If not Albutrix then what?: I'm considering... - Kidney Disease

Kidney Disease

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If not Albutrix then what?

Skeptix profile image
Skeptix

I'm considering giving this very low (veg) protein diet + keto supplement a whirl to see whether it has an effect on the numbers.

Lee Hull has his keto supplement Albutrix with the selling point being its low calcium as well as low nitrogen.

But it doesn't appear to be cheap at $179 a month. Then again I've no idea what such supplements ought to cost but $6 a day strikes as pricey to my unpractical eye.

In order to sense check price, does anyone know of a comparable ketoacidanalog supplement (even if without the 'unique selling point' of low calcium).

Cheers

51 Replies

There is no one size fits all diet for CKD. Hull seems more interested in selling books and supplements. No supplements should be taken without first consulting your nephrologist. Your nephrologist and RD should be the professionals to guide you to an appropriate meal plan.

Skeptix profile image
Skeptix in reply to Mr_Kidney

Having read the book I would have to disagree. Snake oil salesmen have a certain m.o. and his doesn't match.

There is no harm in making money per se so I wouldn't exclude his view just on that basis. The site is more commercial but the book most certainly isn't.

As to taking something under medic supervision. I would agree and Lee stresses absolutely this all be done in teamwork with medics/regular bloods.

But my nephrologist appears to be asleep at the wheel and RD's as rare as hobby horse poo (in Ireland).

The NKF nutritional guideline update for 2020 speaks of vlpd + ketosupplementation as showing most promise (eg. versus a low protein diet) for staving off ESRD.

The vlpd was found to preserve kidney function (ckd 1-5 non diabetic, non dialysis). Lee was writing about this very thing a year earlier.

Reading around it seems that vlpd + keto is a relatively new approach that may not have filtered down to general practice. I'd be pretty darn sure my nephr would look blankly at me if I mentioned it.

NKF speak of the lack of RD's specialising in low and very low protein diets. So there is problem being unable to rely on the medics..

They also mention ketoanalogs as being expensive. Which helps justify Albutrix price perhaps.

In a world awash with supplements with the word keto attached, I'm just trying to gauge whether Albutrix over priced. As it is, I can't find anything that is clearly a ketoanalog!

Mr_Kidney profile image
Mr_Kidney in reply to Skeptix

Hey, it's your money and your health. Best of luck.

Skeptix profile image
Skeptix in reply to Mr_Kidney

Indeed. I was editing as you wrote.

Given the promise of vlpd + keto (according to the NKF), along with lack of RD's familiar with vlpd (according to the NKF) one has to dig for oneself to a degree.

Which is what I am doing.

Have a look at KDOQI Clinical Practice Guideline for Nutrition in CKD 2020 update

Guideline 3: Protein and energy intake.

Page 10 and 11

Mr_Kidney profile image
Mr_Kidney in reply to Skeptix

If this program was beneficial for everyone it would be touted by every doctor, and kidney organization around the world.Again, best of luck.

Skeptix profile image
Skeptix in reply to Mr_Kidney

Would it?

The NKF themselves say a vlpd is something you are not likely to encounter when you walk into a typical RD.

Despite the science pointing to its great promise.

One of the actions they stress is getting RD's up to speed. And if RD's aren't up to speed, what chance nephrologists? This is the latest science - why would you suppose the kidney world would instantly follow the latest science when the NKF themselves talk about having to get everything up to speed?

By and large, all Lee Hull is promoting is vlpd (plant based, which the NKF also appear to agree with) and ketoanalogues. He doesn't say its suitable for everyone. He just says to give it a try and see if, after 90 days, the numbers improve

So: follow what your RD says (who likely has no expertise in vlpd) or follow the science?

Mr_Kidney profile image
Mr_Kidney in reply to Skeptix

Remember the information we receive from the National Kidney Foundation, American Association of Kidney Patients, the American Kidney Fund and others doesn't cost us, like a book purchase, and those organizations aren't selling you a $180.00 per month supplement. What do you have to pay in Ireland or elsewhere for the information?

