Sign up Latest Topics
 
 
 


Reply
  Author   Comment   Page 1 of 2      1   2   Next
Sophs50522

Registered:
Posts: 92
Reply with quote  #1 
Hey everyone. As you all know i seen the prof on thursday and he diagnosed me with a chronic Uti.
I suffer horrific anxiety and its now spiraling out of control due to the thought of the antibiotic treatment. My gp doubted his treatment and said if your urine come back clear on a culture from us Then he is most likely spotting contamination.
Arggh. Dam gp's.
Can i just ask a few questions in hoping someone Will help?
1. Have anyone had any side affects from taking high doses?
2. Is a chronic uti the same as a biofilm/embedded infection?
3. Has anyone here succesfully healed after his treatment?
4. Has anyone been to see him thinking they have a chronic uti but urine shows nothing?

Thank you
Sophs
Moderatorsusan

Moderator
Registered:
Posts: 1,065
Reply with quote  #2 
Ok lets try to look at the positives first. Well you have had your appointment with Prof and you have been diagnosed with a chronic infection and been given a starting treatment plan. Thats a positive. I assume in all the years other doctors have treated you, you have been told they are not sure what is wrong with you and tried you on lots of stuff that simply hasnt worked. Well now you have seen Prof and he has said using his urine microscopy that lo and behold your urine sample shows that you have an infection. So thats a tick.

Secondly a chronic UTI is exactly the same as a biofilm or embedded infection. UTI infections are normally classified as acute, recurrent and now chronic. Acute is when you experience a UTI for a few days and it clears up either via your own immune system fighting off the infection or with a short course of antibiotics. Recurrent is classified as having 2 or more acute UTIs in a year and again clears quickly. Chronic infection is an acute UTI that has simply never cleared up and the symptoms carry on with the infection embedding itself in the cells of your bladder wall and developing a biofilm to protect those cells.

Prof is very honest with patients and if they see him and he feels it is not an infection but another urinary issue then he will tell them and provide a treatment plan. Examples are Overactive Bladder or a Neurological bladder condition that is not caused by infection. And yes there are plenty of patients who have seen him whether nothing shows in the urine. It’s one of the reasons why his letter of appointment advises that you should not drink too much in the three hours leading up to the appointment otherwise you make your urine too dilute. Too dilute and you are simply providing him with a bottle of water rather than a urine sample.

The big problem for your GP is that he has no guidance from the government medical authorities about people coming in with recurrent and chronic infections because there aren’t any. Even the government medical authorities admit they need to provide these but as yet nothing has been written. So he can only manage acute UTIs and he is completely reliant on tests that are now proven to fail 50% of patients because the tests don’t pick up infections. So a further positive for you is that you are now seeing someone who through his own more advanced testing can clearly see that you have an infection. Up to you now, who do you want to put your treatment care in the hands of - your GP or Prof?

As for healing, yes there are plenty of patients who have been treated by Prof who have felt very much better and are now symptom free. Prof recently published a paper based on ten years of treatment with over 600 patients and 64% were much better and with a further 24% very much better. BHUK should have a copy of this research paper if you want to read it.

How quickly patients have got better is very dependent on the individual patient and how their immune system copes with the infection and also whether they have any other health issues. On average Prof sees patients who have been in the “system” for UTI issues for 7 years but he is also seeing patients who have struggled with UTIs for over 30 years. No-one should ever put a date on how quickly they heal regardless of what health condition you have. That way lies negativity if things don’t go exactly to plan. It really is baby steps in treatment and Prof has seen this time and time again so he is completely used to the ups and downs of treatment. And remember there is no “cure” for anything. There is nothing to stop you getting another UTI at some stage in your life.

What you can do is help yourself too with all of this. So look after your immune system, try to reduce the stress and anxiety. Bacteria love stress and your body cannot differentiate between physical and emotional stress so ramps up your cortisol levels which drains your immune system and energy levels. Lots of people in treatment worry dreadfully understandably because a UTI is utterly soul destroying and can wreck lives but they have taken steps to try to help themselves by working with a counsellor or taking a course of CBT, spoken in detail with family and friends so they understand what they are going through and give them space and time.

Finally all medications have side effects. It’s a chemical that you are putting into your body. One of the things Prof will have discussed with you at appointment is this. You should have advised him if you have had reactions to anything in the past or have allergies such as that to penicillin. When in treatment especially in the early days it’s absolutely vital you keep in touch with him by email in case symptoms worsen or you develop an issue with an antibiotic. There can be switches in medication, this is incredibly common so don’t feel disheartened if this happens. I assume you have read this paper he prepared for patients and GPs, if not then do read it and also give a copy of it to your GP. He may learn something.

http://www.chronicutiinfo.com/wp-content/uploads/2017/06/The-Treatment-of-Lower-Urinary-Tract-Symptoms-Prof-JML-clinic-for-GPS-and-Patients.pdf

We all know that one of the issues with taking antibiotics is thrush so you need to be prepared for this in case it happens. Prof is completely used to patients developing this and can help with treatment but there are some suggestions to help here and also a link about probiotics. Prof is very keen that patients use a good probiotic during treatment and in particular make Kefir which really helps with getting the good bacteria in the gut. Some information to help in the links below with probiotics and with dealing with thrush. The recommendations included are those made by people in treatment with Prof and other chronic UTI specialists.

