Albutrix made me feel more ill every day I took it. At 17 days I really felt like I was dying, so I quit it and improved after a couple of day. About 5 days later I tried it again at two tablets a day, two days in a row, and again became very ill. About a week after that I learned that while taking Albutrix and following the plan, I had gone dangerously alkaline, to the point I (WAS) facing dying. This has been so devastating, and depressing. I had such high hopes for extending my life with Albutrix, and instead almost lost it. I am stage 3b, but getting so ill with Alkalosis really tanked me. I have had to work at making my body more acidic in order to recover. I am going to check into vegan keto, or at least vegan low carb because when I went vegan several years ago – without Albutrix – I did not develop Alkalosis, so I still believe in the Vegetarian/Vegan diet. I quit the vegan diet years ago because I developed low albumin levels, and did not at that time really understand how to get adequate protein from plant sources.
At that time I was doing the Vegetarian diet for health: my doctors had not yet told me I had kidney disease, though looking back, all my labs showed I did have kidney disease for the past 20 years.
Since I quit Albutrix I have a very difficult time getting my protein levels high enough before I max out my calories, and am eating Tofu to get (close to) adequate protein. Until I get things worked out I am returning to eating (some) animal protein again. (I do not have protein in my urine.) I will be using Cronometer to track my protein and other nutrients.
I just bought Steven Rosanky’s kidney disease book, and will work at following his plan. I hope I do better.
I have tried, without success, to learn about how Albutrix is manufactured and what it contains. From everything I can calculate the amino acids in Albutrix are (taken from something) then processed to such a level that they are essentially chemical amino acids. I do not know this for sure, but in my research that is all I can come up with. All I know for sure, is that it made me extremely ill. I wish manufacturers would make it possible to know what is in their product, and how it is processed.
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Eating protein does little to affect the serum protein levels. If you were losing protein through your urine that is what is tanking you blood levels. But eating more protein does little to affect it. Unfortunately like you know low blood levels increase mortality rate. So is an indicator for progression. I would get with a doctor and discuss this. I can't stand the sight of mine either because I was told either.
Actually, what you say is only partially true. If a person is NOT getting enough protein, and that is why their albumin levels have gone down, then increasing protein intake can improve albumin levels. I know this for a fact because I have a dog who also has a type of kidney disease (hereditary) and when his albumin became too low we changed his food a bit to increase his protein, and soon his albumin levels were back within range. -- The same thing happened to me years ago; when I went vegetarian/vegan, my albumin levels became low. When I went off the vegetarian/vegan diet, and ate more protein, my albumin levels returned to normal.
I ordered it, but it is not here yet and I get the address to return it. Thanks for sharing. Sure it works for some people. My renal dietian sighted it. SMH.
They 'claim' you can return it within 30 days, but they make it very difficult to do so. They give NO return information at all, and you need to email them requesting the information on how to return it. They can then take several days to answer you. Also, they have a phone number to call about returns, but when I called it was a one woman answering service, who then relays the message to the company, who then has to get back to you with the information on how to return it, which again, can take several days. I ordered mine on September 14th (and received it about September 20th), and was using the first bottle I had previously bought when I became so ill on it. I have been too ill to contact them until now, and if they procrastinate then the window will be closed. Before that happens I will contact my credit card and 'contest' the charge. I am quite upset at how this company operates.
NEVER NEVER take anything without your nephrologist approval! It doesn't matter if it's an antibiotic prescribed by your PCP or something OTC. We are all different and what works for one may not work for you. In fact some "drugs" can do more harm.Look on the internet, there is even an entry about "Albutix the scam."
I think you are just lucky that you didn't wind up in the hospital. Sorry, the "mother" in me just came out
Next week is my 22nd Transplant Anniversary and I still run everything past my nephrologist before putting it my mouth. I think always getting the OK is why my "transplant" is doing so well.
Please know - there is no cure for CKD. Once damage has been done it can not be reversed. That being said, there are some on this site that have been able to stabilize their CKD by going on a kidney friendly diet. This is from eating the right food....not from taking an internet claim - "drug."
Please, do not take this drug. Ask your nephrologist for a regimen you should follow. If need be, switch to a different doctor.