Skeptix profile image
Skeptix in reply to Mr_Kidney

The information received from the NKF whilst free isn't, it appears, the information you will receive down at your average RD or nephr, neither of whom are free (unless you want to wait years in public health in Ireland)

The book, given the size of it, isn't that expensive and does distill alot of the information. There are tonnes of studies crammed in which help explain WHY a vlpd is indicated as best approach. That detail won't, I'd warrant, be delivered on a plate by the NKF or anyone else.

Someone's done the digging on your behalf .. is one way to see it. As the apostle Paul says, the oxen who turn the mill stone ought get to eat some of the grain :)

I asked the question up top as to the price of alternatives to Albutrix. They are required on a vlpd. The NKF merely say they are 'expensive. So what are the costs?

I think you're reacting in an understandable way, but are not looking closely enough at what you're objecting to.

Making money from a discovery isn't in itself a crime. Sure there are snake oil salesmen but you have to assess whether THIS is a snake oil salesman.

Suppose you followed NKF advice and embarked in a vlpd. Then went and found 'expensive' ketoanalogues cost $200 a month. Would you have such an objection to someone who dug up the science a year before the CKF? Someone who put what he felt was a better ketoanalogue on the market? Would you buy his slightly cheaper analogue?

-

Allen Carr wrote The Easy Way to Stop Smoking' back in mid 80's. A single copy of the book went around my family, friends and family of friends like wildfire. I counted 15 people I knew who quit reading that single copy before I lost track of it.

Bar for dummy me, no one I know fell back into that pit (I escaped again, upon re read). The book is a bestseller, millions have quit. Famous people promote it. Its got 4,500 x 4.5 stars on Amazon.

There has been been single study done on it. 2018 in Ireland. One lousy study.

Allen Carr's method was compared to the standard issue treatment you'd be pointed to by a pcp (GP) which involves nicotine replacement. It has twice the success rate at day 1 and year 1 ... compared to NRT based methods.

One lousy study.

Allen Carr sold many books, videos. He set up centres all around the world where you could do the contents of the book in a few hours in a group setting. He died a wealthy man from his method.

So what if he made money? Money from a method that mainstream medicine still have their heads in the sand over?

He saved it bunch of lives in the process.

One has to be careful but with the NKF guidelines following what Lee already published, I'd err on giving him a fair hearing.

I don’t think it would be “ touted” . They take decades to catch up with research. Medicine is just too big and unwieldy. If we live long enough, we’ll see this reach filtering through in 30 years or so.

Skeptix profile image
Skeptix in reply to SkiingSailor

17 years appears to be it on a quick Google.

Kbressler profile image
KbresslerNKF Peer Mentor in reply to Skeptix

Change nephrologist.

Skeptix profile image
Skeptix in reply to Kbressler

Whether or not this vlpd is fruitful (it will be full of fruit, that's for sure), a change is needed. Gfr mid thirties and business as usual (do nothing) doesn't sound convincing anymore.

SkiingSailor profile image
SkiingSailor in reply to Skeptix

I agree. Lee Hull’s book is fantastic and it’s changed my health for the better ! His book is superbly researched.

Why doctors become doctors and aren’t interested in their patients health is a real issue, not just in the U.K., it seems. I haven’t tried his Albutrix either as I too thought it too costly.

Good luck with finding an alternative.

Bassetmommer profile image
BassetmommerNKF Ambassador

Hi Skeptix, If you eat a well planned diet, you do not need the supplements. I know you said you are going to the dietician. Wait until then before taking anything. And yes, it is expensive and that's the point. Although Lee Hull has some great suggestions. Its all about the money and supplements.

As to whether this program is up to date and nephrologists aren't... This book has been around for years. And I have yet in the vast connections I have with pharmaceuticals and the kidney world heard anyone toot his horn.

What they all are tooting now is plant based, low protein. There is a ton of evidence based research on it.