http://www.chronicutiinfo.com/day-to-day-management/probiotics-kefir/

http://www.chronicutiinfo.com/day-to-day-management/treating-thrush/


Sophs50522

Registered:
Posts: 92
Reply with quote  #3 
Thank you susan for writing all That. That's Really helpul!
I will start the treatment and hope for the best :).
Thanks again
X
KJW

Registered:
Posts: 23
Reply with quote  #4 
Hi Sophs, If it helps a bit, I have been seeing a really senior urologist in the area where I live (which has a big teaching hospital) so I feel like he knows what he is talking about,  and he knows the professor and his treatment plans and he is really happy and 100% supportive that I am going to see him. The Urologist also told me that there are other groups of people such as transplant patients or people with chronic asthma who are on antibiotics for life which made me feel better. 

Hope you feel better soon.

__________________
Kirsty 
Sophs50522

Registered:
Posts: 92
Reply with quote  #5 
Thank you KJW. That's been really helpful and have eased my mind a bit. I had a bit of a panic attack that i Would end up with organ failure or something lol
Will start the treatment with some positive thoughts now!

I Really do love this forum. So many supportive people.

Thanks again! :)

Sophs50522

Registered:
Posts: 92
Reply with quote  #6 
KJW can i ask what probiotics you take?
Will two 2 million bacteria chewable ones a day be okay do you think? Or would i need more.
Moderatorsusan

Moderator
Registered:
Posts: 1,065
Reply with quote  #7 
Have a read of this - some recommendations from those with chronic UTI in here.  Its all about the billions.

http://www.chronicutiinfo.com/day-to-day-management/probiotics-kefir/

L8tti_x

Registered:
Posts: 37
Reply with quote  #8 
I'm seriously confused about probiotics.

Last time I asked prof he said taking them wasn't evidenced based so I didn't bother???

I'm seeing him tomorrow so I will ask again.

I'm in a total muddle...

__________________
Lotti
Moderatorsusan

Moderator
Registered:
Posts: 1,065
Reply with quote  #9 
Interestingly Prof is now advising people to make their own Kefir because of the issues with thrush and antibiotics, He knows that some patients benefit from taking probiotics particularly if they are prone to thrush so whilst he will always be an empirical mpevidence man, if it’s working for patients he is happy for them to take them or make Kefir. He notes this in patient letters to GPs and the patients.
L8tti_x

Registered:
Posts: 37
Reply with quote  #10 
Thanks Susan.

I don't recall seeing anything in his correspondence re probiotics to date so I presume this is a recent addition?

I will have a chat with him tomorrow and work out what to do going forward.

Fortunately I haven't suffered with thrush but I do worry I am destroying my gut health.

__________________
Lotti
Sophs50522

Registered:
Posts: 92
Reply with quote  #11 
L8tti do you ever suffer with thrush being on the antibiotics?
I would get it every time i took antibiotics in the past. Couldn't think of anything worse having thrush every week.

Ive just bought 20 billion probiotics and will take them 2 hours before my meds.

Will soon see if they work lol
barbie

Verified BHUK Member
Registered:
Posts: 50
Reply with quote  #12 
I am one of the Prof's patients and now consider myself to be cured.  I take one gram of Hiprex twice a day and that keeps me entirely free of symptoms to the extent that I don't even think about it.
Sophs50522

Registered:
Posts: 92
Reply with quote  #13 
That's great news barbie!
Really hoping he cures me too.
L8tti_x

Registered:
Posts: 37
Reply with quote  #14 
I have never suffered with thrush thank goodness but think I'm going to try kefir... it can't do any harm right? Sounds like it tastes gross though!

Barbie: how long were you on antibiotics for?

__________________
Lotti
barbie

Verified BHUK Member
Registered:
Posts: 50
Reply with quote  #15 
I took Nitrofurantoin from October 2014 to August 2015.  I started to experience some side-effects so the Nitro was changed to Cefalexin which I took until January 2017, so that's two years and three months in total.  

You can get Kefir from Waitrose and Sainsburys now.  They do flavoured ones so they're not too gross.  You can make your own http://www.happykombucha.co.uk  which works out much cheaper, but it's a bit of a faff. 
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

Easily create a Forum Website with Website Toolbox.


This Forum is provided by Bladder Health UK and is intended as a place for Sufferers of Interstitial Cystitis, Bacterial Cystitis and Over Active Bladder, together with their family & friends to gather, online in a positive exchange.

BHUK is not a medical body & do not claim to have medical knowledge. It is not the intention of BHUK to provide specific medical advice, but to provide users with information to better understand their health & to manage their suffering.

Specific medical advice will not be provided & BHUK strongly advises that you consult your GP/Consultant/Urologist for professional advice.

We would hope that users of these forums will conduct themselves in a courteous and respectful manner. Any conduct not consistent with this standard will be deleted immediately and the poster may be restricted and/or terminated without warning.