right before I was ready to chuck my laptop through the window I decided to give up Keto-ing my pkd-self and just hand it over to experts. Now, I've definitely keto-ed for a year. I've lost 40 lbs. But, seriously, my blood pressure is still high and my electrolytes are still moody so I'm not on target. Going at it on my own wasn't working for me. For you, maybe. (HUGE thank you to Michael for telling me about benefits of ketosis on pkd. Many many thanks.)
  • And, holy cow! $1,500 for the 12 week re.nu program. Are you kidding? Well, they're not. It was one payment of $250 and two payments of $625. I'm on my last payment. But, after my first one-on-one appointment with my assigned nutritionist, Kelly Welsh (RD), the program paid for itself. You see, I have a nasty history of emergency room visits for my heart rate, including a fun shock-of-life exercise for A-fib a few years ago. I could kind of see from the ER tests that something was wonky with my potassium. And definitely I was coming in dehydrated, despite drinking tons of water. (As a general rule of thumb, you should try to drink between half an ounce and an ounce of water for each pound you weigh, every day. For example, if you weigh 200 pounds, it is recommended you drink 100 ounces of water if you are performing non-strenuous activities. source.) What main-stream medical never mentioned was potassium and heartbeat rate. Guess what! Since I figured that little gem out, I have gone from a normal heart rate of 90-115 to a steady 65-75. You'd think Dr. Emergency would have put that together, but no. Well, in short, I was drinking more than double the recommended amount for my weight and washing out all my potassium and electrolytes (ah...dehydration heart problems SOLVED). So, worth $1,500 to get a pkd nutrition expert all to myself? Yes, for me, big YES. My neph didn't catch it. The ER didn't catch it. The cardiologist didn't catch it. But it's something Kelly sees all the time. I had a stroke with that A-fib back in the day, so... knowing how freaky that was, well, to me the program has paid for itself before the real classes even began.
    • My nutritionist personalizes the program to my particular issues. I'm learning with a pack, but I'm not dieting in the pack. I'm learning a life-style of eating right designed just for me.
  • There's also the cost of the ketone monitor. It's a blood ketone monitor. It was about $50 on Amazon. No sissy pee strips here. You're going to know beyond a shadow of a doubt if your body is in ketosis or not. You will know how to measure it, how to kick yourself into it, and how to stay there happily and deliciously, without starving, for the rest of your life.
  • My first class was a fluffy orientation on how to use the apps. I was wondering what I paid for until I had that first one-on-on with Kelly. I had my first real class today. It was not fluffy. I left feeling like Rocky Balboa in those scenes where he's running up those stairs, training to triumphant music. Guess what I learned:
    • They've discovered that PKD is definitely a metabolic disease above all else (kidneys/cysts unable to metabolize glucose right).
    • PKD cysts only eat glucose. (fun fact from NOT re.nu: When your pkd cysts eat the glucose they take up water with it, increasing cyst size. So having a carb-y diet not only feeds your cysts so they can mature and multiply, it fills them with water too. Our poor hearts, trying to pump blood through those organs).
    • Not only can you simply starve your cysts to death, BHB is poison to them. BHB, Beta-hydroxybutyrate, is created in your liver when your body enters into ketosis (a state where you body switches from using carbs/glucose to burning fat instead...fat you have stored or fat you eat).
    • One of the biggest tricks to Ketogenic living is managing keto flu, which is basically electrolyte imbalance—one of my monster issues.
  • You don't have to take KetoCitra to have the full benefits of ketogenic therapy for your PKD. It's a crutch. You can behave and get the same effects. I was watching a talk by Dr. Weimbs and, if I understand right, BHB is poison to your cysts if your liver makes it and/or if you take it in supplement form. But...big but...standard BHB supplements have ingredients that can be harmful to pkd kidneys. KetoCitra  has potassium to alkalize, Calcium to bind to oxalates so they go out with your stool instead of through your kidneys, and BHB to help keep you in ketosis. It's crazy expensive it's more than half off when you're in the re.nu program. The price will hike when I'm graduated from the program. I'm giving it the ol' college try so I'm on it. (Within the last three years I've dropped from 80 gfr to 62 so I'm motivated). It was made specifically for PKD. I have no idea why it would cost so much. Greed? Money still needed for research because big pharma is not going to support such a simple treatment? Who knows. But it is what it is. People are staying in ketosis and increasing their GFRs and shrinking cysts without it too. So, in short: crutch.
  • It's a plant forward keto plan... like this: Plant Forward Keto. Not a meaty affair, but does allow some eggs, fish, and dairy...even soy, though I'm interested in how they go about doing that with the phytoestrogens and PLD growth connections. Shrug.
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. 

