Bad breath and taste

[Lebrat]

Hi! I'm stage 4, GFR 20-24, BUN 34. About 2 weeks ago I started getting the ammonia breath I've heard about and my mouth always has a bad taste...almost rotten taste like garbage. My tongue even burns a bit. My dentist says my teeth are fine. My neph says I shouldn't have this until stage 5, but I have it and I'm so self conscious. I don't even want to get near my husband! Has anyone found a way to combat this? Or is this just life until dialysis or transplant? I'm literally crying every day. Thanks...

[verdogo]

I'm stage 4, gfr 18 and I've been dealing with the same issues. I think it started for me once my gfr had dropped to 23. I don't have an answer I just wanted to let you know your not alone on this

[Lebrat in reply to verdogo]

Thank you...most people just don't understand what we go through.

[Skeptix]

I don't know anything about the mechanism of ammonia breath - I'm not focusing on the stuff that doesn't impact me yet. But the word "ammonia" crops up in the discussion on diet.

Consumption of dietary protein leads to production of urea and ammonia. If your kidneys can't remove the urea and ammonia (and at eGFRs like yours and mine then they certainly cannot) then levels of these waste products will build up. Your urea (BUN in the US) is waay out of spec ( equating to 12.4, where the range is 2.5 -7.4 here in Europe). Presumably ammonia is out too.

IIRC correctly, the kidneys are also involved in ammonia production in trying to balance out an overly acidic diet. And that's not good work to set CKDed kidneys at.

Ammonia matters thus.

I'd guess that ammonia on your breadth is literally the overflow of ammonia out of your body which is chock full of it because your kidneys can't filter it. Like a bath overflowing.

I'm eGFR 29 and my urea is now well in spec (having been 13.5, a bit more than even you, prior to going on a low protein plant diet). I got urea in spec by reducing protein intake. Less protein in = less urea waste product = BUN goes goes down. And presumably ammonia with it

Are you on a low or very low protein plant* based diet. For if not, you won't be able to lower your urea (and presumably not your ammonia either).

* meat is highly acidic. As are the likes of dairy/cheese. By going plant, you eat an alkaline diet which is better for your kidneys and means your kidneys don't have to produce ammonia (which doesn't do your kidneys any good either)

[Lebrat in reply to Skeptix]

Thank you! Actually I don't eat red or milk products. I do have a boiled egg every other day and eat tofu, fruit and some fish. I don't eat enough green veggies....I admit that.

[Skeptix in reply to Lebrat]

There's two things going on here:

1. Quantity of protein:

That it be meat-sourced or plant-sourced isn't so much the issue. Quantity consumed is, in grammes.

Do you track quantity protein taken? Urea (BUN) indicates you're possibly consuming to much. Urea (and other toxins arising from protein metabolism but not measured directly) is toxic and progresses kidney disease.

It would be suggested, at your eGFR and urea level, that meat has to go altogether (and hi protein plant has to largely go). Your urea is the alarm bell here. There isn't a other way of getting it down.

2. PRAL (potential renal acid load).

Beef has the same PRAL number as tuna and chicken.. and egg, more or less. I have an egg maybe every week or two, along with a splash of milk in my morning coffee - and that's it for hi PRAL animal produce.

The old 'avoid red meat' advice doesn't impact on PRAL if the rest of your diet it heavily acidic. Good not to consume red meat. But nowhere near enough by way of dietary intervention

Again, measuring is knowing. If you set low proteib (a.k.a. low urea) target, log what you eat so as to guide you to target, you should hit target. And perhaps move yourself away from ammonia breath and the bigger issue looming: dialysis.

[Sammi_n_Munk in reply to Skeptix]

Hello Skeptix!! I want to thank you also, for these posts. I too have the ammonia breath and bad taste in my mouth always. I brush constantly and floss but it returns within minutes. I’m afraid to get close to people when I speak to them.

I do eat protein like chicken and eggs - a lot! But I need to include protein in my diet as I’m also diabetic. I tried a plant-based diet, consuming kidney beans, chick peas and nuts for protein, but found that my blood sugar levels began skyrocketing. Reading your post has helped me realize that I consume much too much protein within a week. I must try to cut way down on that. I usually just eat the egg whites, not the yolks. I only allow myself a yolk or two once in a long while.

