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Getting rid of PPIs (acid blockers)

Frunobulax

Senior Member
Messages
134
(This is something I posted in a different forum a while ago. It might be of interest here too.)

If you take PPIs, you might get relief by dropping them. I did it, it wasn't easy, and I'd like to share. Sorry if it's a long read. (Also note that things may be different for you of course.)

It appears that there are a lot of negative long-term effects from taking PPIs. They are among the most prescribed drugs in the industrialized countries as they were considered safe for a long time, but recently there have been studies linking PPIs to significantly higher chances of getting dementia, cardiovascular diseases, anemia, pneumonia, osteoporosis and more. Some of these claims have yet to be validated by larger studies, but I met several (medical) doctors who advised me to get off this stuff, urgently. Basically, there seem to be only minor short-term side effects (like nausea, headaches, insomnia) when starting the medication, but all hell breaks lose if you take them for decades.

Why are PPIs bad?
=================
There is a pretty solid connection between PPIs and ME/CFS.

1. There are many older studies noting PPIs lead to reduced uptake of vitamin B12 and iron. Hey, do I even have to go on? All right, just for you. (I admit that there are conflicting results and/or opinions. But most of the studies with conflicting results seem to consider only shorter timeframes, which is not sufficient to develop a B12 deficiency as our liver can store B12 supplies for up to 7 years, and the uptake does not go down all the way to zero.) But as mentioned above, there seems to be a wide range of chronic diseases associated with PPIs. The problem is that we need stomach acid to break down the nutritients in our gut - if we reduce the acid permanently, we get reduced uptake of a wide range of other vitamins and minerals.

2. There is some recent evidence that the proton-pump inhibitors inhibit not only the proton pumps responsible for stomach acid, but also in the mitochondria that are responsible for creating energy in your body, which may lead to long-term fatigue and other damage. (Blocking proton pumps in mitochondria may lead to increased ROS levels, reactive nitrogen species, some of which are toxic and permanently damage the mitochondrial DNA.)

3. Normal stomach acid is required to kill off "bad" bacteria, as your stomach is the first line of defense against them. Reduced stomach acid is associated with more unwanted bacteria in our gut (most famously helicobacter, but there are thousands of species at work here) - and in term reduced numbers of "good" bacteria, the ones breaking down the food, because bacteria compete for space in your gut. Throw in our modern-day diet containing a lot of wheat and corn products, alcohol, fertilizers, insecticides and antibiotics, we can damage our microbiom severely, which eventually leads to leaky gut. Leaky gut is associated with heartburn, and we have a vicious cycle: Reduce the acid even more due to the heartburn -> worsen the microbiom/leaky gut -> more heartburn.

4. PPIs are metabolized via the enzyme CYP3A4, and so are a lot of other drugs, including opioids and many antidepressants. So taking PPIs might impact how we metabolize other drugs, possibly leading to less efficiency for both the PPIs and the other drug(s).


How to get rid of PPIs?
=======================
Few doctors know how to do this. Getting off PPIs is very hard, as there is a severe rebound - once you stop them, the stomach will produce more acid for about a month, leading to severe heartburn. I tried to stop PPIs cold turkey several times, but always had to give up after at 48-72 hours, due to excruciating pain in my esophagus (which gets inflamed quickly from the constant acid exposure). It felt like someone is twisting a hot knife in my gut. The problem is that PPIs are among the strongest acid blockers - I also tried to switch PPIs for Ranitidine, an older acid blocker (also a prescription drug over here) - no hope, I gave up after 6 weeks of constant heartburn.

But I managed to stop them eventually, and here is how.


1. Go to a ketogenic diet, or at least low carb.
This is really the crucial part. Chances are that you won't get rid of PPIs and/or heartburn unless you reduce the carbs in your diet.
(https://link.springer.com/article/10.1007/s10620-005-9027-7, https://www.ncbi.nlm.nih.gov/pubmed/27582035). The theory behind it is that this will increase NO production, which in turn leads to less inflammation and improved stability of connective stability, in turn fortifying the separation between stomach and esophagus. This may or may not be the case, but some of those studies report a 100% success rate for treating heartburn, so the connection is there.

