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VitaA

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Reply with quote  #1 
I'm glad I found this forum.
Long story short:
Got my first ever UTI in March, prescribed 50mg Nitrofurantoin for 7 days. The infection came back 3 days later. Got 100mg Trimethoprim for 7 days. The infection came back 3 days later.
Took matters into my own hands and spent the whole April going through a number of natural remedies and treatments, spent tons of money on supplements and got nowhere.
Got back to GP, did a culture test, e-coli. Prescribed 100mg Nitrofurantoin for 7 days. The infection came back 3 days later. Now on 200mg trimethoprim and NOT feeling any hope this will work...

I don't want to become a statistic, someone who is battling a UTI for 20 years, I feel it's still early enough to do something about it. But what else can I do? The GP seems intent on giving the weakest antibiotics on lowest doses. Would the bacteria be resistant now, since it already survived the antibiotic treatment with both medicines before? Would this amount of time be enough for a biofilm to develop?

My mental state is greatly affected by all this too, I can sympathise with so many of you here who had these problems for years. IS there any hope?
Moderatorsusan

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Reply with quote  #2 
Dear Vita

You are doing everything correctly, it's the dosage because of antibiotic prescribing restrictions that is not helping.  If you call the BHUK office today before they can give you details of specialists who are treating patients with recurrent and chronic issues of UTI.  GPs are hamstrung because they only have guidelines for acute infections i.e. those that resolve within a few days either with self help remedies or via antibiotic therapy.  There is nothing for recurrent and chronic issues. The GP may feel you need to be referred to a secondary consultant if things don't resolve and this is sensible in case of anatomical issues, family history of bladder or renal problems but focus must be on resolving this infection first.

You could continue to supplement with D Mannose as its an ecoli infection.  Every 2 hours for 72 hours for acute symptoms and a maintenance dosage of between 4-6 teaspoonfuls a day.

You can obviously help things in terms of supporting your immune system.  Healthy diet, low sugar or no sugar, reduced carbs (all feed bacterial growth).  High dose probiotics to protect gut flora as you are on antibiotics.  A healthy gut helps the immune system. Reduce stress levels, bacteria love stress as it encourages them to multiply (yes I know easier said than done when fighting a chronic infection).  The Angela Kilmartin book about Cystitis is an excellent self help guide too.

You may also need to play detective as to why you got your first ever UTI? Was there an explanation as to why the UTI occurred - are you peri menopausal, menopausal or post menopausal as UTI incidence can increase due to this.  Have you recently changed your method of birth control as hormone imbalances can cause issues with UTI due to changes in vaginal flora and natural antimicrobial properties of oestrogen being reduced.  Any of this may need to be addressed to help prevent any further UTI incidences. Had you had to go into hospital for surgery, been travelling and picked up a tummy bug?

You do have help options out there so give BHUK a call today.




ModeratorKate

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Reply with quote  #3 
Hello VitaA

 Susan , as always given you some good advice, mentions do please contact BHUK  you will have so much more advice and information to assist you, more than we can cover here on the Forum.

As  I understand if E. Coli is found then TRIMOPETHRINE, will have no benefit. It maybe worth speaking with your Doctor and ask to see the Lab results, as this should tell him what AB's are resistant.

Do please also read through the Forum as There is so much in depth info from others suffering like yourself, have a read through this link as you may see something you can relate to.
http://cobf.websitetoolbox.com/post/help-needed-for-recurring-infections-9290541?pid=1300017790&highlight=e-coli

Hope we have been some help and do please keep posting, we will always listen, as we can relate to all the problems with this nasty dis-ease.

Kind regrards
Kate

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VitaA

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Posts: 5
Reply with quote  #4 
Thank you ladies for your reply.

Moderatorsusan, thanks for all the tips.
Will give a call to BHUK soon. I also have a GP appointment on 31st and need go in armed to the teeth with information (I plan on bringing the Chronic UTI Campaign information sheet for GP's also). I've taken so much D-Mannose during this ordeal, it's not even funny. I even did a 2 day 5000mg every 2 hours protocol (even at night), tapering to 3000mg afterwards. I still take 3000mg 4 times a day.