Mr. Kidney made two very valid points. If it was the great savior of CKD, everyone would be on it. And its your money.

Try first to switching to lowering your protein and adding in more fruits and veggies and no supplements and see how that goes before you lay out all the money.

Skeptix profile image
Skeptix in reply to Bassetmommer

I would certainly listen to a dietician. But have been told it could take time (it's specialised and they are typically busy with end stage patients. And that's private rather than public!)

The very low protein diet appears in the 2020 NKF guideline as doing more than just a low protein diet - in that it appears to slow progression more than 'mere' low protein, which is obviously desirable.

And supplements (expensive, they say) are essential in is vlpd (they say). As I said to Mr. K, the NKF point out that few RD's will be up to speed on vlpd and recommend progress be made there - given the science pointing to vlpd (and a pure plant based vlpd seemingly being given something of a nod)

I gather Lee's book came out in 2019. Could be wrong but that's yesterday in terms of moving standard paradigms.

With all due respect, I cannot see the pharma industry tooting the horn of someone promoting a vlpd, for obvious reasons. And, as my point about Allen Carr made to Mr.K above points out, medicine doesn't necessarily shift to that which works. Even when the science shows it works.

Science and the shifting of established medical doctrine are two very different things.

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Skeptix

To your point. In 2018 I was prescribed a diet by the same dietician I saw in 2021. So much had changed. I was not supposed to eat whole grains, limit my high potassium foods and phosphorous. Things like oatmeal were a big no no. She said chicken and limited fish were fine. I was eating eggs 4 times a week and she was fine with that too. I lost weight my numbers stayed stable. Then they did not. I think it was a combination of Covid stressors, lack of the fresh veggies and not getting out. So went back for a tune up in Jan 2021. All whole grains are allowed. No meat, no chicken, no eggs, no dairy, and the list of was not allowed was if it was animal protein it was a no no. Again, lost weight. But the biggest difference was that my GFR went up. Just a couple of points but it was upward. My other numbers looked good too. And even with the addition of some new veggies, higher in potassium added to my diet, my potassium and phosphorous went down.

Great news !

Skeptix profile image
Skeptix in reply to Bassetmommer

When you say numbers were stable, did that mean 'out of normal range, but stable'.

You happen to know what she was trying to achieve with no grain and what's changed to allow grain (I mind giving up bread more than I do meat)

Good news on gfr

👍

Bassetmommer profile image
BassetmommerNKF Ambassador in reply to Skeptix

Hi SkeptixMy GFR and creatinine stayed pretty stable. I had a few downward turns after and GI infection and then just not being careful

The limited whole grains were because of potassium and even more so, phosphorous. Now they know that you only absorb about 1/2 the listed phosphorous and they are discovering the same thing with potassium in plant based foods. For example, oatmeal has 130 mg of phosphorous. You only absorb 40-60% of that so now it is maybe 50 mg of phosphorous. There is a lot of research out there on this.

I eat bread.... I bake my own whole wheat, rye and Italian. I eat 2 low carb and low protein wraps everyday ( made by Tumaros) and I enjoy a pita with my salads. So you certainly do not need to give up bread. Just get the best bang for you buck on what ever you eat. Most fiber, lo protein, and less crap ( chemicals).

Michael__S profile image
Michael__S in reply to Skeptix

If you are ready to commit to $180/month then I don't think you would have any problem finding and paying for a renal dietician online, even if he/she is out of your country. I live in Canada and most appointment short of pre and post surgery are done over the phone at the moment. There was a Power Lifter who was 19 and she had all her nutrition and coaching was done online. This was pre-Covid and she has a world record of some kind.

Skeptix profile image
Skeptix in reply to Michael__S

Now there's lateral thinking! Why on earth would I need to stick with an Irish dietician just because I'm Irish and living in Ireland!

I suppose the question would be: what do they make of his thesis: to fight against multiple factors shown scientifically (apparently) to add to kidney decline.

