A rant I suppose but any suggestions that might help...
I also have SIBO (Small Intestine Bacterial Overgrowth) where bacteria from large bowel get in to Small and expand on the food being digested (robing You of the nutrients) then creating painful, smelly gas. There are three forms, mine is hardest to treat 😒 as it's Hydrogen Sulfide and only fairly recently been discovered. The other two respond to certain antibiotics. Mine needs a very limited diet. Anyway, a small piece of salmon baked with lemon & herbs really set if off on sunday, lets just say my digestive system went into overdrive both ways, what a miserable night.
Basic fasting with clear celery juice and lemon in hot water has helped before, and it was a bit better in a couple of days so I could add plain chicken, fennel & carrot. This time oh no.
So yesterday, as I had been unable get our of bed for four days due to exhaustion, my husband begged surgery for face to face (I had phone consult with another GP 3 weeks ago due to exhaustion, she ordered Ferritin and Blood Count, and as were within range I was told was ok!)
Today I had to go in via wheelchair, I can't walk to loo at home without support & it's next to bedroom. GP is actually really nice, he happily prescribed my B12 jabs, so I know I'm lucky, he took lots of blood today, including Potassium & I had ECG which show arrhythmia and fast heart. He tried to give me PPIs 😯 (I think he has shares, tried before & my husband) and Buscopan but I said I take charcoal for the gas (it worked for my farty retired greyhound 🤢). So I asked him about the Potassium "Oh I don't think that's the problem" 😣.
He said he was working tomorrow so if results come in he'll call.
As we left I said I'd had a private Active B12 blood test, which came with Folate and Ferritin. I offered to let him know when results arrived, he said it wouldn't tell him anything 😮
I don't like hospitals because of many bad, dismissive experiences (rectal exam with no curtain and husband beside bed anyone 😔) But I feel so awful I feel he should have sent me for Potassium test and Then an intravenous infusion if needed. Perhaps GP fast-track to A&E has been removed? I certainly can't get there via car, to sit for hours in my state. 🥺
Sorry, rant over, thanks for the space and care from community xx
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TigerTea
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I get bouts of SIBO, and have a flare now, but hadn't heard of "a different sort" (thinks, 'oh goodness, please Nooo!").
How did you discover this to be the case?
What specifically causes this over normal SIBO?
Is it a particular bacterium, or type of bacteria, that proliferates?
What is the recommended cure?
Normally I have alternating doxycycline and metronidazole. I can't get hold of Rifaximin but know this is the gold standard.
Would this help your problem? Can you get it?
Do you have problems with candida or other yeast/fungi/microbial overgrowth?
Why do you get SIBO?
Sounds to me like you should have your pancreas checked if it hasn't been already - sounds like EPI could be one of your problems.
Why aren't you under a gastroenterology team? A question to ask the Dr, if you aren't! (I'm presuming you aren't because you don't say that you have called them).
To be fair, this is way beyond the remit of a GP.
Low potassium and magnesium will be a likely result of the problems you have had and can both cause you to feel fatigued and affect your muscles, and hence your heart rate and rhythm.
Are you just skin and bones? If not, will basic electrolytes (Dioralyte or sports energy drinks) help for a few days? They will boost your potassium levels gently and help keep you hydrated/get you rehydrated.
This isn't a long term solution as you need a wide range of vitamins and minerals, plus macro nutrients, and will experience other deficiency problems if you don't get them, but may help for a few days to get you back on track.
The advice for a pancreatic flare or Crohn's attack is usually 48 hours of clear fluids only, and is quite good for most digestive issues.
Sometimes I can get my SIBO to settle by drinking lots of no nutrient squash without eating, to limit the bacterial growth and literally flush it through. It's not nice but can be a means to an end.
What do you want to see done?
What do you think will help you?
As you seem to have a compassionate GP, if you have a clear strategy in mind they might be able to do the necessary referrals, tests, and treatment. Sometimes they just don't know where to start and are grateful for your ideas on a subject that you will have amassed more knowledge of because it is important to you.
Sorry for all the questions but I am quite intrigued.
You certainly have my sympathy and I wish you luck.
Thank you Denise, I might not answer everything in one go I'm exhausted, even breathing is tiring, one reason I think Potassium is a problem.
I am drinking celery juice, cold pressed at home, no bits, it's helped before & has various minerals etc in. I actually ordered some electrolyte powders yesterday so glad they have helped you. I was in uclh in 2016 due to huge weight loss, had tests done, including nuclear gruel where they imaged it moving for 2 hours, wich show stomach spasms and empties too quickly & gut moves too slowly. Also told I have low stomach acid. Result, no help given, sent home with tube into jejunum (which repeatedly kinked so replaced. Finally took it out as I'd gained a couple of kilos (from 42kg) and left me to work it out myself. This was a Neurogastroenterologist I was under! No wonder I developed SIBO eh?
I 'discovered' about 18 months ago when I had a private phone consultatio with gastro down south who'd helped me before. He actually mentioned potention B12 end receptor problems (before GP thought to test for B12).
He ordered Sibo breath test which came back negative, but Lab said they suspected Nitrogen Sulfide from results, the only tests for that were in US at time, I think they're now over here but we've spent thousands doing things nhs should do. And antibiotics don't work on the sulfide version, only specific diet (oh I love broccoli (huge sulfer producer 😥).
So, I think the big flare last week-end left me really de-hydrated and drained my essential stuff like magnesium and potassium. Why didn't the GP suggest electrolytes 😞. Im cross with him because he saw arrhythmia and fast heart rate but didn't send me to hospital. It's very frightening to feel your heart stop long enough for you to think 'oh god please start', and a medic brush all this aside. x
Where did you order private tests from? Not that you GP seems to be interested 🙄🙄 I am fed up at knowing our health system is reactive only to serious illness and not preventative.
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