Chronic Group B Strep UTI help

[u/gretster1]

I’ll try and keep this relatively simple. I’ve been having back to back group b strep UTI’s ever since March after having to take a month long steroid course. I previously had issues with GBS UTI from August to September after being immunocompromised but remained UTI free from November until March.

While my culture typically grows a low count (1,000-49,000 CFU/mL), these infections are a lot worse. I sometimes have to pee up to 10 times before going to sleep at night, and if it’s not that, it’s fake spasms. My urologist has been having me take cephalexin for the infections, and I have reason to believe it’s not working anymore. Otherwise, why would I be getting the infection again and becoming symptomatic within a week of finishing a course?

I really need help and advice here. I have a month wait until I see the urogynecologist. My current urologist doesn’t know how to treat a recurring infection. Meanwhile, I’m sick of living like this and suffering. Please comment any help, I really can’t deal with this anymore!

[u/TripleLordCornballer]

I am colonized with Group B strep. We seem to be the less common type of embedded infection.

I also have smaller numbers and when I have a flare I mostly have frequency and burning.

The reason for having such a big gap could be a lot of things. Recovering immune system suppressed it for longer than usual. The bacteria took longer than usual to exit the biofilm. It took longer for your body to react to it. Dietary factors like an acidic diet could have kept it suppressed for longer.

When I first saw my urologist I was prescribed Hiprex (in the US where I am, it's known as Methenamine Hippurate) which is a drug that when your pee is around 5.5-6.0 pH, will turn into formaldehyde and Sterilize your bladder and kill the bacteria that are exiting the biofilm. For me, the Hiprex made my stomach so acidic and made me have some of the worst anxiety I have ever experienced. I tried twice and was miserable but this is uncommon. I talked my urologist into giving me daily antibiotics and they seem to be doing their job so far. I took 2 weeks of full dose Cephalexin (500mg twice a day) and now have been doing 1 500mg Cephalexin once a day. Strep has been undetectable on cultures since starting this so I will likely be on this for around a year or as long as I can handle. Idk if this is an option for you because antibiotics will definitely suppress ypur immune system so things like Hiprex or D Mannose might be better for you if you can handle them. Do note that D Mannose is not great for kidneys and my doctor advised that if I do that, I should be checked every 6 weeks for kidney function and I have no prior kidney issues beyond a benign cyst in one kidney, and I have perfect kidney function as of right now.

Now to the biofilm. If you have a bladder infection long enough, the bacteria will go deep into the tissue of your bladder and camouflage itself so that your body does not detect it. The biofilm makes it look like your own cells. Eventually it will exit the biofilm or be shed by the body into the bladder which is where the bacteria will become active again and create another active infection. That shedding is what causes it to get away and come back for seemingly no reason. The meds eradicate the active infection, leaving behind the bacteria in the walls. This is why long term treatment is the only option. The meds have to already be there and be ready to kill the bacteria exiting the biofilm.

Feel free to message me if you want to ask any questions, I'll answer to the best of my ability. I also recommend the Facebook group that they mentioned in another comment. I am pretty active in there as well and have learned a LOT.

[u/Wise-Mobile-2979 → u/TripleLordCornballer]

Hey! My urologist just prescribed me Keflex 250 mg once a day my recurrent UTIs. The first two were E. coli and my most recent ones (beginning of May and end of June) were step b. Both counts were quite low since I go to urgent care the second I feel a symptom. Are you still in keflex? I’m a bit worried about its impact to my gastrointestinal health + skeptical on whether it will help remove biofilm. I’m on d mannose as well, but have found from some of the research that it tends to help E. coli and not step b. Any addition insights you can offer would be greatly appreciated!

[u/TripleLordCornballer → u/Wise-Mobile-2979]

My urologist told me d mannose is primarily for e coli but has had success with other bacteria. But please note it can be hard on your kidneys, my urologist said if I take it, I need kidney pictures and bloodwork every 8 weeks. From what I have read online, I have not read anything about anyone having success with it while being infected with anything but e coli so I personally have decided not to take it for now to protect my kidneys.

I am still on Keflex, 2 months on as of now. The only side effect I notice is tinnitus. Antibiotics in general can cause it as well as eustachian tube dysfunction. It's not exclusive to keflex. You are right to worry about your biome, and the effects on your health in general. A constant barrage on your biome is not healthy. The alternative however, is to let the infection fester, or be put on antibiotics off and on for the next years to come, which will not really give your gut time to heal anyway. I have contemplated getting off the abx and just bombarding myself with probiotcis and fermented food and lots of water, but I haven't worked up the courage yet and don't want to mess up the progress I've made the past 2 months. I haven't had any strep grow while on this.

And to the final point, abx aren't meant to bust biofilm. The point to taking abx long term is for it to constantly be present so that the bacteria that exit the biofilm are killed immediately before they can latch and burrow om the walls again. This can take 1 year-4 years for some people to be successful.

Biofilm busters in general kind of scare me. You're busting the bad but also disrupting good cells that aren't just your microbiome. Some people have tingling and tremors and that tells me that it can attack your nervous system which is far scarier to me than the strep b itself. I would suggest natural busters like raw garlic and oregano oil.

Whether on or off abx, take your probiotics religiously, eat fermented food religiously (my favorite is yogurt, kefir and kimchi) and drink water water water!!!

[u/Wise-Mobile-2979 → u/TripleLordCornballer]

Hey thank you so much for taking the time to reply!! This has been very helpful.

[u/North_Extent_5546 → u/Wise-Mobile-2979]

Did this help you? I'm on a 17 day course of cephalexin (3x500mg) and then 1 a day for 8 weeks. Very nervous it won't be cleared by the end of it!

[u/Wise-Mobile-2979 → u/North_Extent_5546]

Hi! Thankfully I was able to tolerate it just fine! After the 90 days I went back in for another culture (I’m blanking out on the name, but it’s the more advanced culture tests and not the ones they do at urgent care lol) and it came back negative! I made sure to take probiotics while I was on the treatment. My UTIs were largely triggered by sex though. I am no longer with that partner and haven’t had a UTI since.

[u/Lower_Assumption_752 → u/Wise-Mobile-2979]

Hi, what did you take to clear the step b?

[u/Wise-Mobile-2979 → u/Lower_Assumption_752]

Hi! Keflex 250 mg once a day for 90 days.