Additionally I took 1000 micrograms vitamin B12, some folic acid and biotin every day - there is a theory that so-called nitrosative stress (reactive nitrogen species, ROS) can cause muscle relaxation and therefore affect the efficiency of the valve between the gut and the esophagus, and vitamin B12 helps to reduce nitrosative stress. My nitrosative stress was clinically high above the norm, but did return to normal after about 5 months. I still take those vitamins daily.


2. Try to taper PPIs after a few weeks on the new diet. If you are at 40 try going to 20, if you're at 20 go for 10. The different PPIs are pretty much interchangable, so if your PPI is not available in a lower dose then another one may be. (I think Nexium is available as powder that can be dosed individually, so you could go down even further.)

You might experience some heartburn at first that you should fight with antacids. This should pass after a couple of weeks. Reduce the dosage further after you've been free of heartburn for at least 2 weeks.

3. Then I switched to 2x150mg Ranitidine. The good thing about Ranitidine is that it has no rebound, so if you can survive the 1-month PPI rebound with the help of Ranitidine, then you can hope to taper the Ranitidine afterwards. (But it is a lot weaker than PPIs.) Again some heartburn for a few weeks, again antacids. (I tried going to Ranitidine directly, but this didn't work.) See if you can go down to 150mg a day. See if you can drop it completely.

4. If you get stuck in the process (like me, it went smoothly to the Ranitidine but I couldn't drop that), check for leaky gut. Eventually I had my zonulin tested and got the diagnosis that I have leaky gut, so I started a full blown LG treatment - probiotics, prebiotics and the food that is supposed to repair the microbiom (glutamine/bone broth), but maybe more importantly avoiding certain food. And what do you know? About 2 weeks after starting this diet I was able to eliminate the Ranitidine and now I'm even taking some Betaine HCL to raise my stomach acid level.

5. I still had some heartburn, but after some time I noticed another pattern. I didn't get heartburn after every meal, and sometimes I didn't get any heartburn after consuming stuff among the usual suspects (sugar!). But after cutting the Ranitidine I got heartburn only after eating certain selected foods. As I just had read one of Steven Gundrys books, I realized that - indeed - most of the food that he advises to avoid does cause heartburn for me. For example, I can eat all the macadamias, walnuts or almonds I want, but peanuts or cashews will give me immediate heartburn even though the nutritional makeup is similar. (Peanuts are legumes, cashews are seeds, both are not nuts in a botanical sense and contain lectins.) So even though I disagree with Gundry on a number of subjects, I think he has a point that I should avoid lectins. He claims that everybody should avoid lectins, but I think that the dose makes the poison, and we have different tolerance levels to different food. So I believe this is highly individual. It doesn't hurt to avoid all lectins for a while just to see what it can do for you, though.
If you want to know more, Gundry explains lectins on his website (https://drgundry.com/lectin-guide) and has a downloadable "go/no-go" list for the diet he suggests. His most recent book "the longevity paradox" excels at explaining the theory and biochemical aspects behind the microbiom and leaky gut, citing a lot of scientific research. However, some of his conclusions and dietary suggestions are controversial, and his claim that he can cure almost every chronic disease with his diet is ridiculous. But I would still recommend his book, if you read it with a grain of salt.

As of today (more than half a year after taking my last dose of ranitidin), I'm avoiding some food completely and eat other stuff only in moderation, and I'm doing fine. I even take betain HCL to increase my stomach acid, as my stool test says that my acid is low. I still get the occasional heartburn, maybe once a week. I don't take any medication though, and I do take notes what I ate before I got heartburn. I'm certain that I'll eventually figure out a few more things that I need to avoid. I can eat some lectin containing veggies ( zucchini, cucumber), I have to cook others (tomatoes, legumes), and I have to avoid others completely (peppers).


Alternative treatments
======================
There is a surgical procedure that may fix your heartburn, but I can't really recommend it: The fundoplicatio. It's controversial as many internists contend that most patients will eventually return to taking PPIs in most cases, and there can be serious side effects including a permanent dysphagia. I had the surgery, but I was PPI free for only 4-6 months and then had to start them again. A lot of hassle for no gain.

