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lynnhopes

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Reply with quote  #1 
Hi  all,

I was on ABX with one of the biofilm docs from Jan 2014- Feb 2016 until I had a bad reaction to Cipro. I was then told that there were no other antibiotic we could use. So I ended up seeking natural methods through a naturopath. I also got my mercury fillings removed, which seemed to totally cure me, aside from the odd acute UTI when under stress.

Sadly, I have been under a lot of stress under the past six months (working, learning to drive, infertility treatment, a miscarriage, submitting my research for peer review, selling my mam's house) and felt tired all the time. I should have listened, but no. So in early March I developed an acute UTI. I actually had very little symptoms aside from one night of nocturia. So I went to GP and it turned out I had BV and a UTI. My culture actually got lost though so no idea what bacteria it was. Dipstick was positive. I took Ceftal twice a day for seven days and felt great.

Then two days after stopping I developed pain, shaking, and nausea. Ended up at the emergency doc with sky high BP and my urine was still dipstick positive. So he put me on Trimetoprin and Fosfomydyn, but these actually made me worse! I went from having pressure, frequency, and some pain to the most hideous urgency. 

So I called my GP and she said that Trimetoprin and Fosfomydn were both kinda weak and that there is lot of resistance to them in the area. So she put me back on Ceftal but at twice the dose and for ten days. I am also on sacro B and Optibac for women (wondering if they could be making me worse?) TG the urgency from Trimetoprin and Fosfomydn is gone, but I still have pressure, frequency, burning pain, a slight feeling of itch inside my urethra, and feeling hot and cold. I am not right at all, am losing weight, struggling to work, have no appetite, and very depressed and anxious.

Does anyone have any thoughts/advice?

Thanks.
ModeratorKate

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Reply with quote  #2 
Hello Lynnhopes

Bless you, am so sorry to read your post, what a stressful time you have and continue to be going through.

Agree Trimopethrine appears to be non effective, in all but a few weak infections.

Hope someone with more knowledge will answer soon. in the meantime,
can you contact BHUK,  and or could you re contact the Bio film doc you were under, am sure they would offer you suggestions.

STRESS is a big factor in upsetting our Bladders, which is not surprising as it has the most nerve endings, and therefore easily disturbed.
Relaxation, though difficult at these times will really assist, and following the plain alkaline diets along with intake of Water or Lemon Water.

Please keep posting, as you know we understand and will always listen

Kind regards
Kate






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Moderatorsusan

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Reply with quote  #3 
Dear Lynn

Iโ€™m so very sorry to read all this has flared up again and more than anything you have sadly suffered a miscarriage. Over the last few years you have been through so much and I know how much losing your mum affected you. However if you read your words, you will see that you have beaten this previously and will do so again.

The problem with an embedded infection is exactly that, it is embedded into the walls of the bladder. Even when getting on top of it after a period of time, it can sometimes lie dormant as the immune system takes over and rids the urine of the infection which is in the upper layers. These dormant cells are known as persister cells but the good news is it sounds like they have now come to the fore of your bladder wall and are shedding into the urine hence the horrendous flare up of symptoms.

Stress is an utter horror for wreaking havoc on the immune system - so many with bladder issues find that they start after a period of awful emotional or physical stress they have gone through. Our bodies simply cannot differentiate between the two and treat them equally. We women are also very prone to our immune systems changing particularly in our pre menopause years (35 years upwards) when our hormones start to significantly change.

What to do - well immediately contact the specialist you worked with previously and get a sample sent off and get into treatment. She has a lot of experience with hormone issues as well so can guide especially post miscarriage. I spoke with her last week and the majority her patients are those with hormone and/or bladder issues. DONT rely on the walk in centres in your country for treatment - you know the drill on this so need to hit it hard. At least your GP sounds like they have woken up to the realities of current treatment guidelines.

Work on your immune system, I know you have worked previously with specialists in the US to do this so go back to the protocol and use it. If needs be book another appointment and get a skype consult. Given what you have been through some tweaks may be necessary.

At the very least, try try to slow down. Nothing needs to be done tomorrow. Work out what needs to be done and do it step by step. Pass the un urgent stuff off to friends and family - be upfront and tell them you are struggling healthwise and you simply cannot do all of this on your own. If they donโ€™t know about the miscarriage tell them - most would be horrified if they realised what has happened due to you managing everything on your own.

Your vaginal PH levels are obviously completely off because the BV is back - trying adding in some vaginal probiotics if you have them. The fertility treatment and miscarriage very sadly will have upset these levels. We know there is a strong link between the vaginal and bladder flora and that bacterial and fungal transfer can happen causing a flare up in UTIs.

As Kate has said, keep posting. Go see a counsellor as well. With the loss you have suffered you need to talk this through. The soul as well as the body needs to re heal.

lynnhopes

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Posts: 10
Reply with quote  #4 
ModeratorKate - Thanks for your lovely reply. Even the pharmacist said to me today that Trimetoprin is useless in our area. ๐Ÿ˜‰

I will phone BHUK tomorrow. I emailed my old doctor, and PA said she would get back to me with options.

What is lemon water? The alkaline diet seems to be a fast track to extreme weight loss for me, but am doing my best as I want to help my bladder, but don't want to lose weight.

