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My son ( 28, ME / POTS) has been bedbound  for 1,5 year. The last few months he developed constant burping, until now no medication helped. He will soon start taking Nalcrom, prescribed  by his cardiologist.,suggesting it might have something to do with MCAS.

He cannot sit up for more than a few minutes, so he is eating mostly laying down.

Anyone having the same problem?

Erica. 

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Hi Erica,

Welcome, I'm sorry your son is having such a difficult time. He is lucky to have you caring about him. 

Whilst it is utterly miserable to live this, I would not expect the burping to have a sinister cause - it is very likely caused by his eating position. I am lucky that I can sit up to eat (although it makes me very lightheaded and I have come to really dislike eating since POTS), but when I was healthy & in hospital after having my daughter, I was very swollen down below, such that I couldn't sit up to eat, and can relate to swallowing a lot of air like that as it is such an unnatural position to eat in. 

Does he have any other symptoms of, or a diagnosis of MCAS, like rashes, itching, hives, wheezing, flushing etc? If he doesn't then I wouldn't think the burping alone (given he eats lying down) is suggestive of it. 

Are you able to tilt his bed at all so that he is angled slightly upwards? It may just help. It is certainly worth trying any medication offered though. Also what about smoothies/protein shakes - they are easier to manage and may be less of a problem re air swallowing as he can drink them through a straw or sports cup/bottle & no chewing. 

Best wishes,

B xxx

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I had problems with that and wonder how it figures in. This SShow started with GI issues last june and it was found through EGD that I had H Pylori and gastritis. I was belching a lot. I had a lapband too and they took it out. It helped a bit, but I still had and continue to have GI issues. I just had a colonoscopy and EGD yesterday. two polyps, a hemmorroid and I still have gastritis. The doc did biopsies and we'll see if H Pylori is still active, but I've tested negative with poop and breath tests. From what I have read, cronic H Pylori can cause autoimmune response that has neurological consequences. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4017036/

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If he hasn’t already, he should get a full gastric work up and get tested for food allergies and intolerances. Is he at least able to prop himself up in bed when he eats and stay up for a couple of hours after.

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On 5/5/2019 at 12:21 AM, JimL said:

That's a really fascinating article Jim. I have to be honest I've never really thought much of old H.Pylori given about 50% of us have it and its presence/eradication seem to correlate poorly with symptoms, but I've never actually been tested myself.

I've been on Omeprazole for about 20 years for reflux. I don't know how I'd be off it for the required 2 weeks for the test though! (Here it is done by stool sample in the community, we used to have a blood test for which they didn't need to stop PPI, but it is no longer available).

B xxx

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33 minutes ago, bombsh3ll said:

That's a really fascinating article Jim. I have to be honest I've never really thought much of old H.Pylori given about 50% of us have it and its presence/eradication seem to correlate poorly with symptoms, but I've never actually been tested myself.

I've been on Omeprazole for about 20 years for reflux. I don't know how I'd be off it for the required 2 weeks for the test though! (Here it is done by stool sample in the community, we used to have a blood test for which they didn't need to stop PPI, but it is no longer available).

B xxx

The only test that's truly conclusive is a biopsy through EGD. I just had one last week and we'll see if it's still active. I've been miserable for months. H Pylori has been known to cause autoimmune response. I have to wonder...PPI's long term are bad. Can cause B vitamin deficiencies and if I've read right, joint/hip problems. 

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38 minutes ago, JimL said:

The only test that's truly conclusive is a biopsy through EGD. I just had one last week and we'll see if it's still active.

I had one several years ago at POTS onset as I lost a lot of weight, but I don't think the H.Pylori test was done. Th best I have is the stool test if I could manage on just ranitidine and gaviscon for the two weeks prior. 

 

40 minutes ago, JimL said:

I have to wonder...PPI's long term are bad. Can cause B vitamin deficiencies and if I've read right, joint/hip problems. 

I've heard the bad press, but for me it isn't optional, I'm in severe pain if I forget just one. I do supplement B's, and thanks to POTS I don't get much use out of my hips anyway!

It's the lesser of two evils. Also untreated reflux can increase risk of oesophageal cancer over years and I've had it since childhood so there is an upside.

B xxx

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11 minutes ago, bombsh3ll said:

I had one several years ago at POTS onset as I lost a lot of weight, but I don't think the H.Pylori test was done. Th best I have is the stool test if I could manage on just ranitidine and gaviscon for the two weeks prior. 

 

I've heard the bad press, but for me it isn't optional, I'm in severe pain if I forget just one. I do supplement B's, and thanks to POTS I don't get much use out of my hips anyway!

