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Sarah1975

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Posts: 15
Reply with quote  #1 
I've just started treatment with Dr A after enterococcus and e coli were found when my urine was cultured via a broth test. A high level of calcium oxalate crystals were also found (I'm going to my GP about this next week as kidney stones could develop).

As a bit of a back story I'd never had any bladder problems at all until my first ever UTI in July 2016, although the dip test showed infection it was never sent for culture.  Two courses of antibiotics cleared the infection but I was left with a horrible pinching/stinging feeling in my urethra when about to initiate urination and I think what must be stinging muscle spasm when my bladder is full.  I then developed shooting urethral pain/spasm after urinating and a frequent urge 'to go' as soon as I'd just been.  I also occasionally feel like the skin over my pubic bone is burning.  No urgency, I can hold on for as long as I need to and my bladder isn't painful as such when full and can hold a good amount of urine. I don't need to get up in the night.  All trips to my GP resulted in negative urine cultures so I was referred to a urologist.

Dr A has put me on high dose Nitrofurantoin which I started today.  I was just looking for some moral support or wondered if anyone has had similar symptoms.  I understand there is a Facebook support group for people in treatment with the London Professor and Dr A but I'm not on Facebook.  I finally saw a urologist a couple of weeks ago (prior to my Dr A appointment) who was very dismissive and has written to my GP saying he thinks I have Thrush!  I'm feeling very low at the moment and have developed quite bad anxiety and lost a lot of weight, I work full time and I'm finding this a struggle presently.  I know that there are many many people on this forum who are suffering much more than I am but I seem to have got myself in a state that I'm struggling to get out of.

I've done a huge amount of research and currently take a number of supplements: Glucosamine and Chondroitin, MSM, oil of oregano, Quercetin and Bromelain and high strength garlic.  I've tried changing my diet but didn't notice any real difference in symptoms.  I also take 10mg of Amitriptyline daily after reading about it's possible benefits and discussing with my GP.
 
Hannah123

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Posts: 20
Reply with quote  #2 
Hi Sarah 1975,
I too have ecoli and enterococcus(!) in my latest private culture (nhs cultures come back normal). My symptoms sound almost exactly like yours, mainly urethral. This bout began like yours in february with a cultured uti but symptoms remained after nhs testing showed nothing, hence the private culture. I have had similar symptoms for many years but was probably misdiagnosed with IC.
I have recently seen Miss EN and am now under the Prof who has diagnosed a chronic biofilm. High dose nitrofurantoin is the first thing that really helped me, so please don't despair. I am on cefalexin high dose now and will keep being prescribed different antibiotics until one works! I'm sure your Dr A will do the same.
Waterfall d mannose has helped me in the past but it irritates my stomach now which is very rare, maybe see if your dr says you would be ok try it.
Most importantly it sounds like you have found what's wrong and it are pushing forward to get better. It's tough but hang in there. A microwave hot water bottle on the belly really is a godsend for me to distract my brain from the pain signals, try that too if you haven't already!
Take care, good luck. X
cat33

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Posts: 34
Reply with quote  #3 
Hi Sarah1975

I am also in treatment with Dr A. I get a stinging sensation at the bottom of my bladder, but like you, I can hold on for as long as I need to.
It sounds like you are doing everything right regarding taking supplements. They are very similar to what I'm currently taking as well. I saw Dr A in May 2016 and eight months later, I still have symptoms, but they are far more manageable. Like you I started on Nitrofurantoin, then switched to another antibiotic. Now, I'm only taking D Mannose at night and the anti histamines Cetrizine and Ranitidine. I've totally changed my diet and personally, I can really see the benefits, but it did take around three months.
This time last year, I was feeling very low and like you, I'd lost loads of weight. These forums were really helpful and they got me through the worst part. So come and vent on here, you'll always find a sympathetic ear!
As Hannah 123 says, a hot water bottle is always helpful, but I also found relief with a small TENS machine. I could wear it close to the public bone and get on with my day. For me Its great for pain relief and I found it really helpful.
Let us know how you get on!?
Sarah1975

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Posts: 15
Reply with quote  #4 
Hi Hannah123 and cat33

Thank you so much for replying to my message, what you've said has really helped me to feel less alone with all this.  I have understanding friends and family but I'm conscious to not talk about my bladder all the time even though its constantly on my mind.