ModeratorSusan - So lovely to read your words. Thanks! I am off Facebook for Lent (massive mistake and I won't be doing that again!), so can't access the group. However, I emailed both doctors. Waiting to hear back from my original specialist and the London doctor has offered appointment times too. Meanwhile, my doctor actually has me on the Ceftal 500 mg x 2 for a full 30 days. That being said, she also asked me to drop in a urine sample, which I don't get as surely it won't show anything given I am on ABX. A bit confused...

I am cutting things out of my life now. Will quit my volunteer work and am going to get my gel nails removed. Sounds silly, but they require two appointments a month and it's yet more stress I don't need.

I contacted my old counsellor, but have not heard back. 

Saw my gynaecologist today and she was extremely nice. We spent most of the time talking about my UTI and extreme anxiety and stress levels. She was very calming. 

I have just washed my hair and for the past week I seem to get frequency after I shower. Not so much when I just do a short daily 5 minute shower. But when I wash my hair it takes 15 mins and I seem to flare up from it. I read on the FB years ago about spraying cold water for a minute in the genital/urethral area at the end of the shower, but it does not seem to be helping with frequency.

In general I am just still so anxious. My symptoms appear to be improving, but even writing that out makes me nervous.
ModeratorKate

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Reply with quote  #5 
Hello lynnhopes

Well you are certainly TRYING so hard to find correct solutions, BUT also do not try too hard, as that will only stress you more.

Lemon water is just slice of fresh lemon in cup or jug,  although acidic,when in the body, turns alkaline, so helps the bladder alkaline.

I am sure you miss FB but.  feel you miss the INSTANT contact, and as you are finding,the slower old ways, (Personally I have never and will not use any social media)
but then I get told ah! but thats your age CHOL๐Ÿ˜‰๐Ÿ˜‰

Keep posting..




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lynnhopes

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Posts: 10
Reply with quote  #6 
Hi Kate,

It's not so much the instant contact (although that is nice.) More the fact that I had gotten to know a lot of ladies on the FB group.

Despite being on various probiotics it looks like I have gotten thrush too. Have a GP appointment tomorrow. Sigh...

I have been using the net since I was a teenager as I am an exennial. It turns out that quitting FB really is a sacrifice for me.
ModeratorKate

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Reply with quote  #7 
Hi Lynn

Here is some info on THRUSH
http://www.chronicutiinfo.com/factsheets/thrush-how-to-be-diagnosed-and-treatment/

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lynnhopes

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Posts: 10
Reply with quote  #8 
Can thrush in the vagina irritate the bladder, causing pressure and frequency? It's a great document, but it didn't mention that aspect.

Thanks.
Moderatorsusan

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Reply with quote  #9 
Yes it can fungal spores can latch onto the bladder wall. Cystitis due to Candida may result in frequency, urgency, dysuria, and suprapubic pain. Blood in the urine is also possible.
lynnhopes

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Posts: 10
Reply with quote  #10 
Really don't know what is happening. I spoke to my specialist on Friday and also my GP had put me on Ceftal 500mg x 2 on Friday the 22nd of March for a month. After a few days this took away the pain, tingling, and pressure. However, I still have frequency, the constant urge, cloudy urine, feel cold a lot, and have a low appetite. Doctor put me on Icatranazole for a week on Friday night and my vagina is definitely better. However, the last two nights I had pain and today has been filled with the urge and itchiness inside my urethra.

Specialist suggested I take icatranazole for one week and then add Hiprex if no joy. If still no joy, I should then add Neuforantin. However, my bugs were never cultured so I really feel we need to know what we are dealing with. Right now (thanks to the hospital losing my sample), we are shooting in the dark. Of course the issue then is I would need to be off ABX for a week and what if I end up worse without them. I was actually better in terms of the urge this time last week (only two days into the antibiotic) than I am now.

I am so depressed and feel like my life is over. 
[cleardot]
 
 
Patria

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Posts: 26
Reply with quote  #11 
Quote:
Originally Posted by ModeratorKate
Hello Lynnhopes

Bless you, am so sorry to read your post, what a stressful time you have and continue to be going through.

Agree Trimopethrine appears to be non effective, in all but a few weak infections.

Hope someone with more knowledge will answer soon. in the meantime,
can you contact BHUK,  and or could you re contact the Bio film doc you were under, am sure they would offer you suggestions.

STRESS is a big factor in upsetting our Bladders, which is not surprising as it has the most nerve endings, and therefore easily disturbed.
Relaxation, though difficult at these times will really assist, and following the plain alkaline diets along with intake of Water or Lemon Water.

Please keep posting, as you know we understand and will always listen

Kind regards
Kate






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Erin
Patria

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Posts: 26
Reply with quote  #12 
Have you tried Hiprex? I suffered from UTIs for five years I discovered Hiprex on this forum and so far completely free for four months.
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Erin
laia_poch

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Posts: 19
Reply with quote  #13 
have you ever heard about ausilium nac by deakos? Please share your experiences!!!!!!!!!!!!!!!!!!!!!!
Patria

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Posts: 26
Reply with quote  #14 
No I have not what is it

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Erin
laia_poch

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Reply with quote  #15 
biofilm disruptor very popular on facebook
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