D mannose..Not Working.... and more..

Not sure...I saw a specilist in DC 4 weeks ago...she is a nurse practioner that specializes in Tick Born diseases/ Interstitial Cystitis and Recurrent UTI....she had ordered TONS of specialized tests for me...1 in particular from a lab called Pathogenius..they do this amazing IN DEPTH specialized testing on your urine...(she also had vaginial and nasal done on me as well)...so check this out..on January 24h I went to the ER feeling like I had a UTI..they said it was negative.  That VERY SAME DAY I shipped my urine out to Pathogenius....it came back with 61% Ecoli!!!!!!!  The hospital here even grew my urine over 24-48 hours...and still nothing they said it was CLEAN!!!! It wasn't!  Anyway I wasn't able to follow up with her until yesterday...so she is putting me on Nitrofurdantin?>>spelling..its like macrobid but 4 times a day...I didn't want an antibiotic but I have never tried this one and right now we need to clear this up so she can treat the even bigger issue they found...A Mycoplasma...a bacteria..that she feels is/has contributing to breaking down my bladder lining..making it easier for the ecoli to constantly stay in there (Im not saying it the same way she did) but yea....I don't feel a difference with upping the D mannose yet but I did get diahreah ....and I think it was from the increase of that.  That is also another reason why I need to get this controlled with an antibiotic before it hits my kidneys....  I guess 1 teaspoon would have been good for maintenance..but not while I have an infection..and obviously my infection has NEVER really gone away b/c each time the REGULAR labs here check it ...they say its clean when CLEARLY I now know it was not.

It sounds like your lab did a good job, and it also confirms what I read on the D-Mannose website I looked at - that the bugs get nice and comfy in your bladder lining and are difficult to shift.  Nitrofurantoin is a common antibiotic for this type of infection and it will clear up your symptons, but probably only temporarily again. I would recommend you do the D-Mannose for three months as well.  Did you find the website?  Read it and see what you think.  Please remember not to let them say it's not working so we'll give you Levo again (or Cipro).  You may be in real danger of being floxed if you take any more - check out a site called floxie hope if you're not sure what I mean.  Hope it goes away this time, M x

thanks for telling me about Floxie hope but I could not find any where on that site where it tells you what that is???  What are the signs symptoms..etc.

Have the doctor checked to see if your bladder drop this happened to my sister

Because she would have uti all the time

Hi nnj925, Can you tell me where did you find the nurse practioner in DC specialized in Lyme disease? I have been having UTI's for the past year, almost once a month. I had a positive diagnostic for Lyme last year when the UTIs started. The doctors around here do not know any thing about Lyme. My infectious disease doctor says that the UTIs do not have anything to do with the Lyme, but I think he is wrong. The only thing that the doctors do is to put me in antibiotics.  Thanks

Hi Miriam,

Can you tell me is there a test to see if I have been floxed, as I have been put on multiple antibiotics and have suffered terrible symptoms.

Thanks,

Sam

Uros love cipro. Mine gave me a ton of it. Then I got a infection while on it. I was pi**ed. Why load me up on stuff that is not only harmful but did nothing. It got to the point if I took one I felt real bad. That's when I saw posts in here about being floxed and googled being floxed. I had alot of the symptoms.

Hi Sam, sorry, I didn't see your reply til just now.  There is no actual test for floxing so one has to do a bit of detective work. 

The quinolones are Ciprofloxacin, Levofloxacin, Ofloxacin and Moxifloxacin but there are also many generic names.  If you know the names of the antibiotics you took you can google them to find out if any were quinolones (or fluoroquinolones). 

If you find you have taken one or more of them make a list of what side effects you have felt then google the full list of side effects and compare the two.  If you've had the same side effects then I guess you can say you've been floxed.

If you have been floxed you should go to one of the sites such as Floxy Hope to find out more.  This thread started by the Moderator gives several useful addresses:

https://patient.info/forums/discuss/fluoroquinolone-toxicity-syndrome-427305

There are several discussions under the heading Quinolones on this site with plenty of advice and information so look there if you haven't already.

Hope this helps!  Good luck,

Hi there, do you happen to know if D Mannose only works on E Coli bacteria? I have constant UTI's - 4 different bacterias, one of which is E Coli. I live on antibiotics, mainly Nitrofuratoin which I have bad reactions to but I went off the daily dose and am now in so much pain. None of these antibiotics are working, just temporary and then when I go off they are back. I take lots of probiotics as well. I am in bladder hell. I started the D- Mannose again which I had never done the strong doses recommended but that probably won't help for some time. I guess I have to do the AB in addition to the D-Mannose. Any suggestions would be greatly appreciated.

 

It's not a good idea to 'live on' antibiotics as the bugs you have can mutate in just a few days and then you end up with a colony that are resistant to whatever you are taking.  You'll also end up with bad digestion as they'll knock out the bacteria in your gut.

If your doc has told you which 4 bacteria you have did he/she prescribe the nitro and other ABs?  They usually know which AB to give for different bacteria.  The fact that the symptoms come back when you stop taking ABs suggests that your bugs are indeed resistant.

I don't know if D-Mannose works against anything else apart from e-coli, but I know that e-coli can be the hardest bug to shift and D-Mannose, if taken correctly, can prevent it establishing a colony in your bladder.

Be careful with your antibiotics.  If you're offered Cipro (or nay other fluoroquinolone) ask for an alternative as Cipro and the other FQs can be very damamging to your body - some people are left permanently disabled (i'm not joking!).

Good luck with it all.

 

Hi I cannot take anything in liquid form I start to bork at the taught of it are the d-mannose pills just as affective an can you tell me which brand is best

Thanks for your response. No, it's not good to live on antibiotics. They do cultures and the different bacterias react to different antibiotics, Cipro being one of them. I have taken that and many others. I really don't know what to do as this is how it is for me. My body is trashed from these drugs and infections.

 

Bad luck, Bill, MRSA is hard to get rid of - I hope you've managed it by now (with another ton of a different antobiotic, I expect). 

Cipro is also hard to get rid of - it (or Levo or the other FQs) can stay in your system for a long time after you've taken it.  You may even forget you were given a ton of it, then next time they prescribe you some - BAM, it gets to you.  Doctors will deny there's a problem but if you read the information leaflet (with a black box warning if you're in the US, just to make sure you notice it!), you'll see theres a host of problems you could get - and people do get.  Be careful, and good luck this time.

So far so good.after 3 other anti biotics feel better.now the fear of not knowing what's next.guess it's a waiting game to see if we killed it or I become a carrier.

That's good news.  Just remember to never accept any fluoroquinolone ever again!  It might be a good idea to keep off any steroids or NSAIDS (whatever you call ibuprofen in the US for example).  One guy I know of had very little effect from Cipro then moths later took just one ibuprofen and now he's a wreck.  Only saying....