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Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #1 

Hello everyone,

I don't know if anyone has tried this UTI oral vaccination? (Uro-Vaxom - made in Switzerland) I had a Polish GP who came to local GP surgery, and asked me if I wanted to try it. I'd never heard of it.  It is more for people who suffer recurrent UTIs and that's not my problem anymore, but I got a private prescription from him and sent off for it anyway!!  I've been on it for about 2 months (you get 90 days' worth in the box).  The idea of it, is that it is supposed to boost your immune system against E.Coli infection, as it contains some type of deactivated e.coli.  You take one capsule in the morning before eating anything.  It is only available in Switzerland and Germany I think.  I don't know why it is not licenced in the UK (maybe they can't prove it works, I don't know).

I think if you def suffer from interstitial cystitis with no signs of infection at all, then it wouldn't be worth bothering with, but if you also got lots of uti's as well, then it might be worth a try (but it was expensive though).  I speak a bit of French and German, and I looked quickly on their cystitis forum message boards, and some of the women are trying it over there with mixed results.

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #2 

That's really interesting  and after I googled uro-vaxom I discovered quite a few vaccines are at the trial stage.

 

Hopefully this will mean that a potential cure is not too far away for chronic BC. However, I'm not sure how effective they would be against a permanent, embedded infection, resistant to a/bs which I think I may have. Still, this gives me hope so thank you for making this post! As you might of guessed this has never been mentioned to me by 2 urologists and 1 gynaecologist....I imagine because they've never heard of it!

 

Millie

Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #3 

Probably.  I'd never heard of it, either.  It's made by OM Pharma, but I had to get it via an internet pharmaceutical warehouse in Switzerland.  It was quite a performance, with having to fax the prescription and everything.

I still couldn't really say whether it works or not.  In Germany, on one of the forums, one woman said that as soon as she stopped the course of this oral vaccine, she got another UTI!  But the manufacturer replied, saying that her UTI possibly would be less severe than if she hadn't taken the course.

If the uti is not caused by e.coli either, it also probably wouldn't have much effect.   Jury's still out on this one.

Also, (because I am in France a lot) another thing I've tried is MICTASOL.  This one you can buy o.t.c. from any pharmacy there and in Spain too, I think, and it is a urinary antiseptic, and I think works by some sort of chemical reaction in the bladder and forming formaldehyde in the urine to kill off bacteria (not surprisingly, perhaps, it's not available in the UK!).  You take 3 bright red pills 3 times a day.....    A few years ago I tried it, and it worked then, for a temporary period, but they don't do anything for me now.

What is funny, is that abroad, you don't seem to be able to get the sodium citrate treatments that we can even buy in the supermarket here!  like cystopurin etc.

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #4 

something else of interest.....when d-mannose first came out the manufacturing or extraction process used formaldehyde amongst other things (since changed) and although this was washed out so the end product was clear I have often wondered if some remained and it was this that was so effective in stopping my UTIs.....rather than the d-m itself. New d-m, i.e the version without formaldehyde, doesn't work at all for me.

 

Millie

Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #5 

Yes, I think it was about 135 Swiss francs for the 90 day supply which included their postage costs from Switzerland. (it's about 2 Sw F to the pound) but they also did 30 days for about £25 but they recommended the longer course, so I thought "in for a penny, in for a pound" but it was a lot of ££££s !!   I got it through the internet pharmaceutical supplier Farmamondo.

I still don't know really if I would recommend it or not. Sorry to be so vague.  But it's a lot of money to spend if it doesn't work.

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #6 

sorry, more questions...

 

Do they reckon you should be cured of UTIs after the 90 days are up?

 

Thanks

 

Millie

Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #7 

Well, what they say is that the vaccine works by being de-activated e.coli  (but as there are lots of types of e.coli, i don't know if it is just one type or all), and this is supposed to trigger your own immune system to react more strongly against e.coli living in the wrong place in your body.  It is an oral vaccination, a capsule a day.  You have to take it first thing in the morning, before eating anything.  So I would imagine that some people would react to it better than others, depending on how well the vaccine is taken up in their body and also how well their own immune system works, when it has this trigger.

The G.P. that prescribed it for me, said that his wife had had concurrent UTIs and it had worked for her.

OM Pharma have got a website, and you could also check that out.  I strongly doubt that they would absolutely guarantee no more UTIs after taking their vaccine, particularly if the UTI isn't just caused by e.coli.

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #8 

Thanks Carey.

 

That's really interesting as my UTIs are definitely due to e-coli.

 

I shall look at the website.

 

 

Millie

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #9 

Hi Carey

 

I've looked at the website and it is very encouraging for people like me. Would you mind saying if you've had any infections since starting with the vaccine? You say that recurrent UTIs aren't really your problem any more so is that why it's difficult for you to say if it's working?

It seems that the manufacturer is recommending a 3 month course every year for continuing immunity which, although expensive, I'd gladly pay if it worked - I've paid out a small fortune over the years in different treatments for this illness so 'in for a penny.....' It certainly seems more preferable to long term a/bs anyway.

On the manufacturer's website there is a forum where someone mentioned they have vaginal e-coli (which I believe I also have) and although the company does not state categorically that the vaccine will help with this they seem quite confident that it might, given the way the vaccine works by boosting natural immune systems. This presumably also negates the bacterial resistance problem.