His diet book arrived today in the post and it looks tight!!

itzmich profile image
itzmich in reply to Skeptix

To me it sounds like you've already made up your mind. Let us know how it works for you.

Skeptix profile image
Skeptix in reply to itzmich

Still reading around. But I'll take the plunge and do more or less for the 90 days and see what happens. Erring on not undercooking the nutrition but keeping close as I can to core diet (no meat/little dairy). Will update in time.

Michael__S profile image
Michael__S in reply to Skeptix

Reading your other comments about the nephrologist recommending to do nothing then yes I think that you might want to look for a new specialist, or at least a second opinion. And I am still surprised that you can't find a renal dietician in Ireland that would support your will to experiment with a vlpd diet. Whatever you do make sure that you have the proper support because so many things can go wrong or more likely need to be fine-tuned.

Many folks turn to Braggs as a more affordable liquid amino acid supplement. The only problem with it is that it's pretty high in sodium. And btw, if you follow Lee Hull's suggestions to avoid dietary fats like olive oil, etc., you'll find yourself dropping weight like a rock. If you don't have the weight to lose, it'll be a real struggle maintaining your weight, and if you're trying to maintain or increase muscle mass, you're gonna have a difficult time with that as well. :(

Skeptix profile image
Skeptix in reply to Marvin8

Having never paid a blind bit of notice to diet in my life (I'm the same weight at 57 as I was at 27 so never needed to) this is all news.

Can you not just add calories to keep weight ?

(I'm 2/3 up the bandwidth for ideal BMI and Lee cites research indicating best to hit top of ideal BMI band. So can't afford to loose weight.

cocoa69 profile image
cocoa69 in reply to Skeptix

My husband was recently diagnosed and I read Lee's book. It sounded good so we decided to try it and sent for the first bottle of pills. We decided to try cutting protein to the RDA (he often ate 2-3 times as much in a day) and maintain 2000 calories while waiting for the pills to come. What we found is that it's very hard to maintain 2000 calories even just cutting the protein to the RDA. If you have lee's book you"ll notice he often makes up the deficit with sweets and drinks. Also there is a ton of fruit and some desserts. I'm diabetic and my husband's sugar went up for the 1st time. I also spoke to a physician whose mother has CKD and he had heard of this plan. he said he sees people who try it and get sick. Then they have to get well and start over. I guess they probably get sick because they're not getting enough to eat and not doing the plan properly. Two days ago my husband looked terrible. He had dark circles under his eyes and was pale. We have decided to try increasing hydration (we live in S Fla and my husband is usually outside all day), cutting sugar, starting statins, and maintaining RDA protein while greatly increasing salads and vegetables. I'm not knocking the plan, but I must say it seems very, very difficult. We are keeping it for plan C. I think it would be much easier for someone with weight to lose.

I like Lee Hull and don't think he's a huckster. He's a businessman, sure, but there is so much passion and detail in his books. I think he is a "true believer" more like.

I don't believe that all doctors are up to date with the latest studies. Fortunately, I'm not getting any pushback for my plant-based diet (more like a shrug from one doctor, but hey, I'll take what I can get!). I've heard testimonials on a Kidney Facebook group from multiple people saying that they were never told they had anything wrong with their kidneys until they were in Stage 4 or 3b. The doctors were aware that tests were showing their kidney decline, but never thought to say anything. So yeah, I don't think all doctors are all on board with the latest and greatest.

I tried the Albutrix (but limited to half a dose a day, for financial reasons). I'm recently diagnosed with Stage 3a, and so far so good, my labs don't show any ill effects. I cannot say whether I'd recommend Albutrix to others (because I'm not a doctor) but I'm still taking a half dose a day most days and will continue to do so. All I know is that my labs (in particular Albumin) have been good and steady.

Also, since starting this diet, I have lost weight, but not drastically. My doctor is pleased with this but advised me to not let my daily calories get too low. (I could lose some pounds so I assumed weight loss would be good, which it is, but not too fast!) Sometimes I use oil in my food, but am trying to wean myself off of it. I do eat avocado regularly, so I get calories that way. I don't have any potassium restrictions (or any restrictions really, aside from 2000 mg sodium).

