Getting rid of PPIs (acid blockers)

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Frunobulax
Posts: 161
Joined: Mon Jun 02, 2014 7:41 pm

Getting rid of PPIs (acid blockers)

Postby Frunobulax » Wed Jul 17, 2019 1:10 pm

If you take PPIs, you might get relief for your RLS by dropping them. I did it, it wasn't easy, and I'd like to share. Sorry if it's a long read.

I had my first RLS symptoms about 2 months after I started taking PPIs (Proton-Pump Inhibitors, stomach acid blockers), Omeprazole 20mg a day. I didn't realize that it was RLS of course, after all it took more than 2 years until I was diagnosed. What followed was a long story that I might share eventually, but let's just say that it was a rough ride for the last 10 years. Anyway, I always thought that there was a close connection between PPIs and RLS, as vitamin B12 was the single thing that really improved my condition, and vitamin B12 depletion is typical for people taking PPIs on a daily basis. But I always got some RLS relief whenever I took Betain HCL, a drug that raises stomach acid - which sounds like I'm nuts as I was taking PPIs to lower my stomach acid. (I could do this only for a few weeks until heartburn became too severe.) There is more evidence in my case, but let's not get into that here.

What I do want to share is how I got rid of PPIs, after 12 years. Why did I want to do this? 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 RLS.

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 leads to increased production of nitrogen monoxide in our body and therefore more ROS, reactive nitrogen species, some of which are toxic and permanently damage the mitochondrial DNA, with a worst case result of the crippling ME/CFS.)

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. (Google it. Some people think this is pseudoscience, but I think it is real and can cause severe autoimmune and neurological symptoms.) 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) - ho hope, I gave up after 6 weeks of constant heartburn.

But I managed to stop them eventually, and here is how. It took 6 months, after taking them for 12 years. As this is not a "who dunnit" novel, I'll give you the summary first: The key for me was to change my diet, and to do a leaky gut treatment before/when tapering the medication. (The butler is innocent for once.)

Of course I can't guarantee that it will work for you too. And I'm no doctor, so whatever you do, talk to your physicians before you change anything.

So here is how I did it.

1. I changed my diet to low carb/low glycemic index. (I think this is good for a variety of reasons, and posted something about this a few weeks ago.) This already led to reduced heartburn, which was my occasional companion despite taking PPIs. I threw in some specific vitamin supplements, as a mineral/vitamin profile showed some deficiencies, especially in magnesium and vitamin D3 - it was definately worth the money for the bloodwork which I had done in a specialized laboratory. (They were high doses, sometimes 100 times the recommended daily intake or more. But don't do this without consulting your doctors, and do it only for the vitamins/minerals where you have actual deficiencies. But hey, remember that PPIs reduce the uptake of vitamins and minerals? If you take PPIs then chances are that you have some deficiencies too, and you'll need large doses so that something gets through.)
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. After 2 months on the new diet I started tapering the PPIs. I was only at 20mg a day, so I went to 10mg for a month which went smoothly. I fought heartburn for a couple of weeks with antacids, but eventually it was OK. (If you are at a higher dose, you might want to taper in 10mg intervalls and continue tapering whenever you're free of heartburn for a week or so.) I could have reduced it further as there is a Nexium variant that can be administered in lower doses, but I didn't - instead I went to Ranitidine.

3. Then I switched to 2x150mg Ranitidine, which worked this time. 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. Again some heartburn for a few weeks, again antacids.

4. Then I got stuck. I could reduce the Ranitidine to 1x150mg a day due to intermittent fasting where I ate in an 8-hour span and took the Ranitidin when I had my first meal. But I couldn't get rid of the last dose, not for 2-3 months. 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, 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 (because it contains lectins or lectin-like ingredients: dairy products, nightshade vegetables, legumes) 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, and he has some compelling arguments for that.)
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, I'm avoiding some food completely and eat other stuff only in moderation, and I'm doing fine. I do get the occasional heartburn, but I'm fairly optimistic that this will resolve itself with time. There is no improvement with my RLS (yet), but let's wait and see - it takes time to regenerate the microbiom, and I can't expect miracles after 12 years of taking PPIs.


Alternative treatments
======================
There is a surgical procedure that may fix your heartburn and allow you to get off PPIs: The fundoplicatio. However, 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.

