Chronic UTI anybody?

[22cyclist]

I can't seem to shake mine. I have been on and off of antibiotics since Jan 2015 and every time I come off of them for a day or so, my symptoms and my white count in my urine come back with a vengeance. I had hoped that removing my supra-pubic catheter would stop the infections, but it hasn't so far.

I feel so depressed. You see every time I get one of these i hallucinate and fall down everywhere, pee everywhere, am so confused I don't know who anyone is, I forget what people tell me, I repeat myself over and over. Then when the antibiotics are over and i have one or two days of clarity I have no remembrance of the whole thing except what people tell me.

I HATE THIS DISEASE....Did I mention that lately?

Lisa

[palmtree]

I really feel for you. I no idea UTIs could make you nuts until last summer when I had 2 episodes. Both times I had complete amnesia and, from what everyone tellers me, I was off my rocker.

I've done everything I can to keep everything sterile when I cath, was on prophylactic macrobid but it stopped working. They replaced it with Methanamine. That has helped a bit but right now I have another UTI and can't bear to go in and get tested, wait for the culture and finally get a few antibiotics. Then go through all of it again.

i though maybe getting a supra pubic catheter would help prevent the spread of bacteria but your experience has enlightened me. I assume you are self catching since in dwelling catheters allow bacteria to travel from the tube into the badder.

is there any explanation as to why you can't keep the bacteria out of a supra public? My uro I told me they usually close off the urethra after the operation. Could germs be getting in that way?

This is a complicated subject. I'm sure you have searched for all the answers. There are cranberry pills, Demannose (sp), drinking lots of water, using a super sterile cathing technic and prayer. None of these have worked for me.

I sure hope you can find a solution. This is very life threatening.

[Mamabug]

Try D-Mannose

It is a supplement that can be purchased at a health food store or on amazon.com. You can get it in a powder or pills. I preger the NOW brand, i buy it on amazon, and I prefer the powder.

Take a tsp, or whatever the recommended serving size is and take it daily, for prevention. For treatment of UTI's, you can take multiple doses per day; if you Google it, you can probably find info.

Because it is a sugar, similar to gkucise, and not a medication, it is safe.

[JerryD]

I have had UTI's back to back for a few months until I went to consult with a urologist . Then, after some real fun tests, I began taking 1000 to 2000 mgs of powdered vitamin C in cranberry juice, juice not cocktail, several times a day. I recommend that you try that vitamin C. I have had the antibiotics, as well. You cannot get the infection under control without them . Good luck

[hunterd]

just so everyone is aware most things that end in ose are a form of sugar. Please be sure to read the labels for the nutritional information.
I also get UTIs about every month or so. I have yet to find anything that will keep them at bay. I have not triedthe vitamin C or the D-Mannose, yet.

[Ga dancer]

I haven't had chronic UTI's, however, had quite a few. Taking cranberry pills helped me - cranberry juice sent me to gastro for an EGD to highlight the esophogeal ulcer, along with another in the stomach.

I hate to mention another doctor because I have a too long list of "ologists" and feel sometimes that the care was uncoordinated. I had many years of sinus infections, serial antibiotics and antifungals, 2 pic lines with weeks of IV antibiotics, and this led to yet more gastro intervention lower than the EGD because of all those antibiotics.

The ENT insisted I go to infectious disease, and blood work showed an immune deficiency in IgG responsible for upper respiratory infections. I had monthly infusions of IVIG, and it improved my MS more than the sinus infections. I finally have it under control and I wish I had listened to the ENT earlier, at least before the kidney failure from all those antibiotics.

Best wishes to you. I know how hard it is when you are sick on top of everything else we have to deal with.

[22cyclist]

Thank you all!

I think I will try the D-Mannose since I have heard of it before. I do self cath, but also go on my own. Just had my supra-pubic cath removed six weeks ago or so. My memory is so bad, especially with these UTIs.

Nice to know but sad to say I am in good company.

Lisa

[palmtree]

I think I will try the D-Mannose since I have heard of it before. I do self cath, but also go on my own. Just had my supra-pubic cath removed six weeks ago or so. My memory is so bad, especially with these UTIs.

Nice to know but sad to say I am in good company.

Lisa

You go on your own? I can't remember what that's like anymore. It must be wonderful! I haven't been taking the D- Mannose lately because it's so expensive but maybe I should get some more.

[rdmc]

You go on your own? I can't remember what that's like anymore. It must be wonderful! I haven't been taking the D- Mannose lately because it's so expensive but maybe I should get some more.

The best place to get D-Mannose is on Amazon (at least in the shopping around I've done.) The powder sells for around $15 as does the capsules. I used to use the powder, but I've switched over
to the capsules. I usually take about 1500 mg of D-Mannose and 2,000 of Vitamin C, 3 times a day. Keeping the PH of your urine low (normal is 7, try to keep it around 5) is supposed to inhibit growth of bacteria. According to a couple urologists I've had, the D-Mannose makes the bladder "slippery", . Well, not really slippery but makes it harder for the bacteria to adhere and become an infection.

Bad news about d-mannose, it only works on E-coli. So if your infection is caused by any other
bacteria, then it won't help. I saw a neuro-urologist many years ago. He felt that any kind of cathing (straight cath, foley, suprapubic) increased the incidence of infections, especially in women. He said there's just no way not to spread bacteria when cathing, so his emphasis was to make the bladder an unfriendly place for bacteria (through the low PH.) He was the one who started me on Methenamine Hippurate. You can buy the UTI strips on amazon also and you pay about $18 for 100...they test 10 parameters, one of them being PH level, so it's easy to monitor your PH. I just think some of us (not just MSers, this could also apply to the population in general) have an anatomical predisposition for UTIs and some don't...thus the difference between certain people who are always fighting them and others who don't get them.

But I cover all the bases, D-Mannose, vitamin C, Methenamine Hippurate, Doxazosin (to help empty the bladder), unsweetened cranberry juice,etc....and sometimes I still get them back to back. Other times I've found a respite from the infections....so I don't know what's working, but I take it all and hope it helps at least a little. Because in these days of resistant bacteria, I don't want to have to treat a UTI by being hospitalized because only an IV antibiotic will "kill" it. Been there, done that.

Hang in there.

[palmtree]

I have had UTI's back to back for a few months until I went to consult with a urologist . Then, after some real fun tests, I began taking 1000 to 2000 mgs of powdered vitamin C in cranberry juice, juice not cocktail, several times a day. I recommend that you try that vitamin C. I have had the antibiotics, as well. You cannot get the infection under control without them . Good luck

I am going to try that. It's a little sour going down but if it works it would worth it.

[Shoo]

UTI"S

I have been having Uti's since back in the early 2000's. The normal symptoms of a Uti.

Later on in the 2000's I would get Uti's not knowing I have a uti, my temperature