Totally in agreement with you. I’ve been following him - without supplements- since Nov 2020. Feel great, look really well and dropped 14 pounds, but no more. My body weight is the most stable it’s ever been in my adult life ( I’m 58) . My eGFR has gone from 51 to 73 , so I’m all round delighted that Lee Hull has done all the leg work.

Skeptix profile image
Skeptix in reply to SkiingSailor

No supplements? What you doing gr/kg protein wise? You just consuming more plant protein to obtain that level. I guess your kids handle it with that gfr..

Encouraging all the same

Skeptix profile image
Skeptix in reply to Tuolumne

I see he regularly uses butter in recipes (as an alternative to some or other brand on non dairy butter). Maybe he does allow oil?

When you say you're not on restrictions are you following his diet (which has restrictions for lots of things or a combo of your dietician/doc and his very low

protein diet?

How do you make up the protein on half albutrix, just more plant protein?

Cheers..

Tuolumne profile image
Tuolumne in reply to Skeptix

My GFR hasn't improved (yet) but it's still early days. My doctor says it'll improve when I lose a little more weight. (I'm still fat.) But she also says that I shouldn't cut my calories too much. So it'll be slow going.

I try to follow Lee Hull's diet but I doubt I'm doing it perfectly (though I have been quite strict about no meat, which hasn't been a struggle since I was a vegetarian for many years before this).

I'm also dipping my toe into another (somewhat similar, plant-based) kidney-friendly diet. Their philosophies kind of overlap. Both diets tout plant-based, gluten-free, low on grains and legumes. I also try to limit my intake of "inflammatory" foods (even though as far as I know I don't have anything autoimmune going on), like tomatoes and potatoes, though I have them once in a while.

I think Lee Hull allows a little bit of fat (I know his cookbook mentions a type of margarine) while many plant-based diets (not just ones for kidneys) preach against any kind of oil. I'm trying to limit my oils now, as I was told my cholesterol was "borderline" several months ago.

My goal every day is ten 8-oz glasses of water (or I'll allow chamomile tea), 2000 mg salt, 3500 potassium, 1000-ish phosphorus (because phosphorus in plant-based foods isn't absorbed as well, the number can be a little higher than the RDA), 30 g protein from food (and then add approx 18 g from Albutrix). I also keep track of my PRAL and always want it to be in a negative number. I keep an eye on grains and legumes but to be honest, if my PRAL is good, then I don't get too vexed. I think Mr Hull wants us to really keep an eye on our ratio of grains and legumes and as a rule, I don't overdo it, but if one day I have a little more but my PRAL is still good, then I don't fret.

I believe there is a LOT more room for improvement in how I am eating. But, since my doctor has given me NO restrictions, other than at least 8 glasses of water and less than 2000 mg of salt, hey, whatever. I don't think I'm "hurting" anything. But right now my goal is to improve my GFR and therefore I'm working on more discipline.

My doctor wants me to have 60 g of protein a day, but I don't feel comfortable getting all of that from regular food. Hence the Albutrix. I "negotiated" my grams of protein down to 50, lol. My doctor said my labs are still good so they didn't argue too much about 50 g of protein. I'm a middle-aged non-athletic woman and I seriously doubt that I'm going to faint away with "only" 50 g of protein.

Skeptix profile image
Skeptix in reply to Tuolumne

Thanks for that

I must re read (if anything was said by Lee) on cholesterol. It seems well established now (research wise at least) that dietary cholesterol has little if any influence on serum cholesterol. What's the reason for limiting dietary cholesterol in that event.

(It would be ironic if Lee, who disses 1950's thinking re: diet, was following a debunked view of cholesterol!)

What gr protein /kg you manage to convince your doctor to.let you work at, if you don't mind me asking.

