sue1234 Posted August 20, 2010 Report Share Posted August 20, 2010 Okay. As bad as my POTS is, my stomach bloating has been taking center stage for the last 10 months! I am now on my third gi doctor to help get this sorted. And, so far, this is what I am finding:I have a 10 year history of bloating and bad digestion, and a 4 year history with POTS. I have had probably 4 upper scopes, and 3 out of the 4 showed gastritis, and 2 with ulcers. So far, the tests did NOT show h. pylori, BUT,:H. pylori is an anaerobic bacteria that invades the stomach in alot of people, but only gives symptoms to some. It causes gastritis and ulcers(me!!). This can cause bloating, pain/discomfort, etc.(me!!). I found out that h. pylori causes the release of a peptide called BRADYKININ: --on wikipedia, it says that it causes vasodilation through the release of nitric oxide(Rama, here it is). So, if we're exposed to this 24/7, then our bodies react the way we do when we stand--by overreacting to compensate. --causes increased vascular permeability, which could explain some of our odd swelling and blood "loss" --involved in pain --INTERESTING here, it causes natriuresis, which causes the body to lose sodium in the urine. This would cause low blood volume, as the osmotic force would kick in, so where sodium goes, so does fluid. I do pee alot!I read somewhere that when h. pylori is present, it causes all the inflammation and low-grade infection, which in turn makes the gi system release MAST CELLS(for all you MCADers).So, if that wasn't enough, I then found out that h. pylori can only live in an alkaline environment. To make this happen in the stomach, it releases urease which converts urea into two things: --ammonia, which binds with something else to form bicarbonate. This causes alkalinity in the stomach. According to an article I read(an will try to post in a next post), the pyloric valve between the stomach and the small intestine will not open if the stomach is alkaline! Does this sound familiar to all of us gastroparesis people? And we all know that food can not break down if it is not in an acid environment in the stomach. And with it not breaking down, it won't get absorbed in the small intestine, causes nutritional deficiencies. --CO2. It gets absorbed into the blood stream and eventually exhaled. Don't many of you show on tests a high CO2??So, have any of you actually been tested for h. pylori? I am in no way saying this is the absolute answer, but with my stomach problems, found ALL of this information OVERWHELMING in the fact that things kept pointing back to all the problems we have. I especially was interested in it causing low blood volume!Please read up for yourself and give me some feedback. I am going to demand to have the breath test for h. pylori. I suspect I've had it for the last 10 years and none of the few testing they've done has caught it. I can't imagine why else I would have constant gastritis and ulcers, as I don't drink or take pain relievers.Please, any thoughts would be appreciated!! Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 20, 2010 Author Report Share Posted August 20, 2010 Here's the article of acid vs. alkaline stomach:http://jpet.aspetjournals.org/content/38/1/85.abstract Quote Link to comment Share on other sites More sharing options...
Noreen Posted August 20, 2010 Report Share Posted August 20, 2010 For my last ulcer (over a decade now), my PCP put me on an antibiotic cocktail for H pylori without even testing for it. He consulted with a GI doc and, at that time at least, they said that H pylori is almost guaranteed to be present. Prior to this I would have an ulcer about every 3 or 4 years. As I said, after the cocktail, no ulcers - other stomach issues yes. Even with 6 years on steroids, I did not have an ulcer flare.This was prior to the availability of the breath test. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 I've been doing some search on this myself. Because I swear I look 7 months pregnant from swelling. I don't know if it's fluid or what. Don't have gas issues. Since I think I have the mast cell issues (just from reading and symptoms) I'm especially interested in whether or not to take the Tagament. Because it can decrease stomach acid and we do need the stomach acid to digest anything we put into our bodies. We will get malabsortption issues without the stomach acid and proper digestion. This could set us up for untold problems down the line. If I do a PH test I'm over akaline and all the research I've done on allergies, poor digestion, miagraines, vitiligo, hair loss, etc. can point to a lack of HCI and pepsin, enzymes that cause more acid in the stomach and are supposed to help relieve and "cure" all these issues. So, if you netralize the acid and aren't getting even the vitamins and minerals in your foods --- into your cells. You've got a whole lot of dysfunction going on. On the flip side if your ph is too akaline they say you'll never get cancer. But, you don't want to be real alkaline - just in the middle. Of course, this is a whole other issue from the acid in the stomach. (Got a little side tracked. Got so much in my brain to share.)Back to the h pylori -- pepto bismol will kill it. Bismol is what will kill it. Also, if you do quite a bit of olive leaf - a natural antibiotic, it may be real beneficial. It has helped people with lymes disease to get over it and cured mylaria when antibiotics didn't. Can't remember where I read that, in one of my health magazines.My husband has had real bad reflux and all the research I've read points to his need of more stomach acid - not less. Also read an article that suggested that it has something to do with the aldosterone. The need of more of it.I think that too much salt, unless you are sure that your adrenals or underproducing aldosterone -- may not be good for everyone. When I was doing alot of salt, I seemed alot worse. I've recently backed off and feel better. Still keeping my water content up and at times using electrolyte support. But not the massive salt on everything nor as many G2's. But, in so doing, I've noticed that I do seem more dehydrated. It's like the water doesn't get into the cells right, even though my whole body is swollen with too much fluid. Putting more fluid in when it's not going into the cells but into my feet, hands, legs and abdomen doesn't seem like the right thing to do. But, how do you get your cells to uptake the fluid not just go into your tissues?Any way, I think you're on to something and it will be wonderful if a dose of Pepto and an Olive Leaf is all we need to feel better. Keep up the good work in your searching. Quote Link to comment Share on other sites More sharing options...