My nephrologist is worthless. She does not answer my questions even when I ask. I have specifically asked for guidance on diet, and all she will say is, "Just eat healthy." Nephrologists are virtually impossible to get in our area, especially for those on Medicaid, as I am. Doctors have a 'right' to refuse Medicare and Medicaid patients, and they often do. And, this p*ss poor nephrologist is the only nephrologist who would even take me. So, basically I have been left on my own to take care of my health and my kidneys. The only 'help' I get is yearly labs from the nephrologist, and if several months before that I get a complete set of labs from my PCP then the nephrologist threatens not even to do any labs on me at all for my yearly visit. A couple of times I did get more than the 'yearly' visit, when my kidneys showed to be in crisis when I got the yearly labs at my PCP. I am between a rock and a hard place, essentially without any medical care to speak of.
Try WebMD on the internet. 5 years ago we moved from WI to WY. Since I have had a transplant, I needed a great PCP and Nephrologist, especially there isn't a transplant center in Wyoming. Thru webmd I did find 2 great doctors. There are even reviews by patients. Might be an option for you. I know there is a commercial on TV now for zocdoc. I haven't used this but keep it in mind
LuvSmallDogs illustrates the problem with your (seemingly wise) advice to run things by your nephrologist. It presupposes the nephrologist is any good!
If they are not good. If they have never heard of the 2020 NKF guidelines. If they don't specifically know about Albutrix and what it contains and the principle of use .. then why would they say 'yes' to your enquiry? Wouldn't the safest thing, through potential incompetency, laziness, ignorance, fear of litigation ... be to say no?
You get a negative from you nephr in response to something they know nothing about. What'd be so surprising about that?
thats false not true go to YouTube look at the video how I beat stage 4 kidney disease by mr crafty man not only did he reverse it by eating o sugar and a plant based diet he reversed his high blood pressure and diabetis .he has proof and the v a hospital to back it up ,just watch the video I don't think he is lying see for yourself .these doctors don't care they tell you bullshit almost all of them several doctors have said all of his issues can be reversed by diet and exercise .they don't tell you the truth .about many things such as arthritis one doctor told me there are things that work very well but I cant tell you what they are because they are not pharmacy drugs so I cant tell you what idiots never trust a doctor get several opinions 1 may be correct. that's where the term quacks came from
A more extensive explanation of my 'reaction' to Albutrix:
I got more and more ill as I took it, and had a constant sense of excess bile. I became weaker and weaker. Also, everything I ate made me feel very nauseated, and I felt like I was having a chemical reaction. My lungs started to hold fluid. I became extremely dizzy, and felt like I would maybe pass out. I had a sense of impending death. I had taken the full dose of Albutrix for 17 days.
I quit the Albutrix for several days, and improved immensely. Then I retried it again, but only took 2 tablets a day for 2 days, and was again very ill, feeling like I was going to die. I quit it completely, and after several days I was again feeling much better. I really feel I had a full systemic reaction to the Albutrix. I really feel that if I tried it again I would die.
I was diagnosed with a very low anion gap, though my albumin had only dropped from 4.5, to 4.2, so plainly whatever was happening had more to do than the slightly lowered albumin. I had taken the Albutrix for little over 17 days, then was off totally for one week when I got my labs. If I was ill solely due to the low anion gap then I should have still been very ill, but I recovered each time I had quit the Albutrix. So, I really feel I had a full systemic reaction to the Albutrix.
{I developed a significant chronic cough while taking Albutrix that will not go away due to the fluid build-up I developed while on Albutrix, and the effect this fluid has had on my heart, partially because I became too ill on the Albutrix to continue any physical activity. I firmly believe I had a serious allergic reaction to the Albutrix.}
My doctor would describe this as an Anaphylaxis reaction. Again, it is a shame that the manufacturer does not reveal at all what is in Albutrix, or how it is processed.
I know that medical doctors also sometimes are encouraging use of Keto Analogs, and there are a number of articles online, most specifically encouraging using Keto Analogs only in stages 4 & 5 due to their high costs. From my reading I realize that these things can and do help a lot of patients. I am just sad that I cannot use them, and have reacted so badly to Albutrix. It made me so ill that my heart is still not doing well in recovering from it. This is not a new thing to me. Any time I have reacted in an anaphalactic way to a medicine or food it has taken a long time for my heart to recover. But, there is getting to be so much damage to my heart that I really am concerned about a point of no longer recovering. My fingernails show extensive damage from my heart damage after this last bout. My heart has been feeling very weak and fluttery. It did not help that after my last nephrology appointment I became so depressed that I did no exercise for 11 days, but spent my time either in my recliner, or on the computer researching. I am now back exercising, and using exercise to try to strengthen my heart. -- On a side note: I have read that their are persons who are so allergic that they are even allergic to water. Yes, water. Their condition makes for a very short life.
