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kerrym

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Posts: 18
Reply with quote  #1 
Hi, last week I saw the Prof for the first time. After three years of being told I had overactive bladder he has diagnosed me with a chronic UTI (no surprise to me).

I am on my 7th day of Nitrofurantoin 100mg twice a day. When I have taken this first two weeks (with no side effects) then I'll be taking hipprex.

Last night I woke with bad stomach cramps. This morning the cramps have gone just have a dull ache (which isn't too bad). My question is: How will I know if I am having a reaction to the abs or if it is a sign it may be working?

Obviously, I don't want to have to change the abs if I can help it.
Moderatorsusan

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Posts: 897
Reply with quote  #2 
So pleased you are seeing the Professor and hopefully will resolve things healthwise.

I would monitor symptoms over the next few days. If the cramps continue, or you develop diarrhoea then I would contact the Professor using the email address in your letter. I'm not sure if you are taking your abs with food but it may be worth doing this if you aren't to see if that helps. Some people find taking them on a full stomach rather than an empty is better. Certainly you shouldn't be getting cramps as a sign of the treatment working.

Hope things settle for you and you can enjoy the Easter break.

kerrym

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Posts: 18
Reply with quote  #3 
Thank you for your advice. I'll see how I go, I haven't had any cramps today so hopefully it was just a one off. I have been taking my morning ab with breakfast but the second one was a little while after dinner so that may have been the cause as you say.
Amandacc

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Posts: 10
Reply with quote  #4 
Hi kerrym
I too am taking these, i always take them after food so i have mine after breakfast and at teatime. Also i had a few stomach cramps but there has been a lot of stomach bugs going round at that time and i think it was just that as i have been fine since!

I am also seeing the professor and had been told by a urologist that i had an overactive bladder too, but like you the professor confirmed a chronic uti. Luckily I didn't take the meds he described as i wasn't convinced!

Hope you feel better soon xx
Amanda
kerrym

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Posts: 18
Reply with quote  #5 
Hi Amanda, lovely to hear from someone in the same boat. We are so lucky we've found the Prof. I thought I'd just have to our up with my symptoms for life.

I'm now approaching two weeks in nitro and haven't had any cramps since, so looks like it was possibly me taking my second dose a while after my dinner. I take it straight after now. Due to start hipprex on Saturday too. My overall symptoms are the same but as I'm only nearly two weeks in I'm OK with that. The Prof advised it would probably take a year anyway which I'm prepared for. Hope you continue to do well.
Kerry
ddj42

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Posts: 22
Reply with quote  #6 
Hi Kerrym,

Like you, I am being treated by the Prof. I am on Nitrofurantoin as well, (2 weeks at first, then a week on Doxycycline which made things worse, now on Nitrofurantoin again for over four weeks). I have seen no change at all in my symptoms and am going mad (strong feeling of urgency virtually all the time).
Are your symptoms bad as well? Could you please describe them to me? 

PML has not mentioned hyprex to me, although I know he often prescribes it. 

I am getting worried that the abs aren't doing anything at all. 

Thanks, 

Diane
Moderatorsusan

Moderator
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Posts: 897
Reply with quote  #7 
You may find the information elow of interest

OK, I've started treatment but I feel worse or no different after a few weeks/months

We can only say that it's a question of managing expectations. Lots of people jump into treatment and
expect that after a week or so things will suddenly get better and then struggle to understand why the
pain is sometimes worse or no different. It's often down to several things:

1. Your bugs and symptoms - whilst the bugs may be susceptible to the ab prescribed and be
knocked back often another bug occupies the space vacated and you may need another ab or add in
naturals such as Oil of Oregano, Grapefruit Seed Extract, D Mannose (if E. coli present or suspected).
Symptoms can change depending on the bacteria. It can often take several changes of antiotics efore you get symptom relief.

2. How long you have had symptoms. An embedded infection is just that, embedded into the bladder
wall so will take time for the cells to shed or release and come to the surface of the bladder wall and
become active in the bladder where the antibiotics can target them.

3. Other contributing factors such as hormones, thyroid, Lyme disease, gut health or other illnesses
which will weaken your immune system. Some of these you will have to explore and treat to add a
piece to your jigsaw.

4. Pelvic floor issues causing additional regional pain

5. Any ab resistances you may have. Bugs are unbelievably adaptive at resisting and mutating.

6 The inflammatory effects of infection in the bladder and body can often take a lot longer to resolve
than the infection.

Dogged persistence is the name of the game here and for some it can take weeks, for others months and for some years. Remember even if you are only seeing 5% improvement each day it's still improvement and whatever you do, don't compare yourself to others on here. That way leads to a downward spiral of negativity. Your bugs, your body, your rules. Focus on your healing and yours alone.

You must give this a good shot and take the good days and bad. If things haven't improved after 6
months or so then decide what you want to do but please try to be patient at first. This is not a quick
one week fix. Always keep your specialist informed about your progress. If things worsen significantly
or you get a reaction to medication etc. E mail them immediately. Medications can be changed.
If you suffer breathing issues or a tight chest, become dizzy or faint, develop a rash or heart
palpitations, stop your medication and get to A&E or the Emergency room. Take all medications and your latest letter from your specialist with you.