I’m also stage four and also retaining fluid. This wasn’t the case last year. I admit, it has me worried. I exercise often (walking mainly), I never include sodium in my cooking, and I drink maybe one to one and a half litres of water per day.

Thank you again for your post. It has inspired me to make some changes. God bless. 😊👍🙏

[Skeptix in reply to Sammi_n_Munk]

Hi Sammi,

Glad I can be of assistance.

Afaik, the (Conservative, by nature) advice from the NKF is that low and very low supplemented diets are for people without anything going on in their lives. Diabetes is a complicating factor, I gather.

Which doesn't mean the basic advice can't be followed: find out what the optimal route is and start down it.

The narrow gate story in the gospels covers it: few are prepared to go through it, preferring to take the wider,ll easier road .. that leads to destruction

A low (or very low) protein plant diet is indicated for.many reasons. Does diabetes preclude that - or does it just complicate it. I can't see how chicken protein is required when plant will do. It may be you have to be choosey on the source. But seeing as you won't be having much protein, it can't skew your sugars that much!

Your taking some steps but might well be fiddling whilst Rome burns.

I'd recommend Lee Hull's Stopping Kidney Disease. Buy it and read it and then read it again (and after a while, again) It will set you on a war footing, whatever about the precise nature of the weapons you opt/need to employ in your own battle. Order it today .. there isn't a second to waste. Not at stage 4.

The Cronometer app is great for tracking. A cheap subscription gives you access to trends - which is vital for keeping tabs in you nutrient intake. It doesn't matter what you eat today. What matters is what you eat over periods of time.

Then get your doctor on board...

[RoxanneKidney in reply to Skeptix]

Dr. Will tell you okay if you are reluctant to not stop with the meat. But knowing the data one how plants can help slow progression, meat just don't taste as good as life. People just need to read and research.

[Skeptix in reply to RoxanneKidney]

Indeed. Knowledge is Power. That video you put up gave an insight into the hell that can be dialysis.

If people knew the reality, the chances of early death and the other downsides they might consider fighting toot and nail to avoid it.

[RoxanneKidney in reply to Sammi_n_Munk]

Ask your doctor about the SGLT 2 inhibitors. They are supposed to get rid of excess sugar and not be toxic on the kidneys. Plus they have a diuretic agent as well. Plus out pro-form placebos in slowing progression.

[Sammi_n_Munk in reply to RoxanneKidney]

Wow! Really?! I’ve never heard of SGLT 2 inhibitors! I must look that up. It sounds like something that could help me both with my sugars and as a diuretic. Thank you for sharing this RoxanneKidney!! 😊👍🙏

[RoxanneKidney in reply to Sammi_n_Munk]

You Tube has a lot of information on these drugs. Recently approved for CDK this spring.

[RoxanneKidney in reply to Skeptix]

I'm guilty if not tracking. A little always becomes a lot.

[Skeptix in reply to RoxanneKidney]

I don't do every day nor is there a need. Just do enough and the trends become clear. And .. analysis quickly let's you see which foods are blowing your budget. Few biscuits here, a small pot of soya yogurt there blows protein budget

[RoxanneKidney in reply to Lebrat]

Cut the fish and eggs. Meat is meat..red or white. The recommendation is to do plant based right up to GFR 5. Tofu is good but some is high in protein, so a little goes a long ways. Sugar and fats . ...not good either. Walking is a must.

[Bassetmommer NKF Ambassador]

Hi Lebrat, Change up what you are eating might help. If you body is building up urate and ammonia, it can be from eating too much animal protein. Start eating more veggies, less meat and see if that helps. See a dietician also to review your meals. There is hope with better diet that you might be able to stay away from dialysis longer.

[Lebrat in reply to Bassetmommer]

Thank you! I already eat fairly low protein. Haven't eaten red meat or milk for over 40 years! But I can definitely do better in the green veggie department.....

[orangecity41 NKF Ambassador]

I am at stage 3b and do have ammonia breath and dry mouth occasionally. I use dry mouth mouthwash and it helps. Best report to your Doctor and see if solution for you.

[Lebrat in reply to orangecity41]

Thanks! I've been trying Biotene.