It's the lesser of two evils. Also untreated reflux can increase risk of oesophageal cancer over years and I've had it since childhood so there is an upside.

B xxx

I've never had stomach issues before this. I am miserable though and it's worse off esomeprosole and sucralfate. I am finding I have to cut out certain foods now. I plead guilty. Nothing with tomatoes, nothing carbonated nor alcohol. With my last EGD, they said I had gastritis is two spots in the stomach and they took a biopsy. They did last July too. I just thought that was the normal thing to do. 

 

 

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3 hours ago, JimL said:

I've never had stomach issues before this.

Do you think it could be related to your lap band at all? Did it coincide with removal?

 

3 hours ago, JimL said:

I am finding I have to cut out certain foods now. I plead guilty. Nothing with tomatoes, nothing carbonated nor alcohol.

I always loved that omeprazole let me eat what I wanted, curry, onions, fruit juice etc. I never really drank much alcohol when I was healthy anyway, but with dysautonomia, even without stomach problems, it doesn't go well!

3 hours ago, JimL said:

I just thought that was the normal thing to do. 

Depends who is paying for it - NHS it is the bare minimum, looks normal, no cancer, no bleeding, no ulcer, done!

B xxx

 

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3 minutes ago, bombsh3ll said:

Do you think it could be related to your lap band at all? Did it coincide with removal?

 

I always loved that omeprazole let me eat what I wanted, curry, onions, fruit juice etc. I never really drank much alcohol when I was healthy anyway, but with dysautonomia, even without stomach problems, it doesn't go well!

Depends who is paying for it - NHS it is the bare minimum, looks normal, no cancer, no bleeding, no ulcer, done!

B xxx

 

The stomach problems came on last late may and over a couple days time. I went from feeling normal to stomach problems that have gotten worse. I went to doctor, had a CT scan, the only things that came back was a mild inguinal hernia, enlarged prostate and a nodule low in my left lung, probable granuloma. Went to my bariatric doc, did an EGD and found h pylori and gastritis. Did a round of antibiotics for 12 days and they symptoms returned later. Had an upper GI and found I had some mild dismobility. At this time I started to get patulous eustachian tube. bariatric doc said lets take the lapband out. Beginning of september, started getting tingling in my feet. Halfway through september started getting double vision. Lapband was removed Sept 22. After this I developed drop foot on my left foot. Went to a new PCP and he sent me for a MRI of lumbar spine. I also made an appointment for an ophthalmologist. MRI came back bad stenosis and disks in L2-S1, L4-5 is so bad that cord disappears on MRI. Got that fixed around Halloween. Went to ophthalmologist in november. Ordered a MRI of my brain. I also had a MRI of neck as I had issues related to that, had previous fusion in 2012. Brain scan came back ok. One test for MG, the ACH whatever it is came back negative. Sed rate and CRP were normal. I even paid for a ANA, which was normal. Eye doc sends me to a neuro eye doc at Mayo. What an ***. She was like, you have 4th cranial nerve palsy. Don't know why, but I'll send you back to your eye doc. No curiousity as to why. My eye doc basically tells me that when my diplopia stabilizes, come back to get prism glasses. I've never had eye problems in my life. Around christmas, I get palpitations and fast heart rate. Go to ER, no heart attack, sent home. 2 weeks later, same thing. I get referred to a cardio who does all the tests. Minimal plaque, no b vitamin deficiencies, but it seems I have OI and sends me for a TTT, which I fail. Sends me to an EP, who blows me off nicely as there's nothing he can do for me. During this time, my ortho says I need more cervical fusion. Get a second opinion, yup, C2-4 are back. Had that done March 27. Had my colonoscopy and EGD last friday. Neck doc said I couldn't be knocked out 30 days before or after surgery otherwise I would have had the GI stuff done sooner. During this time, my stomach issues remain and have gotten somewhat worse. The POTs stuff has improved a bit. I can function without having to leave work because I feel so bad. Still feel off, just not as bad and I push myself a little more. I made an appointment with a neurologist that specializes in POTS for may 21. I hope he's good and figures this stuff out. I got his name form this site, Todd Levine.  It's been almost a year of this SS and I am tired of it. I don't know how people do it for years before finding a treatment. My PCP thinks that it's all individual problems. I don't. I think I have something autoimmune/carcinoid/PNS or something that makes sense, but who knows. I also think that a lot of my docs think it's in my head. IF I find out what it is, I am tempted to get a lawyer and bend them over. This whole thing has left me not trusting doctors anymore. They're just mechanics for humans that have more education and charge more. Sorry to get long winded. I've just had it with intransigence, incompetence and indiffernce from the medical profession. 

