photo ABENA ADVERT-banner_zps5mzyerjh.jpg  photo Dmannose_zpsvcaxj4ag.jpg

Register Latest Topics
 
 
 


Reply
  Author   Comment   Page 2 of 2      Prev   1   2
LeanneRS

Registered:
Posts: 54
Reply with quote  #16 
Hi
 
The best GSE is the pure stuff without the synthetic additives (Nutribiotic liquid).

With probiotics I now honestly think you have to experiment to see what suits you best. I tried a 20 billion one and it was just too strong for me, but I have now had candida ruled out and my gut function was/is perfectly fine so it really just aggravated it. I am ok with 4 billion ones that you don't have to keep in the fridge.

Good luck with the herbs girls 
X
JessicaD

Registered:
Posts: 36
Reply with quote  #17 
Speedy12, I've sent you an email.

Leanne, thanks for the info.  Great news that you've had candida ruled out!  I'm going to ask my GP if I can be tested for gut candida...

x
speedy12

Registered:
Posts: 161
Reply with quote  #18 
Hi again,

I have replied and the list is on its way[smile]
JessicaD

Registered:
Posts: 36
Reply with quote  #19 
Thank you!!
LeanneRS

Registered:
Posts: 54
Reply with quote  #20 
Just for the record for anyone interested or concerned about the candida issue. I am now under the care of shall we say one of the leading specialists in the area of I.C in the UK and I was told that if you have candida in the bladder you can see the actual candida cells under the microscope and also there will be puss in the urine, so if you have no puss you do not have candida in the bladder! Obviously systemic candida and/or leaky gut is a separate issue and requires specialist stool testing, but I.C with candida as a cause will have the tell tale signs above. FACT!
X
Sophia

Registered:
Posts: 516
Reply with quote  #21 
That's really interesting Leanne and good news that you don't have candida.

I am still not sure whether I do or not but I guess the next step is getting tested as I've gone from 80% back to normal at the beginning of this week to having the most horrendous pressure back again from nowhere so am mentally on the floor at the moment wondering what the hell to do and wondering if its even worth continuing with a yeast and sugar free diet as I probably haven't got candida anyway!
Icy

Registered:
Posts: 428
Reply with quote  #22 
Hi,

That is strange about pus in the urine proving candida. A microbiologist and Head of a London hospital lab said that trying to detect candida is impossible in urine samples - even the most rigorous of testing and it evades everything which is why so few people get a positive result.  Candida adheres to the bladder lining and gut and because the human body has candida naturally, excessive amounts cannot show in urine. It would be good if one could detect it on simple tests but alas it does not seem so. Well that is what I was told anyway and another doctor I saw (environmental - also past microbiologist) confirmed the same and told me never to bother trying to look for it in urine tests.
LeanneRS

Registered:
Posts: 54
Reply with quote  #23 
Hi Icy

You are absolutely correct that candida will never show up on standard culturing or dip testing. There is no test for it on the NHS. I was not told this by a 'normal' doctor that does 'normal' testing. The only thing I have to back the pus thing up is that my GP also told me you will see it around the opening to the urethra.

After months of confusion and research I have come to the conclusion that there are many causes of I.C and I think that candida in the bladder is probably quite rare but highly possible. Systemic candida on the other hand in my opinion is most certainly not rare and is very underestimated and dismissed by most doctors.

Sophia the sugar thing is very interesting indeed, initially I got a massive improvement by removing it all together but these days I am far less affected by it. I have no explanation for this. It will without question feed candida but I asked the specialist if it will feed bacteria and the response was 'only if you are diabetic'.

The most sensible thing I have read is that it will aggravate inflammation anywhere in the body and it's basically just not good for us at all in general.
X
LeanneRS

Registered:
Posts: 54
Reply with quote  #24 
I'd just like to add that I am absolutely convinced that many cases of IBS in particular and also illnesses such as Fibromyalgia and chronic fatigue are caused by candida, just an opinion and possibly a controversial one at that!
X

JessicaD

Registered:
Posts: 36
Reply with quote  #25 
Leanne, very interesting info about candida!  I would love to know the name of the leading I.C. specialist that you're seeing - they sound really knowledgeable!  It would be so good to see a doctor who really knows about this illness.
helennewcastle

Registered:
Posts: 10
Reply with quote  #26 
Hello new to the group and I'm not quite sure how this all works . I would like to go and see the leading specialist in Ic my email is haprestegard@gmail.com thanks Helen
__________________
helen
Icy

Registered:
Posts: 428
Reply with quote  #27 
Hi Helen

It has to be said, sadly, that there are no leading specialists in IC in the UK. Urology departments are pretty useless as they only look at the condition in isolation and do not look at it as an auto-immune condition where the body is attacking it's own tissue and causing inflammation and consequently you have mast cells, immune responses all firing off like a war in the body.  Urologists do not look at the "whole" body and consider this as a system condition coming from a number of origins.

Equally there are no other "real"specialists. There are doctors who dabble in doing different testing and seem to have a genuine interest in trying to get to the root cause, but they are only really researchers - they do not have totally tried and tested systems whereby they are getting people totally well and out of the doctor's office!

IC is far too complex a condition for it to have been sorted by one "leading specialist".  There are only people who express an interest in it.

So one has to look at one's own symptoms (i.e. is the bowel involved, is there IBS symptoms, is there a history of antibiotic overuse, are there allergies, are there other auto-immune conditions i.e. Sjogrens, Rheumatoid Arthritis, Hashimotos, Lupus etc).  If so then finding an immunologist is a good bet and hoping someone will pick up on the bladder involvement.

Unfortunately there is little commitment to really nailing these conditions as most doctors and consultants in urology want the simple way of dishing out the antibiotics and showing you the door and telling you to get on with life. It's easier and gets more patients through the door and consequently more money!

A lot of research has to be done by the patient and then targeting doctors with that information to try and get to immunologists to do more testing i.e. auto-immune markers and markers for possible gut infections - just getting as many tests as possible in an attempt to unravel the root causes. 

I think some will try to make a lot of money out of this condition and still lead one round in circles of "try this and try that".  You have to be very careful.

In the past I went to "leading European specialists" in pain control and who were supposed to know so much about IC - gynaes who were also supposed to be leaders in IC and the top people to see. They actually knew so little about IC it was shocking.   I also went to urologists who were supposed to be the top IC specialists in the country.... also useless and knew so little - they never even considered IC was an auto-immune condition.  Fortunately I found a lot of stuff in American books and literature that discussed IC as auto-immune and I then tried to unravel all the business of overuse of antibiotics and the gut being damaged etc.  Only then did I start to put together that huge jigsaw puzzle which I still have so many pieces missing.  But I do not think there are any experts in IC.

IC is generally not of interest to most doctors - it is far too complex and takes too much homework - there are more "high profile" conditions like cancer which doctors find they gain respect among the medical world if they research into.  More prestige.   IC is not one of those conditions so we have to do a lot of research ourselves and try and just get the best testing we can.


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.