1. < Kidney & Bladder

Has anyone tried the oral UTI vaccine?

Posted by josieglow @josieglow, Jun 3 4:14pm

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 🙂

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yanina | @yanina | Jun 8 10:55pm
In reply to @josieglow "Thanks Cheryl. I think desperation can make one very committed to finding out as much as..." + (show)
@josieglow

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.

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@josieglow to prepare for potential outbreak and make a plan, I would recommend sequence your urine for all the bacteria to obtain the full picture.
The standard lab test only shows overgrew ones higher than 10^5
To obtain anything below 10^5 and its genetic AB sensitivity:



Because those stamps are more likely start growing when the necessary conditions come along (lower immunity, etc)

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1 reply
recoverymom | @recoverymom | Jun 10 1:52pm
In reply to @josieglow "Hi @recoverymom :) Sorry you are in the club, but here we are, and grateful to..." + (show)
@josieglow

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.

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Thanks so much JosieGlow for this complete description and your encouragement!!!

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1 reply
josieglow | @josieglow | Jun 12 9:29pm
In reply to @recoverymom "Thanks so much JosieGlow for this complete description and your encouragement!!!" + (show)
@recoverymom

Thanks so much JosieGlow for this complete description and your encouragement!!!

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Hi @recoverymom I was just wondering what species are you using for vaginal seeding?

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1 reply
josieglow | @josieglow | Jun 12 9:30pm
In reply to @yanina "@josieglow to prepare for potential outbreak and make a plan, I would recommend sequence your urine..." + (show)
@yanina

@josieglow to prepare for potential outbreak and make a plan, I would recommend sequence your urine for all the bacteria to obtain the full picture.
The standard lab test only shows overgrew ones higher than 10^5
To obtain anything below 10^5 and its genetic AB sensitivity:



Because those stamps are more likely start growing when the necessary conditions come along (lower immunity, etc)

Jump to this post

Thanks @yanina. An informative watch 🙂 Will def be looking at doing that.

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recoverymom | @recoverymom | Jun 12 10:34pm
In reply to @josieglow "Hi @recoverymom I was just wondering what species are you using for vaginal seeding?" + (show)
@josieglow

Hi @recoverymom I was just wondering what species are you using for vaginal seeding?

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Hi JosieGlow! I use a vaginal probiotic called Seed. I am not sure if it is working at all. I also use a vaginal probiotic called gynophilus restore whih is baically laccasebacillus rhamnosus Doderlein. However, I have had back to back UTI infections and have had to take ABX and it has been destroying my vaginal biome and it hurts down there very much. I am trying to be brave as I face this but its challenging, I feel afraind but am doing my best,

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1 reply
josieglow | @josieglow | Jun 12 11:41pm
In reply to @recoverymom "Hi JosieGlow! I use a vaginal probiotic called Seed. I am not sure if it is..." + (show)
@recoverymom

Hi JosieGlow! I use a vaginal probiotic called Seed. I am not sure if it is working at all. I also use a vaginal probiotic called gynophilus restore whih is baically laccasebacillus rhamnosus Doderlein. However, I have had back to back UTI infections and have had to take ABX and it has been destroying my vaginal biome and it hurts down there very much. I am trying to be brave as I face this but its challenging, I feel afraind but am doing my best,

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I know it's very scary when there's no reprieve.
Things I can suggest which may or may not be things you have done/trialed.
Vaginal pessaries. These can be made by an experienced herbalist. I have used these in clinic with good results. Marshmallow, Calendula, Wild Yam, Licorice in a coconut or bees wax base (or something similar dependent on symptoms. Make sure alcohol is evaporated off if using tinctures).
Pure Aloe Gel (only if there is no breakage in the skin, always patch test) If the area is hot keep the aloe gel in the fridge.
We also have a product in NZ called Kolerex which is very helpful. (has aloe in it) https://www.healthpost.co.nz/kolorex-vaginal-care-cream-fhic-p Not sure where you are and whether you could order it but its very cheap, soothing and effective.
Have you done a Vaginal microbiome analysis?
What are your oestrogen levels like?

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