12 replies to this topic

[Avocado Baby]

Hi everyone,

Well, as you may know I've been fighting UTIs for at least a couple of years now. My GP has just throwing Keflex at me and last time I saw the consultant he said 'there are a few things we can try. I'm not ready to shoot you yet'. Er...thanks! I've done lots of research on the bug and knew it was bad! Anyway, I've been feeling worse and worse and like I had warm oil in my veins instead of blood!

I had a urology appointment about a month ago now and my heart sank when I saw the same registrar who did botox on my bladder in May. He only asked me about that. I tried to tell him how awful I felt but he was very dismissive and told me come back in 6 months!!

I felt ill, had cold sweats (I know I should have gone to A&E) I was so depressed cos everyone had just given up on me, I spent pretty much two weeks lying in bed and hardly eating. I told my GP that and he 'helpfully' informed me that it was bad to sleep during the day!

I went in and said 'what will it take for someone to take me seriously?! I'm really ill'. He said 'there's nothing much they can do. Other treatment would be more invasive (who cares?!) and further treatment would just be throwing Keflex at it' !!!!
I said 'look at me! I'm grey'.

Apparently I 'just looked cold'. He didn't take my temperature, blood pressure, pulse or anything! I physically and emotionally didn't have the energy to tell him anymore and he was practically pushing me out the door anyway!!

I had a tight chest the whole day but thought it was just cos I was anxious. The next day I couldn't physically stop cough long enough to speak and it got to the point where I couldn't breath and my chest hurt! I went to A&E and they gave me air and I managed to clear it. My pulse was 110!
They took blood and said my infection markers were triple what they're meant to be but it wasn't in my chest. So, I explained what was going on and they admitted me to hospital. I stayed there for 12 days and had IV antibiotics (they finally found the right one)

The hospital beds killed my back cos I have severe scoliosis!

So, the consultant has confirmed what I already knew. It's a bug that becomes resistant to whatever you give it, so it will keep coming back in different forms until they can't kill it anymore! All they can do is give me IV until it doesn't respond anymore.

I wondering how to finish myself off first before the sepsis and peumonia get me!

Sorry for the depressing post. I just needed to tell you all!

Thanks for all your support!

[jules]

Avocado baby I am so sorry, but don't give up fighting yet, I am having a porta-cath put in soon so that I can do my own IV antibiotics at home for my chest, plus I am going on to IV antifungal drugs too so maybe that is an option for you too.

The most important thing is that everytime you have a UTI make sure they send a sample off to your local microbiology dept so that they can tell you what antibiotics the bug is sensitive to that will help with the resistance too. Giving broad spectrum antibiotics is not the answer for you anymore, and really shouldn't be for anyone with a chronic infective problem.

If you want any more info PM me, but definitely don't go giving up, I won't if you don't....deal :-)

Big hugs

xxx

[Avocado Baby]

jules, on 10 November 2011 - 01:34 PM, said:

Avocado baby I am so sorry, but don't give up fighting yet, I am having a porta-cath put in soon so that I can do my own IV antibiotics at home for my chest, plus I am going on to IV antifungal drugs too so maybe that is an option for you too.

The most important thing is that everytime you have a UTI make sure they send a sample off to your local microbiology dept so that they can tell you what antibiotics the bug is sensitive to that will help with the resistance too. Giving broad spectrum antibiotics is not the answer for you anymore, and really shouldn't be for anyone with a chronic infective problem.

If you want any more info PM me, but definitely don't go giving up, I won't if you don't....deal :-)

Big hugs

xxx

Thanks Jules,

I know I shouldn't be so down about it! You're such a fighter! (sorry, I bet you hate being told that) To be honest, I don't trust my hospital, having sent me home on one oral antibiotic tablet per night as a preventitive!

I'm looking into moving to London.

I'll keep you posted.

Again, thanks!

How are you doing? xx

[Mary-Anne]

My S.O. is considering trying this Microcyn treatment
discussed in the Care Cure forums.
There are multiple threads where it is discussed,
but here is one:

http://sci.rutgers.e...php/t-9240.html

In the discussion there, it works for some people
and not for others.

Mary-Anne

[Aparr]

I am so very sorry to hears this news!

My thought and prayers are with you.

Keep fighting and please continue to
stay in touch with all of us. You have
a lot of love and support here.

[greybeard]

Hi AB. It's good to let it all out, and where better than here? Sounds as though you need to bypass your GP and get in touch with that consultant if it flares up again. Sending you healing thoughts. Stay strong.