Since there is some evidence that low stomach acid may lead to leaky gut and heartburn as a consequence, it might actually be better to increase stomach acid for some of us instead of taking acid blockers. However, I tried this several times (Betaine HCL after meals), but the heartburn became quickly intolerable. Perhaps raising stomach acid works only if you are not on PPIs already.


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.

So yeah, 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/subject-information/diagnostics-information/zonulin-a-serum-marker-as-proof-of-leaky-gut.html).

I strongly recommend checking out the leaky gut theory. 10 years ago I would have dismissed it as nonsense, but due to my ME/CFS I had to dig deep into alternative medicine as there is no conventional treatment. Granted, there are many piles of sh** in alternative medicine. Possibly mostly piles of sh**. (Sorry, but that's the only way I can describe it. There is a massive industry behind esoteric theories about magnetism, energy waves/crystals, weird supplements and miracle cures, cheating people out of their money by selling horribly expensive placebos.) But there is also a minority that takes a scientific approach, and they can sometimes help us, patients that are given up by conventional medicine, by using vitamins, supplements and diets just as a conventional doctor uses drugs. If you believe in a differentiated approach to alternative medicine, reading about your microbiom/leaky gut is worth your time.

And since I started talking about alternative medicine and RLS anyway, one more thing and I'll shut up: Another RLS cause you might want to consider is mercury poisening. Our built-in detoxification system doesn't work equally well for everybody, and some of us have no problem with mercury while others (possibly with some specific genetic mutations) can have serious symptoms from small quantities. I personally know a few patients that were seriously ill but got better after mercury detoxing. Mercury does have the potential to "block" other minerals including iron, and it can do so even decades after the exposure.
If you have or had amalgam fillings, do google "Cutler protocol" for information on what you can do about it and how you can check if you have hidden mercury. But be aware, there are zealots out there blaming all modern diseases on mercury. I did the tests because I had amalgam fillings removed 10 years ago, but no indication of mercury here. But (in my opinion) testing for mercury is a good idea of you have any neurological symptoms.



I put this in prescription medications - I'm not sure if PPIs are considered a prescription drug in the US (most of them are here in Germany), but they are clearly "pharma". (Admins please move if not appropriate.)

stjohnh
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Re: Getting rid of PPIs (acid blockers)

Postby stjohnh » Wed Jul 17, 2019 2:22 pm

Interesting story and I'm glad you got off the PPIs. I did have mercury exposure in my teens, but have never had my level checked. I may ask my doctor to do so next visit.
Blessings,
Holland

Frunobulax
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Joined: Mon Jun 02, 2014 7:41 pm

Re: Getting rid of PPIs (acid blockers)

Postby Frunobulax » Wed Jul 17, 2019 4:26 pm

stjohnh wrote:Interesting story and I'm glad you got off the PPIs. I did have mercury exposure in my teens, but have never had my level checked. I may ask my doctor to do so next visit.


I'd suggest to google first. This is a very complex topic, as (a) testing for mercury is difficult and (b) chelating is even more difficult.

There are conflicting opinions. I think that Andrew Cutler got it right, who has written several books on this even though he was no medical doctor. But he explains a lot of symptoms that happen for people trying to chelate, and his method of chelating is probably the safest one. But again, best form your own opinion. (I have my CFS treated in a specialized clinic with a lot of patients who have mercury or heavy metal issues, so I learned quite a lot about that.)

Here is the summary what I have learned about the Cutler protocol. Mercury will show up in the blood only if there was a recent exposure. He claims that old mercury is stored in the brain and other body parts and won't show up in the blood.So basically the mercury is there and causes symptoms, but will show up in your blood or urine only if you use a mobilizing agent (chelator). But you can see characteristic changes in a mineral hair test, for example extremely low values of Lithium and other minerals - Cutler created a set of counting rules, and if they are satisfied then it is very likely that you have a mercury problem.

Basically there are two ways to test mercury:
(1) do the Cutler hair test and find someone who will check the results against Cutlers rules (there are several facebook groups dedicated to Cutler chelation, with people offering to check your hair tests if you post a picture), or buy Cutlers book to do it yourself. According to Cutler the hair test is the most reliable way to test.
(2) have an IV of a chelator (DMPS or DMSA) to mobilize the mercury and have your urine tested after chelation. This method is a bit risky because if you have mercury and the dose of the chelator is too high then it might mobilize the mercury and cause serious side effects. People have become very ill after chelating, which is a sign that (a) there are toxins in the body and (b) they were stored somewhere and are now again in the blood, reaching your brain and other organs where they weren't before. Also chelating might deplete your iron stores, which might increase RLS symptoms.

