Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 4 of 6      Prev   1   2   3   4   5   6   Next
Moderatorsusan

Moderator
Registered:
Posts: 892
Reply with quote  #46 
I'll try to cover off your questions.

With symptoms returning yes it sounds like the infection hasn't cleared. So yes higher dosage abs for a longer period of time would have been ideal but sadly doctors are limited by results and unless a positive sample comes back, you are in for a fight.

In terms of the D Mannose ideally you need to space this out through the day. A maintenance dose is 2-3 times a day but some go higher even when not in a flare. The mannose should sit in your system for an hour before you urinate.

As for the prevention of bacteria multiplying using D Mannose, have a read of this. It explains the science far better than I could but E Coli have fingers called pili which in essence stick to the bladder wall and invade the lining of the bladder. The Mannose prevents this

https://www.sweet-cures.com/uti.htm

In terms of the pack you receive from COB when you first join, you will need to request the bacterial and biofilm packs to be sent to you as these aren't included. Full details of both specialists in the biofilm pack.

Don't forget your gut in all of this and make sure having taken antibiotics you get a good probiotic down you to get the good bacteria back in. I'm afraid Actimel and other drinks won't restore the bacteria but VSL 3, Culturelle or Syntol AMD will. They are expensive but will help get the bacteria in there whereas the yoghurt drinks won't get past your stomach acids.

As for the cystoscopy, explore all routes before this unless scans show up a specific physical problem. It only adds more bacteria into your bladder and leaves you feeling very uncomfortable.
suzyj

Registered:
Posts: 51
Reply with quote  #47 
Thanks for the info. I have now started D Mannose again and already after 2 I can feel the symptoms improving. I have an appointment with urology department next week but am not going to  have the cystoscopy as I am sure there is a low level infection present and don't want to cause myself any more problems.  I am going to ask for antibiotics if any infection shows up. I followed the link on D Mannose and read the scientific bit - there is a mention of D Mannose in the Daily Mail today - link below. It is below the main article on osteoporosis:

http://www.dailymail.co.uk/health/article-3448443/Should-MEN-pills-Osteoporosis-too.htm



I have never heard of VSL 3 or Culturalle and I spend a lot of time browsing in my local health store!! I wonder if kefir would do the same as I drink that sometimes. I'll have a look to see whether they sell these products.

I have just had another thought - would recurrent urinary tract or on going infection have to be declared for medical travel insurance ( I imagine it might be stupid not to). Does anyone have any experience of this? I hope I won't have to cancel my holiday (it is not until September anyway so I am optimistic).


There is certainly a lot of very useful information to be found here and it is good  to be able to go to an appointment with more information and knowledge.
Moderatorsusan

Moderator
Registered:
Posts: 892
Reply with quote  #48 
Glad the D Mannose is helping, do stick with it and you can always take a daily maintenance dose once things settle to keep the bugs away.

Kefir can certainly help but it is high in histamine so if you have any allergies just be careful. Your local health food shop should be able to recommend something probiotic wise or if not I'm sure the ones I have mentioned can be purchased online. Optibac is another good one.

I always think it's best to know as mich as possible about your condition. Those in white coats don't always have the answers and why go through unnecessary invasive tests unless something serious like cancer is suspected. If it turns out to be a low grade infection a cystoscopy won't help with that and will probably only stir things up.

It's certainly worth mentioning on your travel insurance about your infections. However you may end up paying more or it being excluded. Remember if you have an European Health Card (replaced the E1-11 form) that will cover you. When I have had an infection flare up I have gone to our local health centre in Spain and simply produced my card, my appointment and tests were covered and I simply paid for the abs which were so much cheaper than the UK.
suzyj

Registered:
Posts: 51
Reply with quote  #49 
No those in white coats definitely don't know everything - the problem is they have to have evidence based on scientific studies. Maybe they will do one on D Mannose and then we can get it on the NHS. I have used Optibac before so will try that - I don't have any allergies so no problem with kefir which is expensive in health food stores but much cheaper in the Polish shops (they sell their own brands from Poland). Kombucha is also supposed to be good to restore acid/alkaline balance - you can make it yourself if you have a culture but it is easier to buy it. Anything is worth a try.