**I actually have no financial connection to re.nu, or reason to promote it. I just wanted to let you know what it's like for me because I've been crazy curious myself about it for months. KetoCitra does have affiliate links. You may as well use them when talking about it because it's so darn expensive. (But, again...crutch, not vital to successful treatment of PKD, just helpful.) -Sheryl Johnson

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






scott maclean

unread,
Aug 1, 2023, 5:07:50 PM8/1/23
to pkd...@googlegroups.com, Diane
I worked for for Dr Weimbs as a support person for Ketocitra (santabarbaranutrients) for about a year or so and I participated in the informational trials with researchers as the product was being developed,, regarding the price I can tell you that it is a very expensive product to manufacture (the binding of the BHB) , it is very carefully tested and they use higher end ingredients to ensure safety,, it is very kidney friendly and manufactured with safety in mind, thus the higher cost.   I have known quite a few people who have had good success with the renu/ketocitra program, it is in no way a cure but for many people it slows the progression of the disease,, the metabolic inflexibility of the cysts seem to make the cysts vulnerable to the change from glucose to ketones so the diet is quite strict and ketocitra is the supporting agent that helps out with this approach (as you had mentioned),, I have been taking Ketocitra for over a year now and sticking to low carb plant based as a diet, its a tough diet to follow but stopping or slowing progression make its worth it.

Virus-free.www.avg.com

--
You received this message because you are subscribed to the Google Groups "PKD" group.
To unsubscribe from this group and stop receiving emails from it, send an email to pkdiet+un...@googlegroups.com.
To view this discussion on the web visit https://groups.google.com/d/msgid/pkdiet/1491947781.361241.1690917176147%40mail.yahoo.com.

anthony...@fastmail.co.uk

unread,
Aug 2, 2023, 4:46:09 AM8/2/23
to pkd...@googlegroups.com
Dear PKDIET 

The short reply to a long mail from me. Two years ago I went on a Keto with a meat diet, with intermittent fasting. I did it forweight loss as over time I had accumulated 101 kilos and it was telling me to do something about it. High cholesterol, calcified artery in my leg, etc. 
A year after my diet keto citrate appeared with its clams. I am TXP yet still have PLD but not bad. At the time I had to find keto supplements to see if anything would happen taking them. Might get some function back?

Anyway, that was then and now I calmed down on the weight loss part, being 90 kilos. And losing that was almost as easy as swimming. Cholesterol became normal, for the first time since TXP. I now often get a BP reading of 130 over 80. The arteries unblocked. 

The downside is or was, muscle bulk loss. I have to work harder in Tai Chi with weight pushing. 

I can not report if my old kidneys are any better as I did stop taking Ketos as I was losing too much weight. Yet several large usual cysts did not show at this year ultrasound check!

I have also since found out that the so-called meditarainian diet can be just as effective with weight. Scientific study!

Yet the ketones for managing glucose and cysts seem very viable. The Citrated Ketos are on sale via FB is a bit expensive for me and in the USA, I am in France, but maybe not if I was in the battle to save function.

It is good to see this surface in this group. 

All the best Michael 

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

Sheryl C.S. Johnson

unread,
Aug 5, 2023, 10:29:09 AM8/5/23
to PKD
That is wonderful information!!! So good to know. I've been in ketosis for about a year now. I was feeling fantastic until a concussion in January. The concussion made me slow and sluggish, along with other side effects. I couldn't get my energy back. In the Re.Nu program, with pretty much just reducing my water (I was drinking too much), adding KetoCitra, and increasing my fats...by a ton, I have finally come back to my pre-concussion energy levels. I'm not sure the balance of what is helping the most (The fats, the KetoCitra, or the decrease in water?). I drink my keto citra with 1/3 cup of Thai Kitchen Coconut Milk (from the can), 2.5 cups of water, 1/2 tsp vanilla extract, and 3 drops of stevia. I do it twice a day. I crave it always, so my body loves it.

My blood pressure is down too and I can't tell which part did the magic. Without BP meds it was 157/110 two weeks ago. Today it was 139/91. Not perfect, but it's just the beginning of the program and I will take it. 

I did watch a video of someone with a success story of halting the decline of their gfr by only taking KetoCitra and keeping their Standard American Diet. I'm not sure how that works. But I have seen many more videos of people increasing their GFR scores, sometimes by 10, using a ketogenic lifestyle.

I am beginning to suspect I actually need the KetoCitra crutch. Yesterday I ate 33 plant forward carbs and had both servings of my ketocitra. Today my blood ketones were .7. I was aiming for at least 1.0. I was still in ketosis, but I think without the KetoCitra I would not have made it past the .5 requirement.
Reply all
Reply to author
Forward
0 new messages