The recommendation for protein supplements come from the NKF KDOQI nutritional update from 2020:
Guideline 3: Protein and Energy Intake
3.0 Statements on Protein Amount
Protein Restriction, CKD Patients Not on Dialysis and Without Diabetes
3.0.1 In adults with CKD 3-5 who are metabolically sta-
ble, we recommend, under close clinical supervi- sion, protein restriction with or without keto acid analogs, to reduce risk for end-stage kidney disease (ESKD)/death (1A) and improve quality of life (QoL) (2C):
a low-protein diet providing 0.55–0.60 g dietary protein/kg body weight/day, or
a very low-protein diet providing 0.28–0.43 g di- etary protein/kg body weight/day with additional keto acid/amino acid analogs to meet protein re- quirements (0.55–0.60 g /kg body weight/day)
Protein Restriction, CKD Patients Not on Dialysis and With Diabetes
3.0.2 In the adult with CKD 3-5 and who has diabetes, it is reasonable to prescribe, under close clinical su- pervision, a dietary protein intake of 0.6 - 0.8 g/kg body weight per day to maintain a stable nutritional status and optimize glycemic control (OPINION).
Dietary Protein Intake, MHD and PD Patients Without Diabetes 3.0.3 In adults with CKD 5D on MHD (1C) or PD (OPINION) who are metabolically stable, we recommend prescribing a dietary protein intake of 1.0-1.2 g/kg body weight per day to maintain a
stable nutritional status.
Dietary Protein Intake, Maintenance Hemodialysis and Peritoneal Dialysis Patients With Diabetes
3.0.4 In adults with CKD 5D and who have diabetes, it is reasonable to prescribe a dietary protein intake of 1.0-1.2 g/kg body weight per day to maintain a stable nutritional status. For patients at risk of hy- per- and/or hypoglycemia, higher levels of dietary protein intake may need to be considered to maintain glycemic control (OPINION).
Link:
Page S43
AND
4.1 Statement on Oral, Enteral, and Intradialytic Parenteral Nutrition Supplementation
Oral Protein-Energy Supplementation
4.1.1In adults with CKD 3-5D (2D) or post- transplantation (OPINION) at risk of or with protein- energy wasting, we suggest a minimum of a 3- month trial of oral nutritional supplements to improve nutritional status if dietary counseling alone does not achieve sufficient energy and protein intake to meet nutritional requirements.
Enteral Nutrition Supplementation
4.1.2 In adults with CKD 1-5D, with chronically inade- quate intake and whose protein and energy re- quirements cannot be attained by dietary counselling and oral nutritional supplements, it is reasonable to consider a trial of enteral tube feeding (OPINION).
Total Parenteral Nutrition (TPN) and Intradialytic Parenteral Nutrition (IDPN) Protein-Energy Supplementation
4.1.3 In adults with CKD with protein-energy wasting, we suggest a trial of TPN for CKD 1-5 patients (2C) and IDPN for CKD 5D on MHD patients (2C), to improve and maintain nutritional status if nutri- tional requirements cannot be met with existing oral and enteral intake.
Rationale/Background
PEW is common among patients with CKD, especially those undergoing maintenance dialysis therapy,218 and is associated with increased morbidity and mortality.219 The cause of PEW in patients with CKD is complex and multifactorial and includes reduced energy and protein intake resulting from anorexia and dietary restrictions, inflammation, hypercatabolism, protein losses during dialysis, metabolic acidosis, uremic toxicity, and the presence of comorbid conditions.218,219 As a result, pa- tients with CKD may develop an imbalance between di- etary intake and nutritional requirements. Many patients with CKD consume less protein and energy than their recommended intakes even when individualized dietary counseling is provided by a renal dietician.220
When dietary counseling alone proves insufficient to bridge the gap between protein-energy intake and target requirements in patients with CKD, provision of ONS is often the next appropriate step to prevent and treat PEW. Therefore, it is important to establish the effectiveness of ONS on nutritional status, clinical outcomes, and QoL in patients with CKD.