I am sure that my heartburn and the inability to get off PPIs was 100% due to my diet, so it's no surprise that the fundoplicatio didn't help. After all I didn't change my diet afterwards.


Final words
===========
I never thought about leaky gut because I had none of the symptoms usually associated with it - all I had was some heartburn, and according to my doctors this came from a hiatus hernia and there was no other way to treat it except with PPIs, after the surgery option was exhausted. Turns out they were wrong. But LG as cause explains perfectly why the heartburn came back after surgery, after all the surgery didn't fix the real problem.

There is a blood test for leaky gut, it's called zonulin (you might want to look for a laboratory closer to your home than this one here, but it's where I went and has some excellent information on this: https://www.imd-berlin.de/en/subjec...lin-a-serum-marker-as-proof-of-leaky-gut.html).
 
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Hip

Senior Member
Messages
17,807
recently there have been studies linking PPIs tsignificantly higher chances of getting dementia, cardiovascular diseases, anemia, pneumonia, osteoporosis and more

Ironic if proton pump inhibitor (PPI) drugs turn out to increase the risk of cardiovascular diseases, as PPIs are prescribed for heart attack patients, to take alongside low-dose aspirin (PPIs help prevent aspirin from creating dangerous gut perforations).

An NHS document says this:
Long term use of PPIs has been linked tserious adverse effects such as:
  • Clostridium difficile infection
  • Increased risk of bone fractures
  • Increased mortality in older patients
  • Acute interstitial nephritis
  • Hypomagnesaemia
  • Vitamin B12 deficiency
  • Rebound acid hypersecretion syndrome Community acquired pneumonia
  • Hyponatraemia
PPIs should be initiated ONLY where clearly indicated and for the shortest duration that is appropriate, in order to minimise adverse effects. the risk of serious adverse effects will be reduced.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
Fruno,
Your timing is impeccable, thank you for posting.
I’ve been weighing options and trying to come up with strategies to get off these things.

I went on them about 4 years ago. Gastrologists had been trying to convince me for 20 years that they would
solve my problems, deep down I knew they wouldn’t. But at the time the reflux was so bad, I was in horrible pain and the ratidine and all my other tricks weren’t even touching it. Did ok for about 6 months, then a steady decline to today. I had/still have all the lovely ME/IBS symptoms regardless, but the ups/downs trac together.

Completely agree on the fundo surgery, my gastro said don’t do it.

He initially was some what convinced that antidepressants (mirtazapine) could fix the problem. Seemed to help at first, then pooped out. Interesting, you mention the enzyme CYP3A4, found this on PPI use, maybe kept it from working...

Concurrent use with inhibitors or inducers of the cytochrome (CYP) P450 isoenzymes CYP1A2, CYP2D6, and/or CYP3A4 can result in altered concentrations of mirtazapine, as these are the main enzymes responsible for its metabolism.

I’m currently trying to get something going with the enterovirus specialist Dr John Chia. Turns out my gastro
knows him. I can’t travel, so he’d have to work with us remote, which supposedly he does. Long story, but I was exposed to some bad bugs years ago when my ME began, 30 years ago. Not sure where that’s going to go, but if I could at least do the testing I’d know if there is a viral factor.

Regardless, the PPI’s have to go. Hope to put you suggestions to use...

Btw, did you ever use lactoferrin? I’m trying to take some, but it seems like it might be making things worse...
 
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starlily88

Senior Member
Messages
497
Location
Baltimore MD
I can eat all the macadamias, walnuts or almonds I want, but peanuts or cashews will give me immediate heartburn even though the nutritional makeup is similar. (Peanuts are legumes, cashews are seeds, both are not nuts in a botanical sense and contain lectins.) So even though I disagree with Gundry on a

Thanks for great info. I noticed my sister always eating almonds - tried them. So surprised that it did not hurt my stomach. Nor did walnuts. Did not know peanuts are legumes, they repeat on me. Yet I can have black beans with rice- don't get sick.
 

Frunobulax

Senior Member
Messages
134
Yet I can have black beans with rice- don't get sick.

