Has anyone tried the oral UTI vaccine?
Hi everyone I have a complex history of recurrent UTIs from a teenager (now 63 yrs). Partly due to some congenital anatomical defects in one of my kidneys (that was corrected) and likely due to a genetic disorder I carry which can misfold proteins and impacts my immunity. I have seen many specialists including travelling to Mayo Clinic from NZ about 10 years ago to seek help. Over the years I have run the gauntlet of natural meds and antibiotics. Everything I tried works for a while and then doesn't...
I now face failing antibiotics (currently doing high dose rotations of the last 3 ABs I can tolerate and still not getting rid of the infection). I am about to start on a sublingual E coli vaccine called Uromune. It seems to be quite effective in the studies. Does anyone have any feedback on this fairly new vaccine?
Im interested in any feedback on how others have managed medically when at this stage.
The battle with E Coli is exhausting 🙁
Thanks, in anticipation 🙂
Interested in more discussions like this? Go to the Kidney & Bladder Support Group.
Yep, been there.. my last hope is the T-cell vaccine fore the bladder lining
https://liveutifree.com/uro-vaxom/
Hi @yanina
Thanks for your reply, and Ive got my fingers crossed for you that the T-Cell vaccine is successful.
I looked at the link, very interesting. I do believe it is a biofilm issue with people like you and I. Are you going to try the direct application of the vaccine into the bladder?
I did a procedure in about 20 16 where once every couple of years I did daily self cathetisation over 30days with a gentamicin solution and had pretty good results with that for about 5 years, until like everything, it just stopped working. This treatment was recommended by the Mayo specialists that I saw.
Did you get any benefit at all from the Uromune?
I have over the last few years been trying to balance my TH1 TH2 responses with Pure Encapsulations Th1 Support and TH2 modulator (developed by Dr Samuel Yanuck). I had a really good run with these for about 18months (which was incredibly surprising for me), but like everything else it just stopped working. Perhaps the balance changed, and I need to change the regime to a greater TH1 influence (based on what I just read in the link you sent).
I need a plan, a safety net, so over the next week I am back to see my Dr and Urologist. The antibiotics have certainly run their course.
Yeah, I was doing plenty of bladder instillation also. Gentamicin is active against a wide range of Gram-negative bacteria so no wonder it helped. For me, I've got to the point that all the antibiotical treatments over past 20 years have developed to the resistant super bugs in my intestine like MDR Klebsiella. My only option now is my immune system which is weak and compromised due to the other health conditions which I got treating UTI. In addition, all the treatments have killed my colon microbiome so I am prone to C. diff. I don't have any other option than T-Cells at this point. The bladder still hurts lol (I didn't feel pain only for 3 years during sexless life after last IV treatment Levofloxacin + Ornidazole until the first intercourse obviously when the bacteria got pushed to the bladder again)
Im so sorry to hear that, I feel your pain.
I have miraculously thus far avoided the microbiome decimation which I can only put down to the intensive use of commensal probiotics, urinary specific probiotics and sacromyces boulardi (beneficial yeast) throughout my lifelong use of ABs.
I am a naturopath of 30 years so was always looking at various treatments and support for my bladder/kidney and urinary system, which has given me windows of non-AB use, but like everything only is useful for a time. I always got my partners to use condoms as this was a good protection against that trigger for infection. I now have no desire or energy to give to an intimate relationship; due to the impacts of this horrible condition I live with.
Did you have IV ABs as part of your treatment programme or was it given as an emergency treatment? I have just been talking with my Dr re IV when needed, but he says that will only be given when you turn up to hospital septic. When I am at my worst I can barely move from my bed to the toilet let alone waiting in an emergency room for hours. But I will be seeing my favourite urologist next week for another view on this. Although its crap to have to deal with this chronic condition, there is some comfort in talking with someone who knows the journey, so thanks for your communication 🙂
Hi JosieGlow, I have been dealing with recurrent UTI's and abx usage and am trying to build up my gut and vaginal biome with probiotics. Can you tell me what probiotics you have successfully used dosages and frequency. I a doing vaginal Seed probiotics, drink kombucha, eat yogurt and kefir and try to eat kimchee or sauerkraut as often as possible thanks for any insight!
Yeah, same here..no sex, no worries lol
Emergency treatment. The infection was introduced during yet another round of bladder instillations and after 2 days, i've got the worst cystitis when my urine became pink from blood. It could have spread higher to the kidneys, therefore this IV ABs protocol was prescribed in the hospital. Yeah, its impacting life heavily, wrecking relationships, etc.
Hi @recoverymom 🙂 Sorry you are in the club, but here we are, and grateful to have this group.
I have trialed all sorts of probiotics, but the ones I feel have helped the most are Metagenics Ultra Flora Intensive Care and Clinicians Flora Restore. When I have an infection, I use them together and continue to use them together after I stop the ABs. When I am on rotational ABs for longer lengths of time I just continue to use both of them. When I have a reprieve from the infections, I use the Flora Restore on and off. My prebiotics are in non-fermented foods.
From time to time, I would use Mega Sporebiotics (with bacillus species).
If you google these products you will get the names of the specific species and strain, plus dose per capsule. Hope that is helpful.
I personally found the fermented foods did not agree with me, too acidic. I felt that they could potentially add to my risk of candida, thrush etc. being I was on so many ABs so much of the time and adding to yeast pathogenesis. I am pleased to say I have never had thrush, candida or gut issues. The vaginal probiotic seeding is valuable.
I am currently working on trying to down regulate quorum sensing and increase biofilm disruption, targeting the embedded bacteria. I have done this in the past with some limited success.
Take care, its a hard road we travel.
I have been following this thread / discussion as I a prone to UTI’s since my teens. I’m 68 now. I’ e never had anything as bad as what you other members are describing. I’m familiar with lots of antibiotics and the super bug problems when they become resistant to antibiotics. I’m also familiar with probiotics and their use. Those of you posting here have gone way beyond my experience! I had NO idea there were any vaccines for UTI. You are sharing your stories and supporting each other. Way to be encouraging and spread hope. Thank you.
Thanks Cheryl.
I think desperation can make one very committed to finding out as much as possible about potential treatments. Being chronically unwell is also very isolating even with a great network of friends and family. This is my first real discussion with other people who travel a similar road and it's already been helpful 🙂
I have found the public system of urology here in NZ very challenging in the way they treat patients with chronic UTI, luckily though I have a lateral thinking urologist (for the last 25 years) who I see privately every few years, so we talk through potential plans, and he supports me as he can.
I always try to think ahead of what may be in front of me. Scary but necessary.
@yanina @recoverymom @cehunt57
I thought this research article might interest you all.
The benefits of L-Reuteri on gut and urinary health, biofilms, inflammation, healing and pathogen reduction. https://pmc.ncbi.nlm.nih.gov/articles/PMC5917019/
Years ago, just using high doses of L Reuteri I treated a UTI infection; However, the doses I used were so high it was unsustainable and was not the answer on its own, but certainly it is part of the management equation, and I think gives us a beneficial edge.
The strain I use is RC-14