The only clue I have why I got UTI in the first place is stress. Up till then was healthy as a horse, been eating within guidelines of low-carb diet, avoiding sugar, haven't been to the doctor in decades. Not menopausal, never been on birth control. It's just when my husband's health broke down and we lost our only source of income (with mortgage and 2 kids) and I had to rush him to a hospital for a brain scan, 2 days later - BAM my first UTI! I am trying to manage my stress levels, but it's a challenge with everything that is going on with his health, our finances, my health and everything else....

I am working to improve my stomach acid and did intestinal cleanse to improve absorption of the medicines, also taking supplements that are claimed to brak down biofilms.

ModeratorKate, thank you for your comment. The culture test checked for sensitivity and trimethoprim (as well as a list of other antibiotics) came back as positive for killing e-coli, so looks like GP is just going to go through the list of abx 7 days at a time...

Thanks for the link to other posts, will be useful to read them through, I feel like I've been doing so much research already, I know more about UTI than most GP's...

Thank you for your support, ladies. It means a lot! Will keep you posted and will call BHUK for more information.
Moderatorsusan

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Reply with quote  #5 
Vita

If it is an help I'm aware of many whose UTI health was severely impacted by a stressful incident whether that be physical or emotional.  Sadly our 24/7 lives in the 21st century mean our immune systems are compromised and stress doesn't differentiate in the body's response between physical or emotional in how it affects you.  One acupuncturist I know who is treating many bladder patients did review of her 300 or so patients and found 3/4 of their bladder problems followed a stressful event in their lives.

Do call BHUK tomorrow, you will find a very friendly voice at the other end of the line. 


VitaA

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Reply with quote  #6 
Wow Susan! I didn't realise the stress issue is THAT serious. Will have to do more to mitigate it, as it seems a vicious cycle between UTI and stress. Do you know what are the hours of the BHUK helpline?
Thanks!
ModeratorKate

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Reply with quote  #7 
Office is only small try between 10.00 and 2;30 BUT can always leave your number if the Answer phone is on and the WILL ring you back...

I can empathise with you as I am on my FIFTH A.B in 7 weeks and now prescribed again Co Amoxiclav 500mg three times a day( My lab result said correct dose and Trimopethrine would not work.) and Co amox did clear it, but like you returned with a vengeance. Grr!!!
Mine cleared and like you comes back again, so am being sent for scans and the dreaded Cystoscopy. Grr!!!!!

As we have said do contact the Office and if you become a Member you will soon realise the benefit.

Hope you feel easier soon. Am still taking D Mannose and especially last thing at night, to leave it in bladder as long as possible, also increased Probiotics to ease Thrush symptoms, that will surely arrive after so much A.B's

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doloroso

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Reply with quote  #8 
Hi Vita.
Oh dear dear me. I feel for you dear Vita. Mine has been a very very long journey with recurrent UTI's. 5 years nearly it all started. An extremely long haul believe me. I too get E.coli. I had to scream down the phone at my then GP telling him that I NEEDED to see a specialist. You see, I soon have haematuria (blood in the urine) appearing. High fever. Searing pain. etc etc. I was referred and fortunately my Urologist was my late Father's Urologist no less!. I had a cystoscopy which showed an extremely angry, highly inflamed bladder. As I preferred not to be sedated I saw my poor angry bladder on the monitor!! Bright red!! So inflamed! In fact my Urologist asked if I had ever smoked!!!! My response was "NEVER"!!! I had a biopsy and all was well. Nothing untoward. Until October 2017 I was on long term Amoxicillin. Those antibiotics you mentioned did nothing to me and I worsened. I changed my diet. You may find this link helpful.  https://www.ichelp.org/living-with-ic/interstitial-cystitis-and-diet/. I eliminated acidic foods, even my favourite fruits. Just stuck with bananas, black grapes and found the apple which suited my bladder. I avoided alcohol, caffeine, sugar. When I had a flare, I would drink cammomile tea which would soothe my burning bladder. Vanilla ice cream too. It was trial and error to be honest until my bladder started to heal. I learned to sit right back on the loo and to pee as much pee as possible as many times we do not empty our bladders correctly, leaving the residual urine to cause our bacterial infections. I have a portable bidet which I use to wash my lady bits. I still take probiotics. STRESS!!! STRESS!!!! YES!!! My Urologist did say that STRESS could trigger a urine infection. It is said that ladies with UTI's are generally "p..... off"!! In my case this was true. I have another follow up appt in July. I AM in a good place thank G.d but it has been a long, long journey!!!
The Moderators here know their stuff. You have come to the right place. DO NOT GIVE UP!!! Things will improve believe me. (I may be one of the lucky ladies. However, it has taken a while).