The individual tolerance to lectins is very different. And there are dozens of different lectins out there. It's possible that you're fine with peanuts but get sick from tomatoes, while I get sick from peanuts and can eat tomatoes.

mirtazapine
I have my doubts about antidepressants in general. If you include some research that was never published and re-evaluate a few studies, there is little evidence that they work better than placebo. https://www.nejm.org/doi/full/10.1056/NEJMsa065779 So at the very least they don't work for all patients or even for most patients, though I suspect that they do help some patients. Also they influence the microbiome, which might cause long-term damage. I don't think it's a problem to take them for a few months, but I would absolutely recommend stopping them after half a year.

Btw, did you ever use lactoferrin? I’m trying to take some, but it seems like it might be making things worse...

Frankly, I'm not sure. I've been battling heartburn for more than 15 years (12 of them with PPIs) and have tried a lot of things. But none of them worked.

The low-carb diet was really the only thing that ever had a significant influence. Much later I did some research and found the studies I linked.
 
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Frunobulax

Senior Member
Messages
134
Ironic if proton pump inhibitor (PPI) drugs turn out to increase the risk of cardiovascular diseases, as PPIs are prescribed for heart attack patients, to take alongside low-dose aspirin (PPIs help prevent aspirin from creating dangerous gut perforations).

BTW, we already know that a daily aspirin does not decrease the risk of CVD in any way https://doi.org/10.1016/S0140-6736(18)31924-X. So all that remains here are the nasty side effects of PPIs...
 

Hip

Senior Member
Messages
17,807
BTW, we already know that a daily aspirin does not decrease the risk of CVD in any way https://doi.org/10.1016/S0140-6736(18)31924-X. So all that remains here are the nasty side effects of PPIs...

I believe low-dose aspirin is effective to help prevent further heart attacks in patients who have already had a heart attack. But as you say, it does not help prevent heart attack in people who have no heart disease.
 

Frunobulax

Senior Member
Messages
134
I believe low-dose aspirin is effective to help prevent further heart attacks in patients who have already had a heart attack. But as you say, it does not help prevent heart attack in people who have no heart disease.

I think it's a question of the time frame. As anti-coagulant it should protect because CAD is tied to coagulation. But CAD is also tied to inflammation, a long-term side effect of NSAIDs is that they damage the microbiome, which is conjectured to lead to leaky gut and thus to more inflammation in the long run. So there may be protection for a few months, but at some point the balance tips and the net effect is negative.

We may see the same effect in statins btw, with a different mechanism. Statins force calcification of unstable plaques, and unstable plaques are the ones that are dangerous. But in the long term it's not good if your heart becomes too calcified, so it's a major question mark whether statins give any long-term protection. All studies showing benefits (like Jupiter) were fairly short term.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
Frankly, I'm not sure. I've been battling heartburn for more than 15 years (12 of them with PPIs) and have tried a lot of things. But none of them worked.
Just wanted to ask, do you associate your reflux with fatigue?

It’s been quite a while for me, but when my energy level comes up, my reflux problems taper off. Not completely but much more tolerable. And when the fatigue hits, the reflux often comes with it. I’ve never had reflux without the fatigue. Heartburn/reflux alone shouldn’t cause crushing fatigue.

I also have a lot of viral symptoms. I’m beginning to look at if there is a connection between viral infection, reflux and fatigue. There is something called viral esophagitis.

My immunologist thinks there is a connection and had me try valcyclovir, but like most things, it burned my stomach and esophagus.

Have you ever considered this?
 

Frunobulax

Senior Member
Messages
134
Just wanted to ask, do you associate your reflux with fatigue?

Not really, no. But I took the wretched PPIs for a very long time.

I do remember however that I always felt better when I added Betain HCL for a few days. After a few days the reflux became intolerable though. So I am sure that low stomach acid exacarbated my fatigue.

If reflux is due to a weakening of the connective tissue (esophagogastric junction) as I believe, then it might be related to CCI/Ehlers Danlos Syndrome, which is also a weakening of connective tissue in a different place.
 