[RhenDutchess123]

Add lemon slices to your water...Lemon helps neutralize the acidity in your body...sometimes I just take a bite of lemon...but if you do , be sure to rinse your mouth well as lemon can be hard on your teeths enamel...has always worked great for me

[Lebrat in reply to RhenDutchess123]

I just started doing that, thanks!

[Mich1949]

I'm stage 5, GFR 10, urea. 23.2 ; dry mouth, foul taste; my wife says I have ammonia breath off and on. The nephrologist told me a few weeks ago that symptoms would define when to start dialysis, rather than numbers . I have no energy whatsoever, no strength, want to sleep most of the time, getting rather desperate; just had a fistula created in my wrist (waiting for it to mature). So yes, I understand and sympathize....

[Skeptix in reply to Mich1949]

You're UK right? So that's a really high urea. You on low or very low protein diet? My reason for asking is that I suspect my next conversation with nephrologist is going to see them try to convince me to cease a very low protein diet. I was wondering what your nephrologist had you do on the way down the slippery urea slope.

[Mich1949 in reply to Skeptix]

I don't really get much help from the nephrologist; as far as he is concerned, I will be on dialysis - for some reason, here in the UK, dieting is not something they concentrate on. They advise keeping up the protein, as in chicken, fish and plant based - and that is something I try to do, as I seem to be rapidly losing muscle strength. I feel very much left to working out what is best for me, and I feel little equipped to do so!

[Skeptix in reply to Mich1949]

Well maybe read around here. You've a lot of people reporting on their progress as they get into the driving seat.

What's the specific cause of your muscle strength reduction? Could it be sheer tiredness of advancing CKD, say uremic toxins building up .. and nothing to do with requiring protein?

The amount.of protein required generally is fairly low (compared to what folk are used to eating). Since protein intake is directly related to urea production, it makes sense to consider reducing intake.

Has your nephrologist ever instructed a protein limited diet. Or cutting out meat altogether? Like, at any stage of your decline?

[Mich1949 in reply to Skeptix]

You're right, I was assuming the muscle weakness was lack of protein, I jumped to conclusions, as I often do when trying to tie in symptoms with causes. I am not very good at these things...I am now so tired (all the time) - I sleep very badly, and am very weak; I can barely manage a small flight of stairs at home. The slightest thing I do leaves me grasping for breath - and I don't know if that is kidney, anaemia or heart failure. I feel completely lost

[Skeptix in reply to Mich1949]

I'm really sorry - it's bad enough having kidneys to worry about (and I've some kidney capacity so ain't being hindered by CKD .. yet. But to have multiple issues only adds to the confusion

To feel lost is the worst. I don't feel it about CKD but have experienced it in my life. The pits

I don't know what to say other than that if it were me I'd give something an educated punt.

Two pretty indisputables:

1. Elevated urea comes from protein consumption. Its the waste product of protein metabolism. Eat less protein and urea will go down.

I was urea 13.5 ( ot as bad as you but with upper range 7.5 I was well out of range). Cut the protein down and 3 months later my urea is 6.4 and in range.

It's pretty simple. Less protein = less urea. That's worth underlining

2. Meat is murder. With you the victim. It simply isn't good for your kidneys

Those two things could be combined: vegetarian (with very limited dairy/egg) and watching protein intake of that vegetarian diet. You get out what you put in so if strict you could be pretty sure of a urea improvement at the very least. Sure, you'd drop a ball and slip here and there but if sticking with it .. we'll others here report the same thing. Improvement in the blood numbers

You'd have to track what you eat (there's an app for it which you can get for free) if you were techie enough to fill it in - it ain't that hard.

You'd need to get your doc on board - you've anemia to consider and some vitamins to add. But you could approach them on it.

Feel for you bud. Truly.

[Mich1949 in reply to Skeptix]

Thanks for the advice! I am seeing the cardiologist tomorrow; we'll see what he has to say, if he can help at all...

[Skeptix in reply to Mich1949]

Good luck with it. See if you can get comment from your neprologist or get a renal dietician to row in with an opinion. A phone call rather than having to drag yourself into their office.

[Mich1949 in reply to Skeptix]

Will do, many thanks...

