Possible embedded UTI?
Posted , 5 users are following.
I'm 22 years old and started with symptoms when I was 17. It started with frequency and then a few days later I developed an uncomfortable feeling of pressure over my bladder. I went to walk in centre and there were white blood cells in my urine and they prescribed me a 3 day course of antibiotics. I didn't feel any better after that so went to my GP and they gave me a 5 day course and sent urine off for culture (came back negative for anything.) Over the years, I've been getting flare ups every so often of either random frequency/urgency or the pelvic discomfort feeling with frequency. My urine has been tested many times but has only ever shown white blood cells. I'm currently seeing a urologist who thinks it's interstitial cystitis but when I came across info on embedded UTIs I thought it could be a possibility. I never had any bladder issues before my first 'UTI' at 17. I'm not sure if this could have caused it but I was on the last few days on my period and I didn't change my sanitary towel for 2 days I think (disgusting I know! Don't ask 😕) shortly after that the symptoms started. Could it be possible that all my issues are actually stemming from an embedded UTI? Any advice would be greatly appreciated.
1 like, 5 replies
Micklemus Elly97
Posted
As you rightly say some bacteria can be embedded in the tissue..... some bacteria can 'hide' in the tissue. Some can be in the body for decades and can reemerge later in life........ Some bacteria can be encapsulated by the cells of the immune system but are crafty enough to attack healthy cells when they become active...... Research is relentless but one bacteria that has not been eradicated from the world is TB........ I am told only certain doctors know TB and that was told to me by one of the most astute doctors who specialize in that subject. I think even she does not know all there is to know about it because I think it would take several lifetimes to achieve a full
100 % knowledge about it and other complex medical subjects and especially those subjects that cannot be seen with the naked eye! Other bacteria can be as above but is not TB.
Some bacteria can be killed off completely by the immune system but as said some can be kept quiet for an unknown length of time but can then reinfect.........
I've found through years of experience that some doctors don't seem to believe their patients.
If you feel you are not getting resolution in getting sorted out write to 'them'. This is essential
for future reference........ There are more tests and lab knowledge available nowadays than ever before........ They must be coaxed somehow into using those facilities. Keep badgering and make the listener or rather READER read. If you write they will know you are keen.
Being complacent has never been my scene but I as do others make mistakes. Upturn every stone until you are happy with how things are.
sarah556677 Elly97
Posted
yes it is possibly be . i have had the same issue started in Aug 2019 . several short courses of antibiotics and nothing actually completey got rid of the infection .
GPs were dismissive because my dipstick & culture were coming negative .My GP started to kind of put me on IC list . which i was sure i didnt have .
i took the matters in my own hand and found out about embedded infection . and after some more research i found out the info about the very few doctors who are treating embedded infections with full dose long term antibiotics succesfully . I went private because NHS had no clue whats going on with me . I saw Prof Malone Lee . I have recovered significantly since under his treatment . you can join f book group called embedded uti support/advice group
It contains a alot of info about embedded infection and the contacts of Drs that can help treat it .
Please dont accept the diagnosis of IC . 80 % of embedded infections are misdiagnosed as IC .
You need to rule out all the possible causes before accepting IC . so get checked for embedded infection. And i m pretty sure you will find an answer to your chronic symptoms and also a treatment .
Micklemus sarah556677
Posted
What an enlightening post..... I note you have had to resort to private healthcare which should not have to happen........ I could write a book about my decades trying to resolve the issues with my waterworks but have not been able to resolve what was wrong exactly. I get some answers but very few but at least I have a specialist who says -----It's on the cards that I was right to take Ciprofloxacin in addition to what was prescribed by my doctor....... Mark my words all concerned close ranks as is the saying & yet there is supposed to be 'candor' which there definitely is not.
Being 'on the cards' or 'it follows' , is not a conclusive resolution and it is not meant to be. What it amounts to is a smoothing over of the problem.
I am considering my position whether to blow the whole thing apart so as to protect others...... All data must be on paper which in my case proves it right back to over 40 years ago.