I'm thinking perhaps I didn't really give the diet long enough so might try again to see if it helps with the feeling of needing the loo all the time.  I'm hoping the supplements will help too, I've not been taking them that long and I know these things can take a while to build up in your system.  Dr A had also mentioned D Mannose so I will look into adding that to my daily supplements.

Please do keep in touch, its good to be in contact with people on similar journey's albeit a bit further down the line.  I hope you both continue to improve and that in the not too distant future there will be a time for all of us where we don't even give our bladders a second thought! [smile]
cat33

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Posts: 34
Reply with quote  #5 
Not a problem Sarah1975. I found that Grapefruit Seed Extract was helpful for reducing frequency and I believe it is helpful if you have the enterococcus bug (can someone else verify this for me?). D Mannose is good for ecoli and if I take some last thing at night, the first pee in the morning doesn't sting half as much!

Don't lose heart,cos things will improve.Its heard to believe when all you can think about is the fact you need to pee. I no longer feel like this all the time, which is fab, nine months into treatment. Dr A is very understanding (as you know) and you can always drop her an email, if you feel that things are not progressing as you hoped and she can look into it.
Hannah123

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Posts: 20
Reply with quote  #6 
Thanks Sarah1975, I'm only a couple of months in treatment with the Prof, although not too much improvement yet as it's early days, I now feel that there is hope on the horizon.

As for moaning to family and friends, well I make sure I drone on about my bladder all the time [wink]...knowing their ears hurt too makes me feel a little better [smile] .

Good luck to you and cat33 too. X
lottieloo

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Posts: 11
Reply with quote  #7 
Hi Sarah 1975
I'm sorry you've been feeling wretched, I totally understand.  I've been suffering with cystitis/UTI's/flares for over 20 years but I think it's because things weren't treated properly in my teens.  However,  things have improved since seeing Dr A.  I started seeing her a few years ago & I was prescribed 6 months of Co-Amoxyclav for entro & staph bugs.  Things greatly improved but I have to watch my diet; No alcohol, fizzy drinks, caffeine & not too many fruit juices etc.  However, coliform sometimes rears its head (this could be my hormones) & Dr A prescribes me 2 weeks of Trimethoprim if naturopathic treatments aren't working.  I take everyday garlic, acidophilus, L-arginine, 1 x D Mannose (as a maintenance dose), for my bladder & at the first sign of bladder awareness or nervousness I take Loratadine which really helps.  If it develops into a flare I increase D Mannose up to 6 per day & take grapefruit seed extract & oregano oil & allow at least 5 days. It's 50/50 with me if they work but if not there's antibiotics to fall back on.
I've also suffered with anxiety & discovered meditation at the beginning of last year, which I now love! 
Hang in there, there's lots of us & although all our symptoms may be slightly different you're never alone with this.  Bladder Health UK have been the best charity I've ever been a member of & understanding what's going on & having support from Dr A & fellow sufferers really helped me manage my flares.
Just wanted to share, all the best [smile]
Sarah1975

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Posts: 15
Reply with quote  #8 
Hi Lottieloo
It's really good to hear that you've seen improvement whilst under the care of Dr A.  I'm not having a great day mentally today despite having a better 'bladder' day so far.  Anxiety is a real problem for me generally but has been dreadful these last few months.  It was interesting to read that you've found meditation helpful as I've thought about looking into this myself as well as perhaps trying yoga.  I do feel that if I could get a better hold on my mental state then it would also help my bladder but I seem to be stuck in a vicious cycle.  Sometimes I do feel strong and have the 'right, this won't beat me, I will get better' attitude and then I have a particularly bad day of feeling the need to pee constantly and I end up feeling defeated again.  I think once I start having more better days then I will naturally start feeling more positive. Its strange to think that 6 months ago I'd never given my bladder a second thought and now it's all i ever think about!
Best wishes
Sarah1975
Bholly

