Wondering if anyone else has experienced something similar and how treatment worked out.
After my autologous stem cell transplant, I experienced palpitations, chest pain, shortness of breath and bloating. My oncologist prescribed Prilosec (omeprazole) for the bloating, but relief was minimal.
It was serious enough to be admitted to to the hospital for testing and overnight observation. Some mornings I'd be short of breath before getting out of bed. Going up stairs was a struggle.
Every one of the many heart tests came back the same "your heart is in great shape". Low ferritin was diagnosed. Iron supplements helped some but ferritin remained low.
Fast forward four months and the condition improved but still limited my activities to slow walking. At six months feeling better, but still struggle.
Post colonoscopy, the GI doc asked questions about my health. I mentioned the chest pain, shortness of breath, and bloating. He said, Oh, we GI docs know all about that. And there is a medicine that can help. So he issued a referral. OK. I'm game.
GI follow up diagnosed "SIBO" - small intestine bacterial overgrowth - and prescribed the antibiotic rifaximin (three per day for fourteen days). This antibiotic is not absorbed into the blood stream, but works directly in the intestines. This is supposed to eliminate the bloating, and therefore pressure on the heart and lungs. It is supposed to also improve nutritional absorption, specifically iron and B12. By the way: the intestines NEED iron; the acid reducing medications in this case made the condition worse.
I'll be pretty happy if this all works out.
Has anyone had a similar experience?
How well did treatment work?
Did you have the same treatment or something else?
Did the condition return?
Any dietary changes important?
I'd greatly appreciate any guidance on what to realistically expect and suggestions on how what I can do to make it work better. Thanks!
Forums
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Chest pain, shortness of breath, bloating, SIBO
Just curious. Were you taking probiotics prior to all these symptoms?
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Janet1520
Re: Chest pain, shortness of breath, bloating, SIBO
I did have a limited amount of probiotics plus yogurt regularly.
Many foods that had never been a problem began contributing to bloating.
Does that suggest anything to you?
Many foods that had never been a problem began contributing to bloating.
Does that suggest anything to you?
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Chest pain, shortness of breath, bloating, SIBO
I had symptoms very similar to what you are experiencing. Along with the bloating, I eventually developed ankle swelling. My doc said my heart was fine. The bloating and ankle swelling got worse, along with shortness of breath. He ordered an angiogram and it showed no arterial plaque buildup. When I came in with a fever, my cardiologist diagnosed my problem as pericarditis, a thickening of the pericardum.
This was treated with a type of NSAID. The treatment seemed to help, but things soon got much worse, my feet swelled, I could see the artery on the right side of my neck beating, and I was diagnosed with ascites. To make a long story shorter, I had constrictive pericarditis. This takes a special type of echogram to see. My pericardium was thickened to the point that my heart couldn't do a full beat and fluids were building up in my abdomen. I had to have open heart surgery to remove the pericardium.
I hope this is not what you have, but it sounds like worth mentioning to your doc. This condition is so rare that it had a team of docs stumped until they did the special type of imaging.
This was treated with a type of NSAID. The treatment seemed to help, but things soon got much worse, my feet swelled, I could see the artery on the right side of my neck beating, and I was diagnosed with ascites. To make a long story shorter, I had constrictive pericarditis. This takes a special type of echogram to see. My pericardium was thickened to the point that my heart couldn't do a full beat and fluids were building up in my abdomen. I had to have open heart surgery to remove the pericardium.
I hope this is not what you have, but it sounds like worth mentioning to your doc. This condition is so rare that it had a team of docs stumped until they did the special type of imaging.
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Cliff44
Re: Chest pain, shortness of breath, bloating, SIBO
Cliff44,
Thanks for sharing your experience. The only thing worse than having a bad condition is having a bad condition and not knowing about it. I'd much rather know. Thanks again. Hope you're doing better. Did the surgery improve your situation?
I'd like to follow up a bit. Can you tell me more about the special test? I recently had a "nuclear echo" on a brand new machine. It involved a high resolution x-ray both with and without some kind of nuclear tracer, with exercise in between to infuse the tracer into every last nook and cranny. Does that sound familiar to you?
Was the fever somehow tied in to the pericarditis?
Peace brother.
Thanks for sharing your experience. The only thing worse than having a bad condition is having a bad condition and not knowing about it. I'd much rather know. Thanks again. Hope you're doing better. Did the surgery improve your situation?