[WYOAnne NKF Ambassador]

I started to get the ammonia breath before I was at Stage 5 also. I don't believe that there is an easy answer. The mouth rinses work, bur only for a short time. When I had a meeting or knew I was going to have a conversation with someone, I put an Altoid in my mouth. I sucked on them throughout the meeting. I knew that during that time my breath was AOK. Also stay well hydrated. When my BUN was high, showing I was dehydrated, my breath would be at its worst.Maybe your nephrologist has something better that works also.

[Mich1949 in reply to WYOAnne]

It makes sense that hydration would help; unfortunately, I also have heart failure, so am loath to drink too much...

[Sophiebun11]

Hi Lebrat, I'm sorry you're having to deal with that. I am getting that myself, and my kitty who is in early stage kidney disease has the foul breath too so it's something that happens to people and creatures alike with CKD.

I think we are all different and symptoms don't all hit us when they are mapped out per the CKD stages. I'm getting a lot of symptoms I shouldn't have yet like the itching, horrid muscle spasms where I'm jumping out of bed every 30 min. all night long and am exhausted in the morning.

I brush my teeth a lot, it helps me feel better for a bit.

Thank goodness for face masks during the pandemic . At least I don't have to worry about offending anyone in line at the store, etc. I live alone with my kitty and we both have bad CKD breath and put up with each other

It makes me sad to hear you are crying every day over this. You never know what among all we have wrong that will just set us off. It's usually not even the worst thing, but the small things that are hardest to deal with.

I hope you find a trick that helps. Please share it if you do. Best of luck.

🐇

[Skeptix in reply to Sophiebun11]

Not to be facetious but I don't suppose a low protein diet for your cat is unthinkable. Keto acid analogues to help that?

I've a beautiful black male (the female we got along with him adopted someone else and comes around the odd time when she's locked out). Cats are the bees knees.

[LuvSmallDogs in reply to Skeptix]

My little dog has a form of kidney disease, and he is on a low protein, highly alkaline diet for it. His alkalinity runs quite a bit out of normal range due to this, and if it gets bad enough then the alkalosis itself could kill him. So, working with the vets, we work on keeping him a tad bit into alkalosis, but keep it from getting too extreme, which would be deadly.

[Sophiebun11]

You're right in your thinking, they do make canned kitty food for CKD diets. It's lower in protein, also lower in phosphorous and comes by prescription only from a veterinarian. I think my kitty and I are more alike than most of my friends LOL

I love kitties and bunnies. My guy Henry is an orange tabby. He's a house cat. He'll be 17 in Jan. My last 3 kitties all lived to within a month or so of their 20 birthday. I'm hoping Henry lives into his 20s. I adopted him when he was 11 y/o. He'd been stuck at an animal rescue for 10 years; no one wanted him as he wasn't a snuggly kitten. He was a bit unsocialized. Now he is quite the cuddly boy. I can't imagine life without a kitty.

🐱

[Skeptix in reply to Sophiebun11]

As we know vlpd + keto appears better than lpd. KittyKetoAcid. Must mail Lee Hull on this potential goldmine!

I got converted to cats after growing up with dogs. Great animal: all the love and personality .. for a fraction of the hassle of a dog.

First cat was a feral who turned up in shed who I turned with 'conversion therapy'. Now I'd never consider a dog

[Sophiebun11 in reply to Skeptix]

My Henry was a feral the first year of his life. He lived on the street with his mom. When animal control caught them, they spayed the mom and let her go as she was too feral. A rescue took Henry thinking they could socialize and adopt him but he sat there 10 years without anyone willing to take on the task and bring him home. I'm so happy I found him after my last 20 y/o kitty died of cancer. Henry took a lot of "conversion therapy" as well!!!

I'm too lazy to have a dog. I don't like walking or getting up in the middle of the night if they needed to go out. Cats are pretty self sufficient.

I hope Lee Hull dedicates his "Stopping Cat and Dog Kidney Disease" to you for passing along the idea for the book. I'm sure with the help of a vet there could be recipes for making kidney friends diets for pets.

I just received Lee Hull's book yesterday. I'm looking forward to delving into it this afternoon after I finish my chores.

[Skeptix in reply to Sophiebun11]

Enjoy the read. Be interesting to hear what you make of him and his views.

See you in a couple of weeks!