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Posts: 12
Reply with quote  #9 
Hello all,
Can you please tell me how the Prof and Dr A diagnosed the chronic ibiofilm infections? Did you have cystoscopies or was it just from the urine samples and symptoms? I am being seen by a London urogynaecologist after 18 months of symptoms. He diagnosed me last summer with Mast Cell Activation Disorder (from symptoms, blood and urine ) and put me in on antihistamines but symptoms persist. He now says I should have a cystoscopy to look for biofilm infection. Is this right? Can he see a biofilm infection this way? He says if he finds one then he would rotate different antbx for 3 months. I am very fearful of the cystoscopy making symptoms worse and of antbx giving me terrible thrush. I was put on 3 months of nitrofurantoin a year ago but it didn't help and did give me terrible thrush which took months to clear.
I've really not sure what to do now?
Thanks for your help.
Moderatorsusan

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Posts: 880
Reply with quote  #10 

All 3 specialists including the one you see believe in biofilm infection and treat patients accordingly.  I'm afraid at the moment the only method of treatment with all 3 is high dose antibiotics as it is low dose short term antibiotics that has led to the development of the biofilm as the infection has been incorrectly diagnosed and treated over a period of time leading to this embedded biofilm infection.

If you are under treatment with Dr A she will take a full history of your bladder issues and ask you describe all the symptoms you are experiencing along with any previous antibiotics you have taken and any medical reactions. She will carry out a detailed broth culture based on that initially developed by Dr Paul Fugazzotto (information here on the process here) https://icinfocenter.wordpress.com/dr-paul-fugazzotto-microbiologist-broth-culture-procedure/

This test will diagnose around 70% of active bacteria in the bladder but is very much dependent on your symptoms.  The nature of a biofilm is such that bacteria flux in and out of it and therefore she advises it is always best to test when you are significantly flaring as the biofilm has released bacteria into the bladder causing these symptoms of a flare.  If the bladder is calm with minimal symptoms then fewer bacteria will be identified. Once the bacteria are identified with the relevant Ab susceptibilities and resistances then treatment on high dose antibiotics will commence.  She will also advise on natural alternatives if you feel that ab treatment is simply not for you.  This will include Oil of oregano, D Mannose, Urva Ursi and Grapefruit seed Extract.  At present she is unable to prescribe long term high dose antibiotics and if you do not respond to initial treatment you may either have to retest or she will look at your results and prescribe another course of short term high dose antibiotics.  Be prepared to have to retest for a broth culture if things don't improve.  Her background as a microbiologist has led patients to call her "the bug whisperer" as she understand their symptoms and the behaviour of bacteria so well.  She can also carry out blood tests and swab for vaginal health issues as part of the treatment (although as a private consultant this will have to be paid for).  

With the Prof, he prefers to look at your urine under a microscope analysing the number of white blood cells (indicating infection and inflammation) and epithelial cells (indicating the body's response to the infection).  At no time will he carry out a test to determine the bacteria in the bladder feeling that the patients symptoms are more crucial to treatment than test results. He used to test but felt that the testing led him to chase the incorrect bacteria. However if you have had positive samples in the past he will listen to what you have had diagnosed and more importantly how you have been treated.  After that you will be put on the appropriate high dose antibiotics depending on your symptoms and urine microscopy and seen again in around 28 days for follow up.  You may not respond to the first set of antibiotics prescribed and with both specialists it is critical to keep them updated as to how you progress and more importantly if you have any allergic reactions to medications.  Many patients need a change in meds as these infections are polymicrobial (in other words they are caused by many bacteria rather than a single causal agent) and in knocking back one bacteria it may allow a resistant one to take its place on the current ab.  Its all a question of bacterial balance.  He will NOT carry out a cystoscopy believing them to cause more problems and introduce more bacteria into the bladder.  Additionally he is unable to swab for vaginal infections or carry out blood tests.  For these you will need your GP.  He can however prescribe for any candida infections and is able to see candida in the urine as part of his analysis. 

With Mr K, you have outlined his treatment so you are aware of this as you are in his care.

So as you can see I'm afraid treatment at the moment is reliant on high dose antibiotics because that is all that is currently available.  New treatments are being developed which will involve the introduction of biofilm busters into the bladder to breakdown the infection in the bladder wall and remove the infection along with dealing with any inflammatory and pain issues.  However these are several years away and still in development yet alone trials as yet. 