I'd like to follow up a bit. Can you tell me more about the special test? I recently had a "nuclear echo" on a brand new machine. It involved a high resolution x-ray both with and without some kind of nuclear tracer, with exercise in between to infuse the tracer into every last nook and cranny. Does that sound familiar to you?
Was the fever somehow tied in to the pericarditis?
Peace brother.
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faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Chest pain, shortness of breath, bloating, SIBO
I was seriously starting to think no one else was experiencing what I was going through! For 6 months now I have been burping, bloated, dealing with chest pressure and shortness of breath. It gives me anxiety having the feeling of someone on my chest or squeezing my diaphragm. I even took myself to the ER to get a chest X-ray, EEG, and CT scan and everything was "normal". Even the vials and vials of blood they took:"normal".
I had an endoscopy of the upper GI tract and they took a biopsy and noticed swelling. About a month ago I was diagnosed with SIBO after doing the hydrogen breath test. I was highly positive, so did 28 days of the rifaximin 3x a day.
Well, it's been 5 days since I stopped taking it, and I am back to square one. I feel awful again. I was warned of the possibility it will come back right away, but I feel so defeated. They are saying anti-anxiety meds could help and they took me off dairy / lactose to keep me from getting gassy.
I had an endoscopy of the upper GI tract and they took a biopsy and noticed swelling. About a month ago I was diagnosed with SIBO after doing the hydrogen breath test. I was highly positive, so did 28 days of the rifaximin 3x a day.
Well, it's been 5 days since I stopped taking it, and I am back to square one. I feel awful again. I was warned of the possibility it will come back right away, but I feel so defeated. They are saying anti-anxiety meds could help and they took me off dairy / lactose to keep me from getting gassy.
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TKS
Re: Chest pain, shortness of breath, bloating, SIBO
I had these stomach and gut issues really before my diagnosis. After my treatment / transplant they were mild, with just some occasional bloating.
Now I have relapsed, and my M-spike is slowly rising. I am having all these gut issues again (bloating, constipation, heartburn pains etc). Gastroenterologist says "IBS," but I think it is from the protein imbalance or something related to my myeloma.
The gastroenterologist recommended a special over-the-counter probiotic called "Align". It is pricey (50 bucks for a month supply). You take one pill a day. I've been taking it for 2 months and I notice improvements. Not perfect, still have the bloat, but other areas are improved. This probiotic gives much higher doses than other probiotics you buy (and way higher then any yogurt or other natural foods).
Now I have relapsed, and my M-spike is slowly rising. I am having all these gut issues again (bloating, constipation, heartburn pains etc). Gastroenterologist says "IBS," but I think it is from the protein imbalance or something related to my myeloma.
The gastroenterologist recommended a special over-the-counter probiotic called "Align". It is pricey (50 bucks for a month supply). You take one pill a day. I've been taking it for 2 months and I notice improvements. Not perfect, still have the bloat, but other areas are improved. This probiotic gives much higher doses than other probiotics you buy (and way higher then any yogurt or other natural foods).
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lys2012 - Name: Alyssa
- When were you/they diagnosed?: 2010, Toronto, Canada
- Age at diagnosis: 32
Re: Chest pain, shortness of breath, bloating, SIBO
Hey TKS,
Glad you wrote. I was feeling alone with the SIBO problem.
There is hope. Like you, I had the rifaxamin ... and relapsed. Fortunately the GI guy sent me to a nutritionist. There is way too much to explain here, so here are some highlights :
First the bad news. Relapse from SIBO is the norm. Very few people fix it, and those who do spend years fighting it with a highly restrictive regime.
Now the good news. The symptoms can be virtually eliminated with changes to your diet. You can see significant improvement in as little as a week.
Even better news. These diet changes will improve your general health.
Where do you start ?
You're going to need a nutritionist that has experience, lots of experience, with SIBO. There are six nationally certified universities of natural medicine. I don't know who certified them. I go to one in Portland Oregon. There is another in Los Angeles (I believe).
What has helped me the most? Thanks for asking.
Beef bone broth - Homemade; some butcher shops carry it; I buy mine from an Asian market.
Fresh sauerkraut - Must be from the refrigerated section, or make your own.
More veggies, no dairy other than hard cheese, less carbs.
Tea that includes turmeric.
Oh, and bitters.
Hope this helps. Let me know how it goes. I'll help if I can.
Let yourself be happy. Your gut and your immune system will thank you.
