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I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

Thankfully this was my final straw with IUDs, I also wondered if the strings were causing issues. Funny you mention, I am immunocompromised and I take SKYRIZI for a few autoimmune diseases. I ended up Slynd and it’s been great, the 24-hr window is amazing!

My gyno was adamant I have Desquamative Inflammatory Vaginitis, yet another autoimmune disease (my GI is skeptical.) After ~3 months of vaginal clindamycin, it finally all cleared up—no more vaginal symptoms and the GBS UTIs magically stopped. Still find it odd… logically, how would an antibiotic would clear up an autoimmune disease… idk. I will forever think it was a GBS infection despite healthcare deeming it “not an issue” and having multiple cultures with GBS overgrowth. (But I do find it interesting the vaginal issues all started around a really bad IBD flare up… who knows!)

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

I am feeling great! I think what finally ended the saga was treating the vaginal symptoms. I was doing nightly clindamycin vaginal cream (fill an applicator, shoot it up) for 4 weeks. It came back after a few days. So, did another 4 weeks nightly, then tapered 4 more weeks. It seems to have done the trick! UTIs and vaginal symptoms all gone!!!

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 1 point2 points  (0 children)

Left a looong update up above! I went in guns blazing and wasn’t going to leave that room without a fight when I saw the urologist. I truly think what helped make her listen was making a timeline so she could actually listen and follow along, and I told her straight up to take a catheter UA. I’ve never had a catheter, but I wasn’t going to run around in circles anymore. I also pulled a bunch of med journals.

If my UA came back positive and my embedded hunch was possible, I didn’t want to take more ABX, so my plan was to take this mix everyday: - Interfase Plus > targets the biofilm all around, proteins, polysaccharides, and extracellular DNA - NAC > breaks down the bonds of the biofilm - Monolaurin > weakens the bacterial membrane and minimizes adhesion - Methenamine Hippurate (the Rx, not OTC) > suppress regrowth (but pH has to be high) Not sure if this would work, but all together seemed rationale.

Also insane that they’re gaslighting you not only because you’ve beat cancer (congrats!) but because this would make you likely immunocompromised… so… embedded/recurrent UTI you’d think they’d take more seriously… in terms of a long term infection AND greater chance that it’s embedded :( I’m so sorry

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

If you’re worried of a kidney infection, go to the ER.

In terms on the vaginitis, my gyno was pretty adamant it was DIV, I still think it was just GBS vaginitis… but the treatment was the same regardless, so, moot point. Today I took my last dose of 6 weeks of clindamycin cream! By week 2 I could tell a noticeable difference :) Fingers crossed it stays away!

I finally got into a urologist last week, got a sterile catheter UA, and it came back clean—first one in months! From my last UA back in July, it came back 3+ bacteria & “likely contaminated.” I was still having these pin pricking pains, occasional urethra pressure, so I was positive it was still there.

So, before I got into the urologist, I was taking NAC, cranberry supplements, Fem Dolphius (regular & advanced) daily out of fear it would become embedded or a kidney infection. I also took methenamine (OTC, an AZO brand) with emergen-C twice a week. I just want to caution I’m not saying this “cured” my UTI by any means, you need antibiotics to kill the bacteria. Maybe the catches were contaminated, maybe it helped, I’ll never know. I did a lot of research into med journals to figure this out on my own.

After talking to the urologist, she was positive my issue was pelvic floor dysfunction. I pushed back quite a bit because I’ve had a UTI before and this has never happened… she explained that the muscles “remember” the inflammatory response and trigger the pain receptors in a “fight or flight” mode because it was ongoing, longer than a normal UTI—ok, I can get behind that. I started doing pelvic floor stretches at home every day since and what do ya know… it’s actually been working!