ramakentesh Posted August 20, 2010 Report Share Posted August 20, 2010 Interesting theory. Be interesting to see what happened if you were treated for H.pylori. Sodium levels are generally reduced in POTS. Normal in low blood volume. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 I recently read that if we use a lot of salt, it decreases aldosterone. In fact, the article said that it would completely stop the production of it. I don't think that would be a good thing. So, it makes me wonder if all the salt is going to make us worse in the long run. But Florineff is given to increase salt retention when aldesterone is low. Salt, basically replaces the aldosterone ----?????? Am I understanding this correctly? Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 Interesting theory. Be interesting to see what happened if you were treated for H.pylori. Sodium levels are generally reduced in POTS. Normal in low blood volume.Question. I know I have low blood volume and severe pooling issues. Also, when a sodium check is done it is always too high. What could this be indicative of. I also have POTS, the hyper kind. My jump from lying to standing is always between 40 and 70 point pulse jump. Yet, I feel totally dehydrated all the time. It doesn't matter how much I drink. And, I'm not diabetic. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted August 20, 2010 Report Share Posted August 20, 2010 I recently read that if we use a lot of salt, it decreases aldosterone. In fact, the article said that it would completely stop the production of it. I don't think that would be a good thing. So, it makes me wonder if all the salt is going to make us worse in the long run. But Florineff is given to increase salt retention when aldesterone is low. Salt, basically replaces the aldosterone ----?????? Am I understanding this correctly?If a patient without POTS were to increase sodium consumption, then aldosterone production would decline to allow the excess salt to be excreted in the urine. In some POTS, patients are spilling sodium in their urine despite low renin and aldosterone levels to begin with. If aldosterone levels are low to begin with, the added sodium in diet is not going to have a clinically significant effect. Florinef replaces aldosterone, so this will obviously decrease aldosterone levels, but again if the levels are low to begin with than supplementation may be necessary. Ideally, a patient should not load up on sodium and be off medications that may alter aldosterone levels before a blood test for renin and aldosterone. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted August 20, 2010 Report Share Posted August 20, 2010 I meant to say that POTS patients are spilling sodium in their urine due to low renin and aldosterone. I can't figure out edit on these new boards Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 20, 2010 Author Report Share Posted August 20, 2010 Okay, so one person so far has a history of h. pylori. No one else?Anyone had gastritis on their endoscopy?When alot of you talk about your gastroparesis, did most of you have upper scopes? Just curious if your stomachs were normal looking or inflamed.Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 I meant to say that POTS patients are spilling sodium in their urine due to low renin and aldosterone. I can't figure out edit on these new boardsSo, you could spill sodium into your urine, even IF you hadn't upped your salt intake or been on Florineff if your renin and aldosterone were low? I wasn't doing the extra salt or meds when tested last.Thanks for explaining!! Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days.Yeah, I know -- that's why the other suggestion for the natural antibiotic --Olive Leaf. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted August 20, 2010 Report Share Posted August 20, 2010 I meant to say that POTS patients are spilling sodium in their urine due to low renin and aldosterone. I can't figure out edit on these new boardsSo, you could spill sodium into your urine, even IF you hadn't upped your salt intake or been on Florineff if your renin and aldosterone were low? I wasn't doing the extra salt or meds when tested last.Thanks for explaining!!Hi Issie,If you were upping sodium consumption (without taking Florinef) and had low renin and aldosterone, you would be spilling a considerable amount of sodium, but, hopefully the sodium would build in your system over time, despite excess spilling. With Florinef, your body will retain sodium, and the dose of sodium and Florinef would be "tweaked" to find a perfect balance between too much sodium retention leading to high blood pressure, swelling, and headaches or too little Florinef where one would still be spilling excess sodium. Your results should be accurate if you were not on meds and sodium when tested. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 hi Issie,If you were upping sodium consumption (without taking Florinef) and had low renin and aldosterone, you would be spilling a considerable amount of sodium, but, hopefully the sodium would build in your system over time, despite excess spilling. With Florinef, your body will retain sodium, and the dose of sodium and Florinef would be "tweaked" to find a perfect balance between too much sodium retention leading to high blood pressure, swelling, and headaches or too little Florinef where one would still be spilling excess sodium. Your results should be accurate if you were not on meds and sodium when tested. But what if you were spilling sodium and not using extra salt or on meds? Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 20, 2010 Author Report Share Posted August 20, 2010 Issie,If you have chronically low sodium, and not on any meds, I know that's how Addison's presents. I can't remember anybody's history, but have you had a stim. test to check for it? Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted August 20, 2010 Report Share Posted August 20, 2010 hi Issie,If you were upping sodium consumption (without taking Florinef) and had low renin and aldosterone, you would be spilling a considerable amount of sodium, but, hopefully the sodium would build in your system over time, despite excess spilling. With Florinef, your body will retain sodium, and the dose of sodium and Florinef would be "tweaked" to find a perfect balance between too much sodium retention leading to high blood pressure, swelling, and headaches or too little Florinef where one would still be spilling excess sodium. Your results should be accurate if you were not on meds and sodium when tested. But what if you were spilling sodium and not using extra salt or on meds?Then, water would follow sodium, and you may become hypovolemic. This, personally, happened to me. This could be why many patients will POTS have lower blood volume than control groups. Quote Link to comment Share on other sites More sharing options...