Glad you wrote. I was feeling alone with the SIBO problem.
There is hope. Like you, I had the rifaxamin ... and relapsed. Fortunately the GI guy sent me to a nutritionist. There is way too much to explain here, so here are some highlights :
First the bad news. Relapse from SIBO is the norm. Very few people fix it, and those who do spend years fighting it with a highly restrictive regime.
Now the good news. The symptoms can be virtually eliminated with changes to your diet. You can see significant improvement in as little as a week.
Even better news. These diet changes will improve your general health.
Where do you start ?
You're going to need a nutritionist that has experience, lots of experience, with SIBO. There are six nationally certified universities of natural medicine. I don't know who certified them. I go to one in Portland Oregon. There is another in Los Angeles (I believe).
What has helped me the most? Thanks for asking.
Beef bone broth - Homemade; some butcher shops carry it; I buy mine from an Asian market.
Fresh sauerkraut - Must be from the refrigerated section, or make your own.
More veggies, no dairy other than hard cheese, less carbs.
Tea that includes turmeric.
Oh, and bitters.
Hope this helps. Let me know how it goes. I'll help if I can.
Let yourself be happy. Your gut and your immune system will thank you.
-
faithoverfear - Who do you know with myeloma?: me
- When were you/they diagnosed?: Sept 2014
- Age at diagnosis: 63
Re: Chest pain, shortness of breath, bloating, SIBO
Have had shortness of breath, usually when stomach is hurting, empty, and growling. It's like you held your breath, but didn't. It happens to me awake or asleep.
From what I read, this can be caused by methane and or hydrogen gases produced by SIBO . These gases go up the throat from the small intestine and spill into the lungs, shorting your oxygen supply. Scary stuff when it jars you awake when you first drift off to sleep.
Sibo in my opinion only exists if there is a mechanical problem with the small intestine, like scar tissue from any surgery near or in abdomen, blind loop, or obstruction. IBS is an effect not a cause. There is something they just don't care.
From what I read, this can be caused by methane and or hydrogen gases produced by SIBO . These gases go up the throat from the small intestine and spill into the lungs, shorting your oxygen supply. Scary stuff when it jars you awake when you first drift off to sleep.
Sibo in my opinion only exists if there is a mechanical problem with the small intestine, like scar tissue from any surgery near or in abdomen, blind loop, or obstruction. IBS is an effect not a cause. There is something they just don't care.
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Durrell2877
Re: Chest pain, shortness of breath, bloating, SIBO
TKS wrote:
Wow, same symptoms plus rib-cage pain. Came out twice positive for SIBO, same antibiotics did nothing for me just like you. Been on a strict diet, lost 60 pounds( now underweight) and nothing. Still have chest pain 24/7, chest pressure, rib-cage pain sometimes, and lack of air 24/7.
Yes, have some reflux/gastritis problems, which I did not have before, so it had to be the SIBO. Gastroenterologist said he does not believe is SIBO or reflux the reason for my pains. Yes, took anxiety medications for 2-3 years and stopped 4 months ago because they did not help with the issue.
For 6 months now I have been burping, bloated, dealing with chest pressure and shortness of breath. It gives me anxiety having the feeling of someone on my chest or squeezing my diaphragm. I even took myself to the ER to get a chest X-ray, EEG, and CT scan and everything was "normal". Even the vials and vials of blood they took:"normal".
I had an endoscopy of the upper GI tract and they took a biopsy and noticed swelling. About a month ago I was diagnosed with SIBO after doing the hydrogen breath test. I was highly positive, so did 28 days of the rifaximin 3x a day.
Well, it's been 5 days since I stopped taking it, and I am back to square one. I feel awful again. I was warned of the possibility it will come back right away, but I feel so defeated. They are saying anti-anxiety meds could help and they took me off dairy / lactose to keep me from getting gassy.
Wow, same symptoms plus rib-cage pain. Came out twice positive for SIBO, same antibiotics did nothing for me just like you. Been on a strict diet, lost 60 pounds( now underweight) and nothing. Still have chest pain 24/7, chest pressure, rib-cage pain sometimes, and lack of air 24/7.
Yes, have some reflux/gastritis problems, which I did not have before, so it had to be the SIBO. Gastroenterologist said he does not believe is SIBO or reflux the reason for my pains. Yes, took anxiety medications for 2-3 years and stopped 4 months ago because they did not help with the issue.
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papote57
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