Although feeding through the gastrointestinal route should be the preferred choice of nutritional supplemen- tation, feeding through the parenteral route (ie, total parenteral nutrition [TPN]) may be a safe and convenient approach for patients who cannot tolerate oral or enteral administration of nutrients.218 In MHD patients, use of the HD access for TPN provides a significant advantage by eliminating the need for an additional permanent venous catheter placement. Because HD access is routinely used for the HD procedure, TPN can be conveniently administered during HD through the dialysis tubing. This type of TPN administration is called intradialytic parenteral nutrition (IDPN).
You seem to suggest that protein supplements are a “sham.” In the updated clinical guideline published in 2020 the NKF RECOMMENDS protein with the caveats above (in the actual guideline text) obviously.
I am not trying to correct you, I just wanted you to know that this is out there on the NKF site. As you well know misinformation or lack of the most current information, kills (sometimes literally) the credibility of threads, forum members who post, this forum, and worst of all patients of some ignorant, or uncaring (lazy) physicians. So I just wanted to point out the updated information since it is so recent and since you are referencing the same NKF site. Please don’t take offense or think me an ass!
Additionally, the question that must be raised is what someone is to do if they:
a) encounter this NKF advice (which, unfortunately doesn't recommend a specific keto analogue(s) to use - I've contacted the NKF raising this issue) and doctors who aren't willing to run with it
b) can't get a renal dietician / can't afford an online RD. Thus cannot get the close supervision recommended.
It is a problem they seem to gross over in the guidelines. Additionally, didn’t you say the analogues are limited in both manufacturer (a very limited number) and availability (not many choices on the market and not widely distributed)?
Recently, here in the US, Congress authorized the Centers for Medicare and Medicaid to pay for a limited number of visits and a limited number of months of visits to a renal dietitian. Maybe NKF thinks that solves the problem?? Of course, that is assuming there is a renal dietitian within 100 miles of you and that they are aware of the guidelines…lol but not really!
Paid for visits? Some is better than nuttin'. Better than a poke in the eye with a blunt stick .. as we say here.
Tbh, the sense I got was that the guidelines were just the base of a very tall mountain. There is much talk of implementation difficulties - the system simply isn't geared up for such a monumental guideline change.
Think: there a x number of renal dieticians in the system to service the pre dialysis / dialysis / transplant demand. The nature of the system is to be balanced (better said, understaffed) - there isn't a lorry load of excess renal dieticians sitting around doing nothing.
Then comes a guideline saying 'close supervision' (renal dietician led) of the entire CKD population from stage 3.
But this is a huge population in addition to those at end stage. It's almost and embarrassment: this monumental guideline running straight into a brick wall.
The RD's have to be created first. Which means they have to recruit school leavers to head in that training direction. Then train them. Then apply the guidelines.
Which is different how?? I mean, I had a nephrology nurse today tell me to take 600mg Ibuprofen 3 times a day to treat my gout outbreak. She recommended this when I asked for a 5 day oral steroid. She made the statement that the methylphenidate was 100 times more dangerous than 1800mg/day Ibuprofen for 5 days. It was her attempt to keep me from having her page the doc to call in the steroids. I just said “wow”. “Really?” “Wow, now page the doc to call me or I will report you to the VA, your boss, the hospital administrator and involve the media if you refuse…lol!” No I just said that is unacceptable and I desire to speak to the doctor and she pretty much has to page him.
My primary care is at the VA so they were close yesterday with no on-call. Plus today is Columbus Day, you know the guy who made it possible for us to kick your ass in 1776, or Indigenous Peoples Day or whatever is the politically correct term these days…what a crock of bull!
By the way, so no one get butthurt over my badmouthing Indigenous People’s Day BS and the destruction of our history, don’t bother.
My biological mother was a 17 year old high school dropout from the Cherokee Indian reservation in Cherokee, North Carolina and 100% full bloodied Cherokee. So that makes me 50% at least. Therefore, I can do what I want with this BS born out of the ANTIFA movement and perpetuated by progressive that have less “white guilt” than I do but talk about it as if it is the driving force of their political lives now. Ugh what RICH POLITICIANS will do to keep power, get richer, and control us peons!
Just back from a GP visit where I had to gently decline the recommendation for anti inflammation for a spot of tendinitis type thing. She's a nice GP and dead practical but like John the Baptist, on matters CKD she has to become less and I greater
Don't get me riled with that there snake oil political BS. What it there to mark about Indig people aside from your having butchered them and taken their land. Celebrate their customs and practices all of a sudden.