Noreen Posted August 20, 2010 Report Share Posted August 20, 2010 Issie, Pepto Bismol alone will not kill h. pylori. It needs an onslaught of double or triple antibiotics, along with Pepto. I've heard it is no fun to take! I also look very pregnant on bad bloating days.Yeah, I know -- that's why the other suggestion for the natural antibiotic --Olive Leaf.I tried it Issie. It didn't work. Only the mix of antibiotics finally worked. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 Issie,If you have chronically low sodium, and not on any meds, I know that's how Addison's presents. I can't remember anybody's history, but have you had a stim. test to check for it?Sodium levels are too high. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 Yeah, I know -- that's why the other suggestion for the natural antibiotic --Olive Leaf.I tried it Issie. It didn't work. Only the mix of antibiotics finally worked.But, did you take enough of it. It's like 4 caps 3 to 4 times a day. Sometimes, it takes longer with herbs and with a real BIG problem, it takes massive amounts. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 20, 2010 Author Report Share Posted August 20, 2010 Sorry, I misunderstood! Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 Then, water would follow sodium, and you may become hypovolemic. This, personally, happened to me. This could be why many patients will POTS have lower blood volume than control groups.Okay, so what do you do to retain the salt, get the water to go into the cells (so you're not a water ballon ready to burst) and feel and get hydrated when you feel dehydrated ALLL the time? Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 Sorry, I misunderstood!NO PROBLEMS -- I appreciate the input. Quote Link to comment Share on other sites More sharing options...
TXPOTS Posted August 20, 2010 Report Share Posted August 20, 2010 I have heard various sources recommend 4-10gm of sodium/ day, but I would definitely run this by a physician, because everyone is obviously different. I take Florinef, but I know other patients have tried licorice. Do you mean get the water to go in the vasculature and not other tissues? I had an infusion of normal saline and albumin that would accomplish this, so there may be infusion centers that offer this. Albumin keeps fluid in the vasculature, but it must be repeated for long term benefit and is expensive. I was a shriveled prune, not a water balloon, so we sound like we have different mechanisms at play. Quote Link to comment Share on other sites More sharing options...
issie Posted August 20, 2010 Report Share Posted August 20, 2010 I have heard various sources recommend 4-10gm of sodium/ day, but I would definitely run this by a physician, because everyone is obviously different. I take Florinef, but I know other patients have tried licorice. Do you mean get the water to go in the vasculature and not other tissues? I had an infusion of normal saline and albumin that would accomplish this, so there may be infusion centers that offer this. Albumin keeps fluid in the vasculature, but it must be repeated for long term benefit and is expensive. I was a shriveled prune, not a water balloon, so we sound like we have different mechanisms at play.Not really sure what I mean. My hands are dry and the skin on my hands will stand up, like dehydration. But my abdomen and feet and legs will be swollen with fluid -- I guess it's fluid. I can gain 10 lbs. in one day. To me, I feel dehydrated but at the same time drowning. If I drink a G2 I taste salt for nearly the whole day. Like my body is swimming in salt. My test, like I said, showed too high sodium --- even though at the time I wasn't using extra salt or Florineff. Not sure what the issues are. Trying to figure it out. Quote Link to comment Share on other sites More sharing options...
sue1234 Posted August 20, 2010 Author Report Share Posted August 20, 2010 I have the same issue, in a way. I have hands where the skin "tents" when pinched up, and the skin over my lower arms has many fine-lined grooves. And, any swelling I have is in my abdomen, and when hot, hands/feet. I always feel dehydrated, too, like I can't hold onto the water/fluids I drink. I have been having an issue with high potassium the last few labs I've had done. None of the doctors seem concerned, but when you feel like I do, I think anything abnormal on testing really needs to be looked at deeper. Quote Link to comment Share on other sites More sharing options...
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