Keep posting.

I wish you more serenity and peace.
Hugs
xx
VitaA

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Posts: 5
Reply with quote  #9 

Dear doloroso, thank you for your kind comment and sharing your story! What a nightmare this is! Until I got mine, I considered UTI a very simple illness - you take a course of antibiotics and you're fine. It's been eye-opening going through this (and also seeing the medical system completely clueless about it). My infection is NOWHERE near as bad as yours. Most days I only have some pain/discomfort after urination and slightly increased urgency. My last 7 day course of Nitrofurantoin actually cleared it enough that my symptoms were completely gone for 2 days! It was heaven! Not so much because of physical discomfort, but the phychological relief! Then it came back after 2 days..... I am now going to try persuade a GP to put me on a long course high dose Nitrofurantoin, because I know it works, it just doesn't have enough time to "finish the job" in 7 days. I'm hoping not to be put on broad-spectrum antibiotic, because of risks with resistance and killing good intestinal flora after which there could be another long list of problems to deal with. FIngers crossed they're willing to listen to me and help me. Oh, and going on holiday in 2 weeks..... Instead of excitement, I feel the mind numbing fear that the symptoms will come back and I'll have no access to medical care... I have to beat this and I only have 2 weeks!!!
I'm glad you're feeling better, even if it took a long time and a lot of changes. There is always hope. My MIL suffered with constant UTI's for years, until her GP prescribed some old fashioned antibiotic (penicillin I think) and it knocked the bugs right out! She's been fine since. Go figure. Never know what might happen.....

doloroso

Verified BHUK Member
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Posts: 89
Reply with quote  #10 
Make sure you drink plenty of water. Cranberry juice absolutely not!!! Amoxicillin is part of the penicillin "family"! I still take probiotics although I know longer am on the abs. 

Keep your chin up and keep posting.
x
VitaA

Registered:
Posts: 5
Reply with quote  #11 
Thanks doloroso! I learnt about the cranberry juice the hard way! LOL! [rofl] Taking D-mannose these days instead. There's some confusion about the amount of water one needs to drink, I have read a quote from Prof. Lee-Malone that if you overdo it, it dilutes the medicine in the urine and makes it less effective. Not drinking enough and not peeing enough is also a mistake, so I try to keep the middle ground of being adquately hydrated, but not driking like a camel. There's also some confusion about PH of the urine, the bacteria struggle to reproduce in alkaline urine, but Nitrofurantoin is most effective in acidic environment. So not even sure what to think about that....

Just got prescribed 14 days of Nitrofurantoin instead of 7, so there's progress. Will see what happens... Continuing with celery juice, biofilm disruptors and D-Mannose [cool]
doloroso

Verified BHUK Member
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Posts: 89
Reply with quote  #12 
I aim to drink approx one and a half litres of plain water daily. I love cold milk so instead of water I have milk in between. My darling late Mum would give my darling late Dad too much water resulting in low sodium levels showing in his blood tests. He’d had a prostate problem for years.

I do hope that by increasing the dose of abs you will find some improvement.
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