Metronidazole ‘just in case’ . . .

[GtrGrl]

I’ve been in hospital for three weeks now, having become progressively more unwell since last summer. I’m
now having functional seizures on top of terrible abdominal and pelvic pain, stools all over the place, itching, nausea, muscle pain, fatigue, brain feels like a can of fizzy pop that’s been shaken up, stabbing pains in my legs, swollen painful joints, painful kidneys, heart racing at 130bpm - the whole shebang. Today they wanted to put me on metronidazole as a precaution ‘in case’ I have Pelvic Inflammatory Disease. I refused, having sworn I would never ever touch it again.

My blood markers are not raised but then again, they weren’t even when I had a full blown C Diff infection with colitis. There is something wrong with me for sure, it all started with an unidentified gynaecological infection which I think has spread. If I don’t take it I may never get rid of whatever is making me so ill. I can’t go on like this, I’ve already had to give up work and my house and move back home. But it might not be bacterial in origin, and if I get C Diff AGAIN I might not get another FMT.

Any thoughts, please?

[beth22]

Do you have an infectious disease doctor? If not, I would ask for one to see you. Your team of doctors can call one in. All your symptoms do sound pretty scary, but I would want to know for sure if it is was an infection and what antibiotic might help with it. Metronidazole is not an antibiotic that is very broad spectrum. If I had to take antibiotics, I would want one that would work on whatever strain of bacteria I had. My fear is always that they would give me one antibiotic and it wouldn't work and then they would give me another. That is what happened to me a few years ago when I was misdiagnosed with bronchitis and was given doxycycline, but it turned out that I had whooping cough and doxy does not work for that so I took it for 10 days for nothing and had to take something else to get rid of the whooping cough. There must be some kind of culture or some test they can do to isolate whatever bacteria you have.

[GtrGrl]

Thanks Beth, I agree. I have had many swabs and no one has found anything but something is very wrong with me. My stomach is sticking out more on one side than the other! They’re planning to do an endoscopy so I asked if they could take samples whilst they do it but they said only if they see something like an ulcer. I really don’t know what to do. I wish I knew what had invaded me but it could also be fungal or a even parasite. I think another conversation is needed but I know they will say ultimately it’s up to me :/

[beth22]

Have they done any abdominal scans like MRI or CT? That would show if you have some kind of abscess, etc. I had MRI of abdomen and pelvis and that would show your ovaries, etc.

[GtrGrl]

Ultrasound has shown thickening of the uterus but they don’t know why and don’t seem too fussed about finding out. They decided antibiotics was a bad idea given my history and now just want to ‘manage my pain’ and send me home. That doesn’t help me with all the other symptoms, which I’m certain are the sign of an infection somewhere. All the literature says if you don’t treat a gynae infection promptly you can end up with chronic pelvic issues. I wish I could just have a load of broad spectrum IV antibiotics like anyone who hasn’t had C Diff would, to kill whatever the hell is causing this.

My gastroenterologist still thinks I have SIBO (I had one positive and one negative test) and wants me to take rifaxamin, generating a whole load more anxiety. He says it is v unlikely to cause relapse but two other doctors have said it’s a bad idea. I’m completely torn.

Anyway, thanks for your replies, Beth.

[beth22]

I took Xifaxan for SIBO because my test was 150%, way over the limit and one of the highest the doctor had ever seen. It went down to 50%, still positive, but I did not take another round. My feeling is that if your test is not in the high range, you can treat this with diet. I was given a guide sheet with what was not good to eat with SIBO. If one test was positive and the other negative, you must have a mild case, but check to see what the percentage was. I hope you feel better. I would still ask about a pelvic/abdominal MRI or CT. My GI doctors ordered those for me.

[Jodiekee]

Could you have all over inflammation? It sounds like everything is inflamed.

[GtrGrl]

This is what I think, Jodiekee. IgA and calprotectin both raised in the past year (indicating gut and/or genitourinary inflammation, apparently) and science now knows that inflammation in body can lead to neuroinflammation due to breakdown of the blood brain barrier. The question is what’s caused it? No one can tell me. I still maintain it was the infection and I’ve either still got it or my immune system is fighting even though it’s gone. I wish scans used to look at neuroinflammation in labs were available for use clinically.

Thanks for your reply re: the SIBO, Beth. Spoke to another GI who said he doesn’t think it’s the answer and agrees antibiotics is too risky for me, esp given how inconclusive the tests were. I might try an elemental diet for a bit to see what happens.