[bongorum]

That is the sort of thing I'd expect from a craphole of a country like mine where the doctors are generally all knobheads and the care is slipshod and primitive; but for those of an advanced land like England to be dispensing that sort of beggarly treatment and fatalistic diagnosis to a patient I find utterly shocking. It's difficult for me to accept that the combined knowledge of all those physicians you've consulted can find no solution to your problem. We can measure the distance between the sun and the earth to a nicety and yet we can't kill a little bug. You really mustn't allow yourself to yield to despair, but do as GB says. This actually scares me something horrid. As if bedsores weren't bad enough.

Edited by bongorum, 28 November 2011 - 09:26 PM.

[Tetracyclone]

Mary-Anne and all-

I have been using microcyn treatment for a year now and it has been very dependable at keeping the bladder healthy. I'm a happy customer and VERY glad to have escaped the medical systems haphazard thinking about use of antibiotics.

In addition, as I slowly got all the bugs out of the urethra, where they chain themselves to the skin like sinners in hell, the general muscular tension in my body has abated significantly. Muscle tension is my worst neuropathy symptom, being ramped up for any sort of discomfort, and it appears that there had been residual infection too low to measure as a problem, but which was still causing my body problems!

I have not read through the Rutgers thread in a long time and I think it is now twice as long, but I hypothesize that there is a wide variety of methods used to infuse the product into the bladder, and that should account, at least in part, for the fact that some people have success and some do not.

I will put it on my list of to-dos to study that thread again. It functions as an "open source" project or investigating bladder health.

[LostHillsRoller]

Avocado Baby, on 10 November 2011 - 12:49 PM, said:

Hi everyone,

Well, as you may know I've been fighting UTIs for at least a couple of years now. My GP has just throwing Keflex at me and last time I saw the consultant he said 'there are a few things we can try. I'm not ready to shoot you yet'. Er...thanks! I've done lots of research on the bug and knew it was bad! Anyway, I've been feeling worse and worse and like I had warm oil in my veins instead of blood!

I had a urology appointment about a month ago now and my heart sank when I saw the same registrar who did botox on my bladder in May. He only asked me about that. I tried to tell him how awful I felt but he was very dismissive and told me come back in 6 months!!

I felt ill, had cold sweats (I know I should have gone to A&E) I was so depressed cos everyone had just given up on me, I spent pretty much two weeks lying in bed and hardly eating. I told my GP that and he 'helpfully' informed me that it was bad to sleep during the day!

I went in and said 'what will it take for someone to take me seriously?! I'm really ill'. He said 'there's nothing much they can do. Other treatment would be more invasive (who cares?!) and further treatment would just be throwing Keflex at it' !!!!
I said 'look at me! I'm grey'.

Apparently I 'just looked cold'. He didn't take my temperature, blood pressure, pulse or anything! I physically and emotionally didn't have the energy to tell him anymore and he was practically pushing me out the door anyway!!

I had a tight chest the whole day but thought it was just cos I was anxious. The next day I couldn't physically stop cough long enough to speak and it got to the point where I couldn't breath and my chest hurt! I went to A&E and they gave me air and I managed to clear it. My pulse was 110!
They took blood and said my infection markers were triple what they're meant to be but it wasn't in my chest. So, I explained what was going on and they admitted me to hospital. I stayed there for 12 days and had IV antibiotics (they finally found the right one)

The hospital beds killed my back cos I have severe scoliosis!

So, the consultant has confirmed what I already knew. It's a bug that becomes resistant to whatever you give it, so it will keep coming back in different forms until they can't kill it anymore! All they can do is give me IV until it doesn't respond anymore.

I wondering how to finish myself off first before the sepsis and peumonia get me!

Sorry for the depressing post. I just needed to tell you all!

Thanks for all your support!

[LostHillsRoller]

Don't give up..When one door closes another will open. I know its hard but just have faith and it will work itself out. About two years ago I was confined to a bed for almost a year for a decubitus ulcer and never thought I would get back in action. But just when I thought it wasn't going to go right for me I just motivated myself to heal?? Yeah it may sound weird but I am better now. Keep your head up..

[Django]

Im.sorry you're suffering. Have you tried the drug that turns your urine to formaldehyde? I haven't had to use it but my first and favorite rehab doc recommended it t
o me if I continue to have uti problems. Its called methanine and its an antiseptic rather than an antibiotic. I wish you the best.

[Smileyblue]

I know ho you feel Hun..

All I can say is "NEVER give up!"

Still fighting the same fight heree too..

Hugs n good wishes..

Smiley

[Stickman]

Hi there, i've been going through the same problem mself lately, been getting one uti after another along with fever, fatigue, nausea, all the good stuff. Haven't had ot go to the hospital for it, but they have been giving me keflex too which mi afraid i'll get immune to too. Dont have much positive to say about it at the moment, just wanted to say ur not alone!