Help wanted (Score so far related)

[IWMP]

Forgot to say this. Brain fog can come with the SIBO. I've seen it in research studies. Studies about gut/brain connection. I also think that because I can't hear out of one ear that that might be causing the feeling if dizziness. I won't know until I get that ear checked out. I have multiple appointments this month alone and I need to squeeze that in. There could be something going on in my sinuses that affects that one ear and therefore obstructs hearing and results in some dizziness. I've never felt like I would pass out and hit the floor. Just a momentary feeling of dizziness.

Sometimes I ask myself how in the heck did I get to this place? And how do you sort out this or another thing?

I'm not alarmed any more about any of this. I have had good days so I know I can have those again. Like today. I have it right now.

I figure that seeing to gut healing is priority. Everything else...especially weight gain depends on that one thing.

My only regret in this is that I didn't see a doctor earlier last year. We were hit with a storm, insurance claims, and work crews, and I just got lost in it all. I painted the kitchen during that time and took about a month or more to finish where normally it would have taken 2 days. I remember standing on kitchen counters feeling dizzy but I kept going thinking I would feel better soon--and that never happened. 6 attacks of afib and 4 trips to the ER. Then the holidays came and so on and so forth. It was like a blur. January of this year is when I had the scopes. A 5 month gap in getting actual treatment on account of that horrible PA who is no longer there now. No surprises there.

Hindsight is 20/20 but had I gone directly for care right then it probably would have been over and done with, much easier to beat, and just be a memory. But I didn't and this is where I'm at today.

I'm trying to do myself what I tell everyone to do. Be kind to yourself. Stop putting needless demands on yourself. Life isn't normal right now. Stop trying to live it normally.

Aww. Try not to beat yourself up. Hindsight is always so different.
I do see a lot coming out now about gut health being related to all sorts of conditions and apparently massively affects the immune system. I think it's interesting. It's another one of those magical mysteries about the body that feels divinely created. Although I suppose to people with expert knowledge it probably doesn't sound magical but to me it does. I find it interesting that we need bacteria to be healthy. We need nature to breathe. I think when you look at all of the connections that are involved just to live it's just crazy. Anyway... It's good that you aren't alarmed. I think anxiety makes everything soooo much worse. I used to go to the drs a lot because I had all these things going on and it was like why are so many different things going on chronically and I wondered if I was a hypochondriac it caused anxiety which made it worse. One day I discovered EDS and every single thing going on with me fit in that diagnosis. Asked the Dr and he asked the rheumatologist and she said she had thought it was that and diagnosed it. She didn't even need to see me again. So odd that she had already thought of a diagnosis but didn't diagnose it until she was asked directly. Anyway my point was, now that I have an answer that it all fits into, I don't panic because I know there is a reasonable explanation.

I'm sorry I made you feel the need to explain. I just got a fright about the type of symptoms you described but them being known side effects is a relief. Not nice but you know what it is.

[Jersey Girl]

Yes I've been having follow ups and communicating with the NP through her MA (medical assistant) who recently let me know that she's consulting with the Gastro doc himself. His main thing recently is probiotics. The symptoms I listed are all part of the package with the infection and it's treatment. I alreay knew that. This antibiotic I'm on is high potency if that makes sense...it's powerful and it kicks my butt some days. They use this because it goes right to the digestive tract and selectively targets bad bacteria. A common course of treatment is 28 days so that is what I am accomplishing right now since I think it's the exact right thing to do. I see the NP next week. Recall that first PA who did nothing but let me suffer another 5 months? The NP I have is right on it thank God. If you look at the medication it's being used off label to treat Sibo because of what I said above. Example: In order to get it approved the NP had to indicate that I have IBS with diarrhea--I have neither.

But Lord...today I feel NORMAL! Not normal energy but tummy wise...I feel NORMAL.

Here I pulled this off Mayo Clinic about Rifaximin. Bolding what side effects I have. Just going down the list there's a lot of repetition there.

AHH sorry. That is a lot of side effects. But it sounds like it is worth it if it works. It sounds like they are nuking your gut to fix it. How long do you have left?

Well nuking it is exactly my intention! I started on the med yesterday (2 day gap between courses this time) and it's for 14 days. So...28 days total and that's what I wanted. It's my best shot!