The none referral by any doctor to my previous medical history is the main item of the mistake that was made. It has been confirmed that only certain doctors are aware of certain clinical technicalities regarding certain clinical problems.
If they don't know then why don't they ask someone who does?
One would think that certain bacteria that is embedded is embedded via the bloodstream? I've said it dozens of times why aren't the tools to hand used?
There is now more expertise available re the isolation of bacteria that there ever was through the PCR test. This item alone seems to be handles as if it were the secret service!
sarah556677 Micklemus
Posted
Hi Micklemus
i am coming back here after a long time .
I still really appreciate all the information i have gathered from you . it all made sense to me .
You are right , utis are still being treated on the basis of dipstick/culture that are unfit for the purpose .it is proven by PCR test that lab cultures are inaccurate .
I was diagnosed with embedded infection 8 months ago by a specialist Prof Malone Lee who is successfuly treating chronic / recurrent infection . i am in treatment since thn and about 90 % better . from being house bond for 3 months with no life . I am living a normal life once again .
Prof Malone Lee explained to me that the bacteria penetrates inside the bladder wall and invade the bladder cells . This is called intracelluler / embedded infection .
Antibiotics cant penetrate inside the cell .
Therefore short courses of abx doesnt eradicate the infection . But at some point due to natural shedding of epithelial cells bacteria falls out .
Bacteria also burst out every now and thn to multiply and thn to reinfect virgin cells .
This is the reason why we need a long term high dose course of abx so that as soon as bacteria is exposed it will be killed by the abx in our system .
Prof Malone Lee is a legend and has spent 40 years of his life researching and finding the answers to chronic / recurring utis .
you can follow him on twitter if you like . He is a very wise man .
He is a part of research and development of nanobiotics with AtoCap . which hopefully will be the answer for uti sufferers .
Nanobiotics molecule will be big enough to carry the antibiotic and small enough to penetrate the cell . currently Antibiotics are too big to enter cells .
this technolgy is ready to go for human trials and needs funds . they are working to start funding campaign soon .you can search Atocap website for more info .
Just wanted to share the valuable information i have learnt . it might help the people who are suffering from utis who are ignored and brushed off by the GPs and urologists . . i have been brushed off by the GPs so many times and left to live with the uti for the rest of my life . i didnt give up and found the answers and right treatment .
Micklemus sarah556677
Edited
What a splendid article and I must say thank you for the acknowledgement.
I am very happy of course that you have found some resolution to your problems and the sooner doctors realise that UTI's can be miserable life changing situations to live with the better.
My infection and that is what it was was misdiagnosed for years if not for decades. When there was blood in my urine 1978 it was the year I had confirmation through x-ray of my lungs that I had previous tubercular infection. Nothing whatsoever was investigated or a word spoken or raised from that time and during lymph node abnormalities. These irregularities occurred 1990 and then again 2013. Low and behold the more prolific episode 2013 was during a scan due to waterworks problems!
I did not receive correct diagnosis or treatment and there was absolutely no resolution what was infecting me and I was told I could have a prostate
cancer hiding at the back of my prostate when in actual fact the shadow was seen at front right by an MRI scan that I requested in 2017. I refused a biopsy which I was told would entail 33 needles pushed into my prostate!
I feel strongly that this ordeal was advised to dissuade me to do it! I was told that if I did not go in for the biopsy It would not be possible to say if the shadow was cancer or TB.
One thing I related to 'them' was the fact that my PSA went from 13.7 before the Cipro for 33 days down to 7.4 after that treatment.
Many say that the antibiotic course would not alter a cancer. It is interesting to note that all of my symptoms that could have been TB of the urinary tract were eradicated after the antibiotic course.
It has never been suggested discussed or proven that my infection or lymph node problems was or was not TB based. This was because my medical history has never been read prior to my bringing that fact to medical attention. I am now 'pressing the point' which none can ignore and latent TB is now firmly on my medical records.
Not many doctors know a thing about Tuberculosis but times they are changing. The Actiphage blood test will most certainly 'put the cat
amongst the pidgeons' as they say.