What is the recovery pathway likely to be?
The recovery pathway (a progression of the disease) is classically through a series of horrible flares
which come and go. We all go through this. When you are in treatment, each successive flare is
progressively milder and you may notice over months you will drop a symptom each time you flare
(maybe there will be less pain and the flow will be better but the urgency and frequency will stay and
then they will slowly go and the last symptom may be, say, burning, or itching inside the urethra). If
you weren't being treated the same ups and downs would be experienced, but maybe each time you
flare it will feel worse and worse as it progresses rather than slowly better. It is thought that the reason
it comes and goes with "break through flares" is because the bacteria get released when the bladder
changes its lining and "spits them out" from inside the bladder wall cells. This can be a natural
shedding which the bladder wall does as well as provoking the bladder lining though sex, exercise or
eating inflammatory foods. The bacteria are released into the bladder becoming planktonic (active) and
the immune system goes on alert and causes all the symptoms. Also, the bacteria release toxins as they die. More pain = acteria dying.

ddj42

Registered:
Posts: 22
Reply with quote  #8 
Where can I sign up for the 5% improvement? I have not budged from square one.

Sorry to be so negative but it's one of those days where I am one step away from banging my head against the wall. 

Thanks for the comments nevertheless. It may help others who are in a better frame of mind than me today. 
kerrym

Registered:
Posts: 18
Reply with quote  #9 
Quote:
Originally Posted by ddj42
Hi Kerrym,

Like you, I am being treated by the Prof. I am on Nitrofurantoin as well, (2 weeks at first, then a week on Doxycycline which made things worse, now on Nitrofurantoin again for over four weeks). I have seen no change at all in my symptoms and am going mad (strong feeling of urgency virtually all the time).
Are your symptoms bad as well? Could you please describe them to me? 

PML has not mentioned hyprex to me, although I know he often prescribes it. 

I am getting worried that the abs aren't doing anything at all. 

Thanks, 

Diane
Moderatorsusan

Moderator
Registered:
Posts: 897
Reply with quote  #10 
I know this is difficult. If you are really struggling on the meds you have een prescribed you need to let Prof know. Symptoms change a lot in the early days of treatment and people do despair of seeing any improvement. elieve me your story is not unusual and Prof and his team have seen this many many times.

If it helps there is a private support group set up for people specifically in treatment with Prof, Dr A and the other specialists helping people with these infections. HUK can give you more info if you give them a call.
kerrym

Registered:
Posts: 18
Reply with quote  #11 
Hi Diane, I've had my symptoms three years. Basically I constantly feel like I need the loo 24/7. I don't really suffer from urgency just sometimes it feels stronger than other times and especially after I have just been. I have to remember when I go so then I can try not to go again (although still want to) for a couple of hours, just so I stay within the norm. It's a bit of a mind game with me, telling my bladder I don't really need to go and should wait. I am optimistic the Prof can help me. He is the first person I have seen who talks sense. The Urologists at my local hospital are rubbish. I had three cytsoscopys, ct scans an a dilation (widening my urethra tube) when they couldnt give me an answer they settled for the OAB diagnosis told me to drink cranberry juice and discharged me.
ddj42

Registered:
Posts: 22
Reply with quote  #12 
Hi again!

My God, three years. I know for a fact I won't last that long - I have had no life for 15 weeks, thinking of my bladder and nothing else. I honestly don't know how much longer I can take it. 

Your symptoms seem very, very similar to mine (constant strong need, especially when bladder is empty). I write down when I go to the loo and "allow" myself to go when I feel enough time has elapsed, mostly every 2 hours. On a less than awful day, I can last longer. The feeling of really having to go is not quite as unpleasant as the false need, which drives me nuts in its relentlessness.  

I have seen three urologists (plus Prof). Two private, one NHS. The two private ones (vastly expensive) were complete rubbish indeed - they have no idea of the agony of the condition and don't take it seriously because (their words) "it doesn't kill you". Well, I beg to differ.

I have refused and will continue to refuse any invasive procedure. Useless, unpleasant and potentially damaging tinkering.  

My next appointment with Prof is on 3rd May. I think he is on holiday at the moment so there isn't much point in trying to contact him before then. Less than two weeks to go but it will feel like an eternity when every minute is like slow torture. 

It'd be great if you could let me know if the Hyprex makes a difference. 


Diane
Moderatorsusan

Moderator
Registered:
Posts: 897
Reply with quote  #13 
I'm not sure where you live in the UK but BHUK have local support groups where you can talk through your symptoms and people will completely understand.  The office can give you more details.  They are open until 2pm today and will listen.


kerrym

Registered:
Posts: 18
Reply with quote  #14 
Hi Diane, glad you have your appointment coming up. Stay positive, you have been lucky to find the Prof. After 15 weeks of symptoms so hopefully you're recovery will not be too long for you. I so wish I had heard about him sooner. I have read on this forum that the infection usually clears before the symptoms as the bladder stays a bit battered for a while until it can heal. Hopefully the Prof. Will have some positive results from your urine sample and be able to reassure you that you are making progress.
Best of luck.
Kerry
ddj42

Registered:
Posts: 22
Reply with quote  #15 
Thanks, Kerry. 

When / if I get better, I'll post my story on this forum.

Hope all goes well for you as soon as possible. 

Diane
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