[IWMP]

AHH sorry. That is a lot of side effects. But it sounds like it is worth it if it works. It sounds like they are nuking your gut to fix it. How long do you have left?

Well nuking it is exactly my intention! I started on the med yesterday (2 day gap between courses this time) and it's for 14 days. So...28 days total and that's what I wanted. It's my best shot!

Fingers crossed. Praying it works out and for a positive future. Xx

[Jersey Girl]

Forgot to say this. Brain fog can come with the SIBO. I've seen it in research studies. Studies about gut/brain connection. I also think that because I can't hear out of one ear that that might be causing the feeling if dizziness. I won't know until I get that ear checked out. I have multiple appointments this month alone and I need to squeeze that in. There could be something going on in my sinuses that affects that one ear and therefore obstructs hearing and results in some dizziness. I've never felt like I would pass out and hit the floor. Just a momentary feeling of dizziness.

Sometimes I ask myself how in the heck did I get to this place? And how do you sort out this or another thing?

I'm not alarmed any more about any of this. I have had good days so I know I can have those again. Like today. I have it right now.

I figure that seeing to gut healing is priority. Everything else...especially weight gain depends on that one thing.

My only regret in this is that I didn't see a doctor earlier last year. We were hit with a storm, insurance claims, and work crews, and I just got lost in it all. I painted the kitchen during that time and took about a month or more to finish where normally it would have taken 2 days. I remember standing on kitchen counters feeling dizzy but I kept going thinking I would feel better soon--and that never happened. 6 attacks of afib and 4 trips to the ER. Then the holidays came and so on and so forth. It was like a blur. January of this year is when I had the scopes. A 5 month gap in getting actual treatment on account of that horrible PA who is no longer there now. No surprises there.

Hindsight is 20/20 but had I gone directly for care right then it probably would have been over and done with, much easier to beat, and just be a memory. But I didn't and this is where I'm at today.

I'm trying to do myself what I tell everyone to do. Be kind to yourself. Stop putting needless demands on yourself. Life isn't normal right now. Stop trying to live it normally.

Aww. Try not to beat yourself up. Hindsight is always so different.
I do see a lot coming out now about gut health being related to all sorts of conditions and apparently massively affects the immune system. I think it's interesting. It's another one of those magical mysteries about the body that feels divinely created. Although I suppose to people with expert knowledge it probably doesn't sound magical but to me it does. I find it interesting that we need bacteria to be healthy. We need nature to breathe. I think when you look at all of the connections that are involved just to live it's just crazy. Anyway... It's good that you aren't alarmed. I think anxiety makes everything soooo much worse. I used to go to the drs a lot because I had all these things going on and it was like why are so many different things going on chronically and I wondered if I was a hypochondriac it caused anxiety which made it worse. One day I discovered EDS and every single thing going on with me fit in that diagnosis. Asked the Dr and he asked the rheumatologist and she said she had thought it was that and diagnosed it. She didn't even need to see me again. So odd that she had already thought of a diagnosis but didn't diagnose it until she was asked directly. Anyway my point was, now that I have an answer that it all fits into, I don't panic because I know there is a reasonable explanation.

THAT'S exactly how things have been with me for the last 10 years. It's me who brought a condition to the doc's attention...not the other way around. Pretty amazing when you think that it's our own search for an answer that leads to a proper diagnosis. So like this...what came first the gastritis or SIBO? There's no solid answers that I can find except that it could be either way. Also...I still think Covid did this to me. I'll never stop thinking that. There's tons of research on all of these things like you said...immune system stuff...I often wonder if our docs even have time to keep on top of research?

I've had some high levels of anxiety with this but...who wouldn't? Right now I'm fine. Yesterday I was a mess but I was sleep deprived, too. Family member suggested anti anxiety meds. I don't want to put one more thing in my body right now.

I can see where you had all those symptoms and anyone would be anxious about it and wonder if they're losing their minds as well. It's like being shot at repeatedly and not knowing who or what is doing the shooting isn't it? You are NOT a hypochondriac and neither am I. We live in these bodies and we know when it's not right...even though it takes a long time to sort it out. You found out what was wrong with you. I think I have, too. Good thing we've been online for so long because we know how to use it to our advantage and for me at least, how to differentiate between legitimate and crackpot websites. That's a GOOD thing. All those old debates where I got hammered and had to learn to search for good sources and evidence? I was outclassed by several miles by people who were SO much smarter than me. But in the end, it taught me more than I ever expected to learn about doing my "homework" as I was scolded to do so many times! (No names, please! )

I'm sorry I made you feel the need to explain. I just got a fright about the type of symptoms you described but them being known side effects is a relief. Not nice but you know what it is.