I think I will just have to pay more on insurance as I am not holidaying in Europe (camping safari in Africa - as I will be 65 this year I decided to do something really different) or if all else fails and the problem persists then I will cancel that and go to India for Ayurvedic treatment which can be very effective but you have to find the right person/centre which is not so easy.

I will see what happens at the urology department next week and if they think it is really necessary to do a cystoscopy then I will have to arrange for another time and have it done under general anaesthetic as I don't think I can have it done any other way.
Millie

Registered:
Posts: 793
Reply with quote  #50 
'Old' d-mannose used to work...when aniline was used in the extraction process. 'New' d-mannose makes no difference whatsoever to me personally. The main manufacturer/distributor (Danisco) assured me that this couldn't be the case but my UTI was so permanent that as soon as I switched from one to the other my symptoms returned. Am guessing the aniline was therefore what made the difference. In those days (> 10 years ago) Danisco had the sole patent (worldwide) for d-mannose so although it appeared as if different companies made it..in actual fact it all came from the same source. Not sure if that's changed now. Would love to find the old chemical d-mannose again but the aniline was removed from the process in order to pass UK/Europe health guidelines etc
Moderatorsusan

Moderator
Registered:
Posts: 892
Reply with quote  #51 
Millie, I personally take Now Foods D Mannose which I find to be extremely good.  Its shipped in from the US but also available from Amazon.  You could try that or Sweet Cures as well.
Millie

Registered:
Posts: 793
Reply with quote  #52 
D-mannose doesn't work for me. But thank you
Moderatorsusan

Moderator
Registered:
Posts: 892
Reply with quote  #53 
Millie

Sadly it only works on gram negative bacteria so if those aren't applicable in your case then thats probably why it won't work.  


Millie

Registered:
Posts: 793
Reply with quote  #54 
As I said, it used to work amazingly well until the extraction process changed. Literally that very day (when I switched from old to new d-mannose) it stopped working....so I stand by my theory that it was the aniline and not my particular bacteria.

Lindilou

Registered:
Posts: 122
Reply with quote  #55 
Waterfall D Mannose contains rice flour which is causing an itchy rash, am changing to another brand.
__________________
[smile]
Millie

Registered:
Posts: 793
Reply with quote  #56 
Lindilou...around 12 years ago it was all 'made' by the same company (Danisco) but sold worldwide under various brand names...they had the patent at the time i.e nobody else could make or sell it....could well still be same story
Lindilou

Registered:
Posts: 122
Reply with quote  #57 
Ahh I see, thanks Millie.  It's just since I've been taking it regularly I've this very fine rash on my arms from my elbows down which itches. I do have allergies to wheat, gluten and dairy etc so i was wondering about the rice flour. Maybe stop taking it for a while first and see what happens?
__________________
[smile]
Millie

Registered:
Posts: 793
Reply with quote  #58 
Lindilou...I am gluten intolerant and after many many years of battling cystitis I think there's a strong connection between the two things. If I plot my most recent remission and when I gave up gluten with when my problems returned and I was introducing gluten again the two run side by side. Trying to understand how or why that might be is tricky as I have normal cystitis (18 years) and not IC...I haven't been able to work out why maybe inflammation caused by gluten could promote a bacterial illness...yet that does seem to be the case for me
Moderatorsusan

Moderator
Registered:
Posts: 892
Reply with quote  #59 
Millie

I would start researching leaky gut in terms of your gluten link and bladder issues. Once leaky gut develops it puts huge pressure on the immune system allowing unhealthy bacteria to spread through the system worsening susceptibility to bladder infections.
Millie

Registered:
Posts: 793
Reply with quote  #60 
Thank you, yes was treated for leaky gut by Stefan Chmelik many years ago
Previous Topic | Next Topic
Print
Reply

Quick Navigation:

 Teva UK Ltd Abena.co.uk
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.