Still, nothing like a bit of indigenous to draw in the tourists
Isn’t it amazing, both of us mid 50s CKD advanced and trying our best to keep what we got and both have been offered NSAIDs by medical professionals, RN and A GP, recently. Telling about the state of education and training of clinicians in both countries. I am absolutely amazed…and it is troubling but not surprising…unfortunately.
We indigenous peoples want something since all your ancestors took everything…so why can’t we have a day? Lol!
To be fair, it's just another profession at trend o' day. Can you say that you've kept fully abreast of developments in your field. Or do you jist turn the handle sometimes?
...which is about how long I'd expect very low protein + keto acid analogues to become a standard path of consideration when walking into a nepbrologist at stage 3.
Here is the email I received from Lee Hull. I feel like it discounts my experience and reaction to Albutrix. There is NO product that can help anyone without there also being the possibility of causing harm. Some persons have allergic or systemic reactions to things few or nobody else has had reactions to. So, if I call I feel he has already taken his stance in this email, and anything I have experienced is moot. Does the promise of refund, even if the bottles are partially used (which mine was never opened as I had previously bought a bottle), only apply if HE agrees with you that you had said side effect?
His email:
I tried calling you today are regarding the issues you have reported.
To date, over 5,000 bottles of Albutrix has been used with no reported side effects.
Everything in Albutrix is FDA-approved and compliant.
I want to learn more about the issues you are reporting.
You're clearly going through a torrid time with your health. And an even more torrid time with the systems which are supposed to help you.
In this instance I'd take him on face value that he's interested in hearing what you have to say. This for a few reasons:
- he has developed a product for a huge, sleeping market sector in which demand will likely explode (due to new NKF guidelines). There is little competition: ketorena and albutrix are it. Others will pile in but getting a headstart in in market is priceless. His product, on face value is the better of the two being variously formulated for various stages of the disease and being calcium lite. If people can have reactions to it he'll want to know for sound business reasons.
- he's actually very interested that folk get best treatment. That he spotted a market opportunity is an addendum thing. In my view having read and spoken to him. He would be concerned for that reason too.
- he is not going to quibble about a refund unless he's a fool, which he clearly isn't. People search and little is hidden these days.
- I don't know the legals but can't imagine there is no potential impact from that front, no matter how rarely people have reactions such as yours. At the very least he would have to consider putting warning on site and label once knowing there can be issues.
I agree with most everything you say. I really do think he is a good guy supplying a necessary product. But, for him to start out his email to me the way he did, claiming "Nobody has had a reaction" is bull! And, he did not speak about the refund I requested until I sent him a confrontational email last evening, bringing up his claim of refunds even if the bottle is partially used. But, then he did a guilt trip and sympathy trip on me before finally coming through with the refund (after I put a stop to payment through my credit card). He says "we got off to a bad start". We did not need to IF he had simply acknowledged the reaction I had, instead of discounting it, and claiming nobody has ever had a reaction to it. Well then, I ask, WHY has he refunded other people their purchase price if nobody but me has ever had a problem with it? Blaming the customer, and refuting the customers reaction is NOT good business practice. He still wants to speak to me via phone call about my 'reaction'. It could be good to speak to him, or it could be bad for me to speak to him if he is just going to refute my experience and further stress out my heart that is still not in good shape after this last experience. A further rhetorical question: does he not realize that anybody can have an anaphalactic reaction to anything?
For help from the NKF sign up for their patient network kidney.org/nkfpatientnetwork
There is a whole section on nutrition and plant based diets. The site even gives you ideas for plant protein sources and the amount you should be daily in grams.
The warning may be in the NKF guidelines. It does stress both for reduced protein consumption and for supplementation that the patient be “metabolically stable.” With what she has described especially being highly alkaline, maybe that is NOT “metabolically stable.” Thoughts?
I have been on a high plant based diet along with animal protein because my albumin tanks when I am strictly vegetarian. My kidney function continues to decline, more rapidly now. I am leaking protein. I have not had the courage to look at my latest testing because I was so depressed after my nephrology visit when she told me what my GFR had dropped to.
Oh, the last prognosis from the nephrologist is that I (may) only live another year. But, they have been making dire prognosis for many years, and I am now 3 years beyond the previous one. So, who knows. Unless I get a serious bug I think I'll live longer than predicted.
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Managing Chronic Kidney Disease: the Acid/Base Balance Approach
I thought I'd post this in case I'm not the last person on planet Earth to find out
Diet & CKD
Hyperkalemia
Nearly Hit Stage 2