No you didn't make me feel like I needed to explain. It gave me a chance to list all that stuff for my journaling here so I can use it to prepare for appointments. It's easy for me to forget something and looking at lists like that gives me a chance to review. Don't apologize for keeping me on my toes! Also maybe one day someone will read these things and it will lead them to a diagnosis of their own. The information you've put here yourself has the potential to do that as well so let's not forget the lurkers!

[Jersey Girl]

Well nuking it is exactly my intention! I started on the med yesterday (2 day gap between courses this time) and it's for 14 days. So...28 days total and that's what I wanted. It's my best shot!

Fingers crossed. Praying it works out and for a positive future. Xx

Thanks! And thank you for keeping up with me. I love you, Nicky! <3

[IWMP]

Aww. Try not to beat yourself up. Hindsight is always so different.
I do see a lot coming out now about gut health being related to all sorts of conditions and apparently massively affects the immune system. I think it's interesting. It's another one of those magical mysteries about the body that feels divinely created. Although I suppose to people with expert knowledge it probably doesn't sound magical but to me it does. I find it interesting that we need bacteria to be healthy. We need nature to breathe. I think when you look at all of the connections that are involved just to live it's just crazy. Anyway... It's good that you aren't alarmed. I think anxiety makes everything soooo much worse. I used to go to the drs a lot because I had all these things going on and it was like why are so many different things going on chronically and I wondered if I was a hypochondriac it caused anxiety which made it worse. One day I discovered EDS and every single thing going on with me fit in that diagnosis. Asked the Dr and he asked the rheumatologist and she said she had thought it was that and diagnosed it. She didn't even need to see me again. So odd that she had already thought of a diagnosis but didn't diagnose it until she was asked directly. Anyway my point was, now that I have an answer that it all fits into, I don't panic because I know there is a reasonable explanation.

THAT'S exactly how things have been with me for the last 10 years. It's me who brought a condition to the doc's attention...not the other way around. Pretty amazing when you think that it's our own search for an answer that leads to a proper diagnosis. So like this...what came first the gastritis or SIBO? There's no solid answers that I can find except that it could be either way. Also...I still think Covid did this to me. I'll never stop thinking that. There's tons of research on all of these things like you said...immune system stuff...I often wonder if our docs even have time to keep on top of research?

COVID has caused a lot of long term damage for a lot of people. I tend to hope that it is something that wears off eventually. I think more and more people self diagnose these days. It's scary when people say their Dr Googles things in front of them. Drs here just follow "nice guidelines" which is annoying.

I've had some high levels of anxiety with this but...who wouldn't? Right now I'm fine. Yesterday I was a mess but I was sleep deprived, too. Family member suggested anti anxiety meds. I don't want to put one more thing in my body right now.

This is an issue I have. I struggle to take medication. There are mindfulness videos on netflix. I'm sure you've probably heard it all before. My pain management appointments had been about breathing, rewiring my brain to desensitise and last session I set some goals which I haven't done lol. I need to over plan to do things like that but one of the things I'm trying to work on is to do mini tasks without extensive planning and diving in deep, trying to super plan every minute with checklists and things. I went on a tangent lol. I was talking about natural ways to reduce anxiety. Like meditation, sitting in your garden, listening to birds. I remember you liking audio books.

I can see where you had all those symptoms and anyone would be anxious about it and wonder if they're losing their minds as well. It's like being shot at repeatedly and not knowing who or what is doing the shooting isn't it? You are NOT a hypochondriac and neither am I. We live in these bodies and we know when it's not right...even though it takes a long time to sort it out. You found out what was wrong with you. I think I have, too. Good thing we've been online for so long because we know how to use it to our advantage and for me at least, how to differentiate between legitimate and crackpot websites. That's a GOOD thing. All those old debates where I got hammered and had to learn to search for good sources and evidence? I was outclassed by several miles by people who were SO much smarter than me. But in the end, it taught me more than I ever expected to learn about doing my "homework" as I was scolded to do so many times! (No names, please! )

I know what you mean, I think I had a similar experience, in a way I think it's good to be around people who are smarter when you are willing to do the work it makes you catch up, made me want to learn and improve, (still miles behind though haha). You've always seemed pretty smart to me though.