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7 hours ago, bombsh3ll said:

Do you think it could be related to your lap band at all? Did it coincide with removal?

 

I always loved that omeprazole let me eat what I wanted, curry, onions, fruit juice etc. I never really drank much alcohol when I was healthy anyway, but with dysautonomia, even without stomach problems, it doesn't go well!

Depends who is paying for it - NHS it is the bare minimum, looks normal, no cancer, no bleeding, no ulcer, done!

B xxx

 

Went on the GI docs portal today and it said I have Chronic atrophic gastritis without bleeding. That doesn't sound good. 

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13 hours ago, JimL said:

Went on the GI docs portal today and it said I have Chronic atrophic gastritis without bleeding. That doesn't sound good. 

Hi, I would be inclined to suspect one main unifying underlying pathology behind all of these things, all occurring in a short space of time. Possibly autoimmune.

Hope you manage to get some answers. I am very interested to hear how you get on with Dr Levine. 

B xxx

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23 minutes ago, bombsh3ll said:

Hi, I would be inclined to suspect one main unifying underlying pathology behind all of these things, all occurring in a short space of time. Possibly autoimmune.

Hope you manage to get some answers. I am very interested to hear how you get on with Dr Levine. 

B xxx

I have been thinking the same, but I am the only one. The first PCP was like, you've lost weight and your panels come back fine, get over it and the second PCP is like, they're all unrelated. I don't think they are unrelated. I never have and I am the one that is looked at as nuts. 

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Hi Jim!

Have you heard of Dr Afrin? He described MCAS. In his book he talks about how he frequently sees patients develop MCAS after a gastric band surgery.

Have you read his book? If you haven’t, please do get it. “Never bet against Occam” THe title  means: Multiple dx are more likely caused by one cause than many.

Best wishes!

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2 hours ago, Caty said:

Hi Jim!

Have you heard of Dr Afrin? He described MCAS. In his book he talks about how he frequently sees patients develop MCAS after a gastric band surgery.

Have you read his book? If you haven’t, please do get it. “Never bet against Occam” THe title  means: Multiple dx are more likely caused by one cause than many.

Best wishes!

Right now I am seeing a neurologist that specializes in POTS and Dysautonomia. It's been slow. I had one visit to go over my stuff, one visit for skin biopsies and one scheduled for EMG. Based on the results, he'll order certain blood tests and other tests. I am hopeful that Dr Levine can figure this out. I don't know why this is happening, why i would get X, but a few possibilities come to mind, with diplopia being the lynchpin. PMR/GCA, Sjogrens and PNS/Carcinoid top the list. Of course MG could do it too from a PNS standpoint with a thymoma. I suppose MCAS could cause some of my symptoms, but I don't think all. I've have a lot os stiffnesss in my hands, wrists and shoulders. Thing is, I've have skin issues that my PCP said could be vasculitis, sent me to a vascular doc, who didn't find anything other than venous insufficiency due to previous DVTs. PMR/GCA is a form of vasculitis and the thing is, some things can go subclinical, meaning they don't show up on tests all the time. Only 50-70% of people test positive for the basic test for MG. My ophthalmologist only ordered the basic test, which came back normal and stopped there. There are four other tests. It's rare people with MG pass all four. I just don't get the complacency. I feel like crap most of the time, I see varying degrees of double vision and get pain in hands, wrists, shoulders and sometimes hips. Anyway, that's about it. 

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@JimL - regarding the vasculitis: my M-I-L has autoimmune issues ( Sjogrens ) and lymphoma and was just diagnosed with this form of vasculitis: 

https://en.wikipedia.org/wiki/Henoch–Schönlein_purpura

It is caused by autoimmune process. I thought maybe this could be of interest to you?

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3 hours ago, Pistol said:

@JimL - regarding the vasculitis: my M-I-L has autoimmune issues ( Sjogrens ) and lymphoma and was just diagnosed with this form of vasculitis: 

https://en.wikipedia.org/wiki/Henoch–Schönlein_purpura

It is caused by autoimmune process. I thought maybe this could be of interest to you?

The spots I have aren't that prolific. Some on the tops of my thighs and I set them on my right arm near the elbow. Funny thing about Sjogrens is that a coworker in my building has it. I have to wonder about the environment I work in. It's the school of life sciences at a university. It took her a while to figure it out, or a doctor. She went to Mayo eventually and they figured it out. She works half time now. Lymphoma would suck. That's scary. 

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