Tuolumne profile image
Tuolumne in reply to Skeptix

My goal is 50 g of protein a day. The doctor didn't fight that too much, since my most recent labs were good. I remember specifically asking about my albumin, which was comfortably good. (I think I recall Mr Hull specifying a number range that we would want and my albumin was there.)

The last time I had my cholesterol checked was over six months ago. They haven't tested it since I went on this special diet. Nobody bothered to even tell me for several months that it was highish in the first place! I just learned it by happenstance. For all I know it's perfect now. Before I discovered my kidneys had problems I was eating poorly (thanks to the pandemic in part) and had gained some weight. That may have been the only culprit.

Skeptix profile image
Skeptix in reply to Tuolumne

We'll see whether diet can turn around my mid thirties gfr. My nephr didn't so much as suggest lifting a finger this last 7 odd years since diagnosis and still doesn't ("lower red meat consumption" was about it)

But not to even mention CKD 3a??!! That's medical negligence surely?

Tuolumne profile image
Tuolumne in reply to Skeptix

One person on this Kidney facebook group said just this. Her GFR was in the 40s, the doctor said nothing. It was only when she was in Stage 4 that they mentioned something. She is relatively young (in her 40s) and was being told that she won't live a normal lifespan. Imagine her despair. This vegan diet has helped improve her labs and has given her hope. I have every confidence she'll be okay.

I absolutely believe you can improve your mid-thirties GFR. ABSOLUTELY. There have been too many testimonials, from too many different sources, that talk about the benefits of plant-based. But if all it does is keep your GFR from going lower, it's still a win. But so many people have said that their GFR improved, sometimes drastically. (Other times the improvement is gradual, but hey, who cares as long as it's getting better?)

Right now I feel no symptoms from my kidney disease and don't mind my new diet. Sure, I miss cheese, but I am happy about my weight loss (I've even started buying clothes in a smaller size, yay!). I really, REALLY want to improve my GFR, but if for the rest of my life it never budged (but never got worse), and as long as I don't feel bad, it doesn't really matter.

One thing I have heard is that people will get their GFR up, think everything is "normal" again, return to their "standard" diet (with meat, cheese, etc) only to undo everything and maybe even be worse off than before. It appears this type of diet is for life. But hey, it's a small price to pay, considering the alternative!

Hmmm...isn't most everyone a huckster in some form - particularly in capitalistic societies? I've often noticed that today's pharmaceuticals are often based on natural substances that can't be produced fast enough or dense enough so chemical clones are made to calculations to do the trick and then "sold" to you at breathtakingly high prices. Big money in big pharma. As for renal dietitians, our experience is that very few know how to meld the renal diet to other needs, e.g. diabetes, a patient may have. If you feel comfortable in pursuing this avenue, and you've researched it thoroughly, and you're careful in monitoring your health and labs frequently....then it's your decision, in my humble opinion. Let us know your outcome.

Skeptix profile image
Skeptix in reply to Darlenia

My name tells you about my default outlook. That would see me suppose pharma is like my industry, food.

Products with a perception of health, if they make more money than products which are actually healthy, are what the CEO is duty bound to produce.

But I'm not cynical. It's a matter of how it 'smells'

Marvin8 profile image
Marvin8 in reply to Skeptix

If you don't have anything nice to say about something, come sit by me. ;)

I want to reply because I have been greatly helped via Lee Hull. My gfr suddenly dropped from 30 to 22 last year. NO help from 2 nephrologists nor gp. I am a nurse so I understood most of what I read in his book and it all made sense to me. I do what the science says. I also take 6 Albutrix a day. My gfr is now 28 and improving. My nephrologist has no words because typically patients don't get better they progress on to dialysis. THANK YOU LEE HULL FOR SHOWING ME HOW TO SAVE MY LIFE!!!

Totally agree with you on doctors, they really seem to not care less. Delighted for you that Lee Hull’s research is working for you as well and from such a low eGFR. My GP couldn’t bring herself to acknowledge that I’d done the right thing by following him either !