Therefore Cutler suggests the following: Instead of taking one large dose of chelating agent, do several rounds where you take the chelator every 3 or 4 hours for 72 hours (depending on the chelator), then make a break for 4 days or longer. Then do the next 72h round, possibly with a higher dose. That achieves 2 things:
1. Chelating starts with a very low dose, so hopefully there will be little or no side effects. The dose is increased in every round until there are side effects, then people will go back to the highest dose where they have no side effects.
2. As chelating happens for 72 consecutive hours where the dose of the chelator is fairly constant over time, any mercury that is mobilized will hopefully be picked up by the chelator and eventually being eliminated via urine.

The whole thing is more complex, as there are several choices of chelating agent and are selected depending on whether you have a fresh exposure or if you have lead too.

Having said all that: The Cutler protocol is mainly for people who have been subjected to high doses of mercury/heavy metals and serious health issues. Most people will be fine with traditional chelating as a test. But we're all here because we have health issues. And I can't think of any reason why using a single high-dose chelator IV (say 500mg DMSA) would be better than chelating with the same dose distributed over several rounds with a long timeframe (72h) - say 1mg per capsule for the first round, one capsule every 4 hours, so the first round has a total dose of 18mg, double the amount between rounds if you have no side effects, so the second round has 36mg, the third one 72mg and so on.

stjohnh
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Re: Getting rid of PPIs (acid blockers)

Postby stjohnh » Wed Jul 17, 2019 6:53 pm

Wow, I didn't realize mercury testing was so complicated.
Blessings,
Holland

Brynmr
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Re: Getting rid of PPIs (acid blockers)

Postby Brynmr » Fri Jul 26, 2019 4:52 pm

In 2002 I had been on Prilosec for a few years but gradually my heartburn got to the point that no amount of medication helped. The doctors had given up - seriously. A friend suggested I see this Chinese doctor who btw could speak very little English. So after a difficult visit (language barrier) he gave me some tea that looked like something dug out of the crawl space under your house and tasted like it and a handful of various colored tiny balls he called "pills" that I was to swallow periodically. The diet he suggested was vegetables and chicken and that awful tasting tea. My heartburn was gone in 24 hours. And when I say gone I mean really gone. I gradually reintroduced foods leaving sugar out and that was fine for about 5 years. Eventually my not so healthy diet reared it's ugly head and I was back on Prilosec which to date has been working. But yeah, I'd like to dump Prilosec.

Polar Bear
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Re: Getting rid of PPIs (acid blockers)

Postby Polar Bear » Fri Jul 26, 2019 7:45 pm

Brynmr - a great day that you saw your Chinese Doctor, what a fabulous result.

I'm assuming he is no longer available.
Betty
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Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Brynmr
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Joined: Sat Jul 21, 2018 3:15 pm

Re: Getting rid of PPIs (acid blockers)

Postby Brynmr » Fri Jul 26, 2019 8:06 pm

Polar Bear wrote:Brynmr - a great day that you saw your Chinese Doctor, what a fabulous result.

I'm assuming he is no longer available.


I saw him when I lived in Canada. I'm in South Carolina now so not doable. I could probably get pretty good results by going on that chicken and veggie diet for 2 weeks then avoid sugar and dairy. Of course that would mean giving up ice cream.

Polar Bear
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Re: Getting rid of PPIs (acid blockers)

Postby Polar Bear » Fri Jul 26, 2019 9:11 pm

Lol.... Dairy free ice cream.
Betty
http://www.willis-ekbom.org/about-rls-wed/publications
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation

Brynmr
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Joined: Sat Jul 21, 2018 3:15 pm

Re: Getting rid of PPIs (acid blockers)

Postby Brynmr » Fri Jul 26, 2019 10:37 pm

Dairy free and ice cream - mutually exclusive terms. ;)

ViewsAskew
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Re: Getting rid of PPIs (acid blockers)

Postby ViewsAskew » Fri Jul 26, 2019 10:41 pm

Polar Bear wrote:Lol.... Dairy free ice cream.


There is some awesome dairy free ice cream! Now, if only I could find dairy free cheese that I really liked. But, ice cream is easy for me.
Ann - Take what you need, leave the rest

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