Its really your call as to how you treat.  There are patients who are seeing significant improvement on treatment with these specialists and are leading normal lives but it really depends on symptoms, how long you have had infections and any other co morbidities such as autoimmune diseases or infections/conditions.  You can significantly help things by following anti inflammatory, anti candida and an IC diet especially if inflammation is an issue.  Sugar and Carbohydrates feed bacteria so if flares are especially bad after say Christmas or Easter it is exacerbated by the treats we consume.  Additionally stress is a big all you can eat buffet for bacteria as it produces a mast cell response which is food for bacteria and can coax bacteria out of the biofilm to have a good meal sparking off horrible symptoms.  The earlier you can get into treatment with these specialists the quicker resolution can hopefully occur.  Both specialists will advise that they can get you symptom free but I'm afraid by the very nature of a biofilm infection, if it has developed then the new treatments being developed will hopefully remove this from the bladder wall once and for all.  Of course, one always has to remember that there are no guarantees in life and there are no promises that you won't develop another UTI again. However if this does occur you will at least have a treatment source to analyse and treat appropriately.

The BladderHealth UK office have papers written by Dr A and Prof about their treatment methods and their clinics and would be happy to talk to you about these if you want to give them a call Monday to Friday between 9.30am and 2pm on their advice line.

 

otty

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Posts: 44
Reply with quote  #11 
Hi Happy New Year to all survivors of bladder problems.
I have been trying to manage IC since 2004. I lost my job because of the horrendous pain. lack of sleep and exhaustion.
You name it and I have tried it, from surgical investigations to numerous types of medication, along with complimentary therapies.
I find that acupuncture offers me instant relief from the pain but does not last very long.
I was referred to London to see a specialist and was prescribed Co-amoxiclav 500mg/125 three times a day and Doxycycline 100mg for 2 weeks then Co-amoxiclave  500mg/125 at night for 6 weeks.
I am about half way through this course and after three weeks I started to feel much better and for about a week I had no pain. I could not believe it after all these years no pain. However this did not last and I have started to get the awful pain back again. I was wondering if anyone else has taken this medication and what was the outcome.
I was also thinking about trying to get the broth test but my GP says that she can't arrange this as it would have to be a private matter? Can you inform me how I go about this and how much will it cost me?
Wishing you all the very best 
 
ModeratorKate

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Posts: 1,590
Reply with quote  #12 
Hello ottty

If you contact the Office today they will be able to assist you.

See this link also for info

Regards
Kate

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http://bladderhealthuk.org/membership/membership-benefits
LittleNell

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Posts: 1
Reply with quote  #13 
I am new to the forum, I have an appointment with the professor in March but am extremely nervous about using long term high dose antibiotics with regards to effect on my immune system and potential development of resistance. I am concerned that the antibiotics may weaken my immune system and leave me dependant on them. My symptoms are however definitely antibiotic responsive. I believe I have a biofilm infection or deep infection as a result of a bladder injury/ obstruction 18 months ago.

Is there a clinic in Staffordshire/Newcastle that does broth culture and high dose antibiotic treatment? Please can someone PM the details.

Has anyone had success with long term antibiotics?

I agree stress is awful, I am sure stress weakens the immune system and worsens symptoms.

Regards

LittleNell

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LN
ModeratorKate

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Posts: 1,590
Reply with quote  #14 
Hello LittleNell
Welcome to our Forum, am sure you will find much to assist you on your journey.

Please see Moderator Susans reply No 10 above about treatments, and then see my link No 12 above re Broth culture.

Then may I also suggest you consider joining BHUK and contact them as they have more detailed information and support ,they can send you, they will also send you an informative joining pack and a quarterly magazine full of even more interesting information, that helps us all understand this dreadful dis-ease, that is so complicated, in that we are all different and what works for one person may cause complete mayhem for another.

Hope this is a help, kind regards
Kate

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Sarah1975

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Posts: 15
Reply with quote  #15 
Hi everyone
I had an email today from Dr A saying that she would only be running a skeleton clinic for her current patients from tomorrow and she no longer had any administrative support.  I'm worried as I run out of antibiotics tomorrow and a new prescription hasn't arrived yet despite emailing over the last few days.  Is anyone else in a similar situation? I'm not sure what to do.  The Dr will only be picking up phone messages a couple of times per week.
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