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EddieB

Senior Member
Messages
604
Location
Northern southern California
Chances are that you won't get rid of PPIs and/or heartburn unless you reduce the carbs in your diet.
I don’t expect you to have an answer but...
I’ve tried this before, trying it now, but eating more proteins seems to bring more acid. Vegetables don’t have enough calories and I start dropping weight. And they cause me a lot of gas. Is reducing carbs enough or is elimination necessary? Your points are valid, but I can’t figure how do this.
 

starlily88

Senior Member
Messages
497
Location
Baltimore MD
I don’t expect you to have an answer but...
I’ve tried this before, trying it now, but eating more proteins seems to bring more acid. Vegetables don’t have enough calories and I start dropping weight. And they cause me a lot of gas. Is reducing carbs enough or is elimination necessary? Your points are valid, but I can’t figure how do this.

I feel for you. Perhaps Eddie is correct about proteins, veggies. I got rid of my use of PPI's (Nexiuum) - but it did come on fully due to thyroid disease. It took me awhile to dose down. I can't eat protein or veggies due to disease I have - but don't have to use PPI's. Sometimes I tried doing a TBSP of Apple Cider Vinegar, the Mother's kind - with Unsulphured Molasses to increase my acid - sounds weird but after long use of PPI - I had so little acid being produced. Everyone is different - I found no help with Drs, but hopefully you can find a good GI to help you. Praying that you get better Starlily88
 

Frunobulax

Senior Member
Messages
134
I don’t expect you to have an answer but...
I’ve tried this before, trying it now, but eating more proteins seems to bring more acid. Vegetables don’t have enough calories and I start dropping weight. And they cause me a lot of gas. Is reducing carbs enough or is elimination necessary? Your points are valid, but I can’t figure how do this.

OK, disclaimer first. There is no consensus in nutritional science, so what I write is my opinion. But I have studied biochemistry and nutrition intensively during the last 2 years, and I believe that my opinions are backed by rock solid science. And changing my diet has done wonders for me, I'm back to working (part time) after being almost bedridden for a year. But you will find different opinions on this from nutritional scientists.

You need acid to break down protein, therefore you will produce more acid when eating protein. But if you cut protein, you'll run into deficiencies. But "cutting carbs" does by no means include "up protein". You need to get your calories from fat and not from protein if you cut carbs. Some people do well on high protein, but many don't, for different reasons. I try to stick to about 70% of calories from fat, 25% from protein, 5% carbs (without counting macros though).

Reducing carbs may or may not be enough, depending on your metabolic health. 90% of adults have signs of severe metabolic issues (abnormal Kraft tests that measure insulin and glucose in a glucose tolerance test). You can try to eliminate all processed carbs (flour products, especially wheat since gluten has it's own problems), and consume up to 100g carbs a day from unprocessed sources (rice, potatos, legumes). A decent although somewhat inaccurate indicator for metabolic health is HOMA-IR (homeostatic insulin resistance), calculated from fasting insulin and fasting glucose. If your HOMA-IR is below 1, you're doing fine and can eat some carbs. If it's 2 or higher, you are prediabetic and should go keto because your insulin levels after a meal probably are through the roof. Between 1 and 2 is a grey zone, you may be on your way to diabetes.

Final note, because you mentioned calories: Forget calories. Really. The "calories in = calories out" model of obesity is one of the worst mistakes in the history of mankind, IMO. It has led to a generation of overweight people, especially in the US. Cutting calories will set the body into a "conservation" mode where it stops using the calories. After a few months the body overcompensates and gains weight. All the studies have the same result: After a few month there is a rebound and people start gaining weight, even with the reduced calories. The problem is that this is unexpected and counter-intuitive, so the results of these studies have largely been ignored in the nutrition community (except for the low carb people, who know about it). Many good talks on this, you can look for Gary Taubes on youtube (who is a journalist and therefore does really good talks, easy to understand, but his science is rock solid). But the result is clear: Diets that cut calories make us even fatter in the long run, because this "conservation mode" lasts many years. (There is a very good study on this from the "the biggest loser" tv show. Candidates were checked 5 years after the show, almost all had gained back their weight and their base metabolic rate was down, significantly.)
What we should take away from this: Never worry about calories, always eat when hungry and until satiety, but no more and no less :)