I'm sorry I made you feel the need to explain. I just got a fright about the type of symptoms you described but them being known side effects is a relief. Not nice but you know what it is.

No you didn't make me feel like I needed to explain. It gave me a chance to list all that stuff for my journaling here so I can use it to prepare for appointments. It's easy for me to forget something and looking at lists like that gives me a chance to review. Don't apologize for keeping me on my toes! Also maybe one day someone will read these things and it will lead them to a diagnosis of their own. The information you've put here yourself has the potential to do that as well so let's not forget the lurkers!

<3

[IWMP]

Fingers crossed. Praying it works out and for a positive future. Xx

Thanks! And thank you for keeping up with me. I love you, Nicky! <3

You are ace and I truly want you to recover and hope these antibiotics are still improving things. Have you managed to brave the probiotics. Did I mention they can be bought in tablet form? Not sure if I said that or just thought about saying it. I've taken the tablets before and it's as if you haven't eaten anything. But how you react will be different to my experience.

[msnobody]

How are you feeling, Jerz? Have you been able to reintroduce some foods safely back into your diet? I know you are crafting right now, so reply whenever you are free to do so.

Yes, I enjoyed the margherita pizza the other night. Too bad our fav pizza place (est. 1964) doesn’t have it on their menu.

[Marcus]

...THAT'S exactly how things have been with me for the last 10 years. It's me who brought a condition to the doc's attention...not the other way around...

I did the same with a situation completely unrelated to what you are talking about. I repeatedly presented significant research and finally coaxed my doctor into prescribing the appropriate drug. It was hugely successful for me. Ironically, some 5 years later, the medical community caught up and now, what I insisted he prescribe for me is standard fare.

[Jersey Girl]

Friends on the thread. I don't really feel like talking right now. It's been a difficult day for me. Couldn't keep all the balls in the air. Posting this here so I don't forget to print it out at the link to take to the gastro follow up on Thursday. If I sound "off" in this post it's because I feel "off".

Note: Had a cardio appointment on Monday. She said she's willing to pow wow with the gastro. My position was...fix the gastro issues and go from there. And LOOK at the information below that I bolded...says the exact same thing. Cardio agreed that was the underlying issue. She totally accepts the Roemheld Syndrome as does the gastro. She read to me the EP's clinical notes...he's got vagally mediated afib/rvr documented. All the cardiac testing I've had...shows my heart works fine as a functional pump. Vagally mediated means it's a nervous system issue...not electrical..sinus node misfiring dysfunction. The Vagus nerve is doing what it's supposed to do in this dynamic. I might need more gastro testing at this point. Possible motility issue...there's treatment for that.

What am I a freaking doctor? All these years and NOW they come up with gastrocardiac syndrome-->the Roemheld Syndrome I read about approx. 6 months into the afib journey when no one would listen to me about it ALWAYS happening after a meal. Not a doctor...just a concerned patient and pretty good detective I'd say.

A.I. Overview
Learn more
…
Roemheld syndrome, also known as gastrocardiac syndrome, is diagnosed by a combination of clinical history, physical exam, and tests that rule out other conditions:

Cardiac workup
A cardiologist may perform an EKG, Holter monitor, tilt table test, cardiac MRI, cardiac CT, heart catheterization, electrophysiology study, echocardiogram, and extensive blood work.

Gastrointestinal evaluation
A gastroenterologist may perform a colonoscopy, endoscopy, and abdominal ultrasound.

Symptoms
Roemheld syndrome is characterized by a temporal relationship between cardiac and gastrointestinal symptoms, where the gastrointestinal symptoms cause or worsen the cardiac symptoms. Relieving the gastrointestinal symptoms can also relieve the cardiac symptoms.

Psychiatric evaluation
A psychiatric evaluation may be performed if there are no heart abnormalities or structural heart abnormalities.

Roemheld syndrome is difficult to diagnose because the gastric symptoms can go unnoticed and the cardiac symptoms can be severe. The strongest confirmation of Roemheld syndrome is improvement of cardiac symptoms after treatment of the gastric conditions.

PRINT: Apparently came from here:

https://en.wikipedia.org/wiki/Roemheld_ ... 20subsided.