I find it staggering that this vaccine is readily available seemingly throughout a good part of the world including most of Europe yet Consultants here don't seem to have the slightest idea about it.

Thanks again for making this post.

 

Millie

Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #10 

Well, it could be that the Committee on safety of medicines (I'm not sure if they are still called that, but the medical board that oversees new medicines) feel that there isn't enough evidence that it works, or maybe there's some other reason.

I had about twelve bacterial caused UTIs starting nearly six years ago.  It has "mutated" into intersitial cystitis (which I have only just had confirmed).  Along with many other people on this site, I believe that continual UTIs caused my present problem.  

Personally, if I were you, I would go to any length to try to stop UTIs happening in the first place, simply because, for many of us, that is how we got interstitial cystitis, by the damage that UTIs did to our bladders!

I would think that, because it's "systemic" (like say Diflucan for thrush) if this vaccine is going to work, it would work throughout the body, in the vagina as well as in the urinary tract/bladder. 

The question is, does it work for everybody or indeed anybody.  I only got it because I try everything.  I can't say that cystitis and I.C. has ruined my life, but it has wrecked part of it, plus every single holiday I've been on in the last six years, so therefore I'll try anything, and as I'm still able to work, at least I can afford it at the moment anyway.

Perhaps you could try the 30 day course anyway, just to see.  At least that wouldn't be so expensive.

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #11 

Believe me, if you knew everything that I have tried in order to avoid getting UTIs I would run out of space to type it all in here. If I stopped taking a/bs and resumed a s*x life I would get about 40 infections a year or, probably, one continual one. I think I can safely say that I have tried and continue to try just about every tip known to man, read every book, taken every known alternative remedy, consulted homeopaths, acupuncturists, aromatherapists, reflexologists, seen 3 consultants, STD clinics, bottle washed et al, d-mannose, uva ursi, cranberry juice/capsules, potters antitis, aloe vera, collodial silver (sp), garlic capsules, long term a/bs, low dose a/bs, urethral stretches, antiseptic sprays, washed my private bits so many times that, if it were possible, I could probably see my own reflection down there...and the list goes on and on (forgotten loads), yet the UTIs are relentless. I know that IC may be around the corner but there seems to be NOTHING that I can do to prevent this from happening. So a vaccine is interesting.

 

Thank you so much for the tip off

 

Millie

Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #12 

Yes, well, exactly.....  every time some new possibility of a cure comes along, I have to try everything and, sometimes I think some things work for a while, and then after some time, it seems as though they stop working.  I sometimes wonder if e.coli is transmitted INSIDE the body.  My s*x life is also more or less on hold, because my partner knows it can make it worse, and that's very nice of him and all that, but it's not normal and I am fed up with it.     It still remains a mystery to me why some of us get cystitis and other people either just have it the once, or even never at all.  What is it that is different about us, basically?

Well, anyway, if you decide to get this vaccine, I really hope it works for you.  It must work for some, otherwise why would they bother going into production with it and so on.

Millie

Registered: Dec 3, 2003
Posts: 778
Reply with quote  #13 

Your INSIDE theory is the same as mine, and I think I'm getting somewhere with it. Basically I have a leaky gut (you can be tested for this) and one of the things that can leak into your bloodstream and hence into organs is bacteria. I get e-coli UTIs and e-coli reside in the gut and digestive system in normal healthy people but they stay there and are dealt with by all the good bacteria in the area. In my case, the theory goes that, not only do the e-coli get out, but my good bacteria have been wiped out by years of a/bs. Apparently most people with chronic conditions like us have a leaky gut. If you google it on the internet you'll find a lot more info which will explain it better than I can. Basically, no matter how often I try to clear e-coli with a/bs the little so and sos come back through my gut lining. My bladder happens to be the organ affected; however, in some people this process can kick off all kinds of auto-immune illnesses.

Treatment to heal the gut is long winded - I'm only a few weeks in. Supplements and diet changes appear to be the only way, there is no magic fix.

I wonder whether some cases of IC are also triggered by leaky gut as IC is sometimes called an auto-immune illness. Not because of the bacteria but apparently leaky gut also triggers a hyper sensitve immune response - all quite complicated. Maybe the IC diet inadvertently also helps to heal the gut lining as both diet type requirements are very similar in a lot of respects. Who knows?

Like you, I have known for a while that the bacteria are getting in from the inside and so, therefore, all the personal hygiene stuff, although relevant, does not make the slightest bit of difference. And neither would anything else I have tried.

 

Millie

Carey

Registered: Dec 18, 2005
Posts: 171
Reply with quote  #14 

Yes, I will Google it, as this sounds very interesting and I think this theory would answer a lot of questions.  I really think there is something in this line of thinking that needs further investigation by the "experts".

JulesB

Registered: Jan 17, 2006
Posts: 5
Reply with quote  #15 

Hi Millie and Carey

Thank you for getting back to me regarding the vaccine - what a great thread to read - I really appreciated your logic and reasoning regarding leaky gut too.  A couple of years back - probably around the time I started with infections I had my bowl investigated for chronic inflammation, Crones, etc so maybe there is a link.

 

I will take a closer look at the internet and I will also take some info to my consultant who I see again next week.

 

Also, great to know I'm not alone in my constant almost obsessional pursuit of an answer. 

 

Thanks and good luck

Julia

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