Frunobulax
Senior Member
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(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).
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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