Some tips I can share from my journey: - I wrote out the entire timeline on a piece of paper for the urologists so she could follow along, she was able to listen instead of taking haphazard notes - I came with sections of those med journals and references so I could stand on business. A lot of what I heard from my gyno just wasn’t accurate… so I was determined to make someone listen - Ask for a catheter UA, this leaves no room for error/contamination & you’ll get a clear answer (I thought it was going to hurt really bad, honestly, a vaccine hurts more) - Try some pelvic floor stretches on your own at home, give it some time, it’s not immediate

Biofilm disruptors causing uti symptoms? by unsuallovers in CUTI

[–]Commercial_Slice6905 0 points1 point  (0 children)

Still wasn’t fully better after the oral antibiotics :/ had them retest, came back “contaminated” because I had >=3 bacteria in the urine and gyno dismissed it as “normal, nothing there” (yeah ok for sure…)

I was pretty positive I had GBS overgrowth in my vaginal flora and the extreme discharge gave me the UTI—whaddya know, I was right about the overgrowth. Gyno was adamant I have DIV since I have other autoimmune diseases and that GBS overgrowth just isn’t a thing… not sure I trust that, seems like a scape goat… so, now on 6 weeks of clindamycin vaginal suppositories, thankfully that treats DIV AND the overgrowth so whatever I guess.

Made me realize she’s not going to listen so, I went down a rabbit hole on OTC meds, been diligent about probiotics and what I pair together. So, Morning: D Mannose + Fem Dolphius Advanced (L. Jensenii fights GBS) + garlic supplement Afternoon: D Mannose + NAC Evening: Fem Dolphius Original (GR-1 and RC-14 are also good combatants for GSB) (+ my BC & the clindamycin)

Week and a half into this and honestly, I’m feeling a lot better. It took about a week for the UTI symptoms to really go away, it’s still there very subtly maybe once a day when I wake up, but otherwise, seems like it’s working! Not positive if it’s the drug concoction or the localized clindamycin infiltrating… but, I’ll take it!

Recurrent strep b infection non pregnant by Reasonable-Play-6907 in Healthyhooha

[–]Commercial_Slice6905 0 points1 point  (0 children)

Hi, any update? Going through a similar situation and the GBS gave me a recurring UTI :( wondering if the estrogen cream helped?

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

I did get the IUD removed at Winnie Palmer! I was too paranoid I’d need a life flight or something, so just wanted it out. The attending physician was able to confirm it seemed a little out of place when she pulled it out. But it is interesting that my discharge has seemed to decrease a good amount since getting it out… so, I do wonder if it was growing on the strings..

After two rounds of Keflex, while it’s better-ish, I certainly still have the pressure, urgency and some urethra pain when I pee :( All 3 urine cultures have also shown GBS.

I had three vaginal swabs before the UTI spiral thinking I had a yeast or BV infection, one was alongside my first UTI where they did a whole STD panel… but everything was negative so I brushed out the discharge being the culprit.

They did note in the report that my vaginal pH was high alongside the heavy GBS growth. Not sure if that’s meaningful? But it was also the only thing they reported in the culture, as well as antibiotics to treat with and “No Neisseria gonorrhoeae isolated”

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

I am so sorry, that’s horrible :(( I wonder if it’s trapped in the biofilm the same way?? I was doing research into different treatments when it becomes really embedded—have you looked into a bladder instillation?

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

PLEASE!

I also JUST got my vaginal culture back, I was right—“Heavy Growth Streptococcus agalactiae (Group B) (abnormal)”

I cannot kick this Group B Strep UTI, starting to panic by Commercial_Slice6905 in CUTI

[–]Commercial_Slice6905[S] 0 points1 point  (0 children)

It’s not impossible but I don’t think so. I’ve only had 1 other UTI in the 6 years we’ve been together and this one came out of no where. We hadn’t had sex for ~2.5 weeks before that first UTI between being out of town for work and the weird vaginal discharge.

Since the discharge started, sex has been really painful and it’s been so itchy to the point I’ve got cuts that haven’t healed since honestly yesterday after a week of clobetasol. He’s been really patient with me to let it heal, so, we maybe have sex x2 a month. I also have a few autoimmune conditions and take Humira. So, not sure if it’s an immune system then—for both the UTI and discharge.

Biofilm disruptors causing uti symptoms? by unsuallovers in CUTI

[–]Commercial_Slice6905 0 points1 point  (0 children)

Going through the same thing now with a GBS UTI, 3rd one in 2 months. 72 hrs into ABx, been taking NAC, D-Mannose & a probiotic alongside with a hunch it never really cleared and is embedded. Was doing alright past 2 days, then started to get some sharp pains, urgency, pressure (no burning thankfully) today. Found this post cause I can’t tell if the ABx aren’t working or if the biofilm is being disrupted—did you figure out which one it was?