There is that research I mentioned, that recognizes disconnect between now-research and paradigms - which are decades in the making. 17 years to get from back room to front lines.

Unless someone has really kept a abreast of the research they'll be banking on what they learned when THEY were being taught.

Everything has inertia to change. Its normal. I myself have no interest in the latest greatest practices and methods in my field: what I learned and applied since 20 years ago serves me well. It just might not serve my employer as well as the latest greatest.

Why would I expect a 60 year old nehpr or GP to be different to me. Not criticism, just obvious observation.

I passed through a throng of young med students last visit to my nephr. She, unusually, was in scrubs (she doesn't do surgery). It occurs to me she could have been teaching those students. And telling them there was nothing to advise a stage 3 ckd-er other than maybe limit the red meat..

That's how it takes 17 years.

Hi, Skeptix. I'm a little late to the party, but I read Mr. Hull's "Stopping Kidney Disease" book and I am pretty much following his plant based diet plan, although a little loosely. I have given up ALL types of animal/fish flesh and only have butter once in a while and occasional Kirkland Signature (Costco) protein bars which are milk based.

Anyway, my last eGFR from a couple of months ago was 62, before that it was 58 three months previously (5 months ago). I started with 42 a couple of years ago.

But... my wife, who started with an eGFR of 67, is now at 91 as of a couple of months ago... yes, 91! Her previous eGFR was 89 three months previously (five months ago).

We are not on Albutrix. So in my opinion, Lee Hull single handedly saved a lot of lives through his incredible medical research. We all could have written "Stopping Kidney Disease," but it took Mr. Hull to do it.

I would stick with Mr. Hull's impeccable medical research. And if you can afford it and you think you need it or can benefit from it, I would try Albutrix.

Skeptix profile image
Skeptix in reply to Beckett24

Welcome to the party and thanks for that info Beckett.

Coupla questions if you'd oblige.

At what point on the 42-62 journey did your diet significantly change?

Ditto question re your wife? That's some transformation. All diet led?

If not on Albutrix, how are you getting your protein? You got a gr/kg body weight figure you work off?

I can imagine making the diet a lot easier by allowing a bit of slacking here or there. Take the diet-Nazi element away but without getting it.

Beckett24 profile image
Beckett24 in reply to Skeptix

If I recall, I went from 42 to 58 after three months. During the same three months my wife went from 67 to 86. And before our first set of labs after starting the Hull program we split a large Carne Asada burrito that someone gave to my wife for free during an Arts/Crafts fair! What are the odds? LOL

It was all diet. We don't each that much protein -- about 40-50 grams per day and our Albumin (which Mr. Hull considers an absolute critical reading of protein intake) is usually 4.3-4.5. Mr. Hull considers 4.5 ideal. Remember, most Americans eat more than twice the protein they need which does not help the kidneys.

We also eat Vegan protein smoothies made with Vegan protein powder bought at Costco and those Costco protein bars. Also, don't forget to drink tons of water.

Skeptix profile image
Skeptix in reply to Beckett24

Is the Costco another form of plant protein and part of the 40-50 gr plant protein per day?

What is it that has you not follow the 50/50 split plant/keto recommendation? If not the price, that is..

You doing a gr/kg body weight thing?

Michael__S profile image
Michael__S in reply to Skeptix

Costco is just another store where you can find item in large quantity and well priced for its quality. That's where I buy my almonds, fruits and olive oil for example

Beckett24 profile image
Beckett24 in reply to Skeptix

The Orgain vegan plant based protein powder at Costco is just by far the best deal in pricing, especially when it's in the Costco coupon book for $6 off. The Kirkland Signature protein bars are cheating, but convenient. Both make up our 40-50 grams per day.

It's just too much work to follow the 50/50 split plant/keto recommendations which I totally forgot about! LOL

I once did the gr/kg calculations based on the lower end of protein intake (0.6 grams/kg) and came up with about 50 grams of protein per day.

We gave up so many of the foods we love (especially meats - from beef to bacon), that this is the best we can do on a long term basis without totally suffering.