I feel for you. Perhaps Eddie is correct about proteins, veggies. I got rid of my use of PPI's (Nexiuum) - but it did come on fully due to thyroid disease. It took me awhile to dose down. I can't eat protein or veggies due to disease I have - but don't have to use PPI's. Sometimes I tried doing a TBSP of Apple Cider Vinegar, the Mother's kind - with Unsulphured Molasses to increase my acid - sounds weird but after long use of PPI - I had so little acid being produced. Everyone is different

Yes, everyone is different. That's the most important thing, and we're always juggling probabilities here.

Still, heartburn has some really solid evidence that low carb will eliminate it. There was a study with 100+ women with heartburn/reflux, and after 10 weeks of keto all of them had no more reflux while eliminating their drugs. A 100% success rate in such studies is almost unheard of, but there we had it.

If you can't eat keto due to food sensitivities or metabolic abnormalities, that's a different story of course.

Thyroid is something that everybody with chronic diseases needs to check. It's overlooked way too often.
 
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EddieB

Senior Member
Messages
604
Location
Northern southern California
Praying that you get better Starlily88
Thank you!
Still, heartburn has some really solid evidence that low carb will eliminate it.
I agree. I’ve read those studies too, but not everyone can handle the high fats. One of my staple fats was sardines, but had to stop because of severe gas.

In my case anyway, I also believe there is a viral component involved as well, since I have symptoms and severe cfs.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
Thought I would update here,
Things got really bad a few months ago. In desperation, called the gastrologist to make an appointment. His staff calls back, and says he doesn’t want to see me anymore because my illness is behavioral and he can’t help me. Really?
So my wife had found another gastro, and after several weeks was able to be seen. He wanted to do an endoscopy right away, which was done last week. And I was able to get him to do biopsy for Dr Chia.
He said I have gastritis, but didn’t see anything horrible, and the biopsy he did were, of course, normal. So for now, waiting to see what comes back from Dr Chia.
And there are some blood tests the gastro wants me to do, but a have to stop the PPI for at least 2 weeks prior. Oh that isn’t going to be easy.
 

pogoman

Senior Member
Messages
292
I see this is an older thread but I had the same experience of wanting to stop PPI's after a decade or more of being on them.
Has anyone tried Gaviscon?
It acts as a barrier against reflux but tastes like crap so I only use it for the really bad reflux.
I used it and Tums to soften the reflux rebound after stopping Nexium.
Without them I would get the burning esophagus pain almost like a heart attack.
Long term I had to change my sleep habits due to night time reflux still happening.
I started sleeping on my left side, that way the top of the stomach is angled differently which reduces reflux.
The last thing I did was raise the head of my bed about 4 or 5 inches, its been a few years now and any occasional reflux is handled by Tums.
 

Frunobulax

Senior Member
Messages
134
I see this is an older thread but I had the same experience of wanting to stop PPI's after a decade or more of being on them.
Has anyone tried Gaviscon?
It acts as a barrier against reflux but tastes like crap so I only use it for the really bad reflux.

The key is really carb restriction. If I eat carbs for 2-3 days, the reflux returns immediately.

On a functional level, high insulin (as a consequence of carb intake) will interfere with the functionality of connective tissue, damaging the barrier between stomach and esophagus. Not every single meal, but high insulin for a few days is enough for me to be harmful.
 

EddieB

Senior Member
Messages
604
Location
Northern southern California
The key is really carb restriction. If I eat carbs for 2-3 days, the reflux returns immediately.
I took this to task a few months ago, after reading about it in several places. Eliminated all starches and grains, sugars (which I don’t eat anyway), etc. But I couldn’t add in enough of the fats and calories to replace, and my weight dropped. Almost 10 lbs in 4 months. I felt horrible and no improvement in the esophageal pain. So I recently went back to eating everything, gained a few pounds and feel slightly better. I have done some hard-core elimination diets in the past with similar results. I’m glad you’ve found results, but it’s not for me.