We bought Mr. Hull's Stopping Kidney Disease diet guide cookbook, and about the only dish I can handle from it is a fruit smoothie because it is so incredibly restrictive. LOL

I just think it's better to follow Mr. Hull's eating plan about 85-90 % of the way than going back to our old way of eating, and the labs show it.

I wrote (to) Lee Hull posing the question: why so expensive and what comparative ketoanalogue coats so much more (he says in his book).

He (or his site) came back quickly explaining that it's drug-quality production and that costs. Being in production myself, I can appreciate the high cost of relatively low quantity products. Its only mass production that makes things cheap.

He gave ketosteril as an existing equivalent and its costing perhaps $400 a month. Hard to find anything on price - there seems to be a hell of a pot of Indian sources and given that countries problems with corruption, I would be taking India as a source with a pinch of salt. Seems to cost about the same as Albutrix in India in any event.

What does crop up is much mention in pubmed type sources of the positive effect of ketosteril + very low protein diet. Time and again, delay in progress in CKD, better to start at stage 3 than stage 4, etc.

Not open/shut on Albutrix cost but certainly plausible that it's not a rip off!.

Just be careful. I have had an eGFR of 14-21 since 1996. There have been numerous “cures” in the 25 years I have dealt with stage 4 CKD. Regardless, of the validity of the research, the knowledge of the individual, or the newness of the plan they are all one size fits all. What works for you may or may not work for me. Maybe you have a thyroid issue or diabetes when I don’t. Maybe I have a different set of chromosomes than you do. Whatever, just remember we are all individuals and respond differently to both medical treatment and diet. That is why it is so important to be your own advocate and to seek out the best providers possible to those of us who don’t have Steve Job’s type money.

I noticed that there were several comments about folks docs or nephrologist “asleep at the wheel.” If that is the case, find a provider who is not asleep at the wheel. Find one who if they don’t know about what you are talking about with the diet plan will do the research. I am from the US so not familiar with the European style nightmare...er....healthcare system. However, I would assume there are provisions for changing docs/nephrologist if wanted. I am part of the VA health care but in a rural area so a lot of my specialists are not part of the VA system. Yet, I have had an issue with a doc and requested a change and was granted that change. I applaud you folks for all the research and taking personal responsibility for your care as that is a hugely important step in what we are faced with. However, allowing a substandard doc/nephrologist to be responsible for your care will almost cancel out the benefits of what you are doing.

Anytime you are prescribed a new med, have another major issue/illness or surgery or simply as you age you need to have the leaders of your care team (nephrologist) ensure that whatever you are putting new into your body, or whatever has changed with your body is okay to take/do/eat without blowing out the remaining kidney function you have left. I was 29 in 1996 and relatively healthy except for the CKD. Now I am 54 and have osteoarthritis in nearly every joint with 22 surgeries from 1998-2014, HBP, high cholesterol, high triglycerides and peripheral neuropathy. Lots of changes in 25 years and I have had several situations where I had to involve my nephrologist in situations to not give me NSAIDS or certain antibiotics even though the orthopedic docs who were primary care knew I had stage 4 CKD.

My original nephrologist who took care of me for the 6 months I was in ICU in 1996 passed away this year from cancer. He had not been my primary nephrologist in several years as I had moved from that city. However, I was blessed to have such a competent and caring doc by luck of the draw. He did not start dialysis when 90% of others probably would have a preserved what little kidney function I had left and the knowledge he shared with me gave me the benefit of being my own advocate from day one. He was a hard one to replace but I found one almost as good.

My point is, just be careful what you do and put into your body. For those of us in this situation knowing what we will all face and knowing there is no cure, we are all susceptible to the great hope that claims of cures can make. I have seen many come and go in my 25 years. Some are harmless but some have caused some people like you and me to need dialysis and transplant much sooner than would have been necessary had they not participated in the newest cure. Get a great care leader you can trust and that puts the effort into your care you deserve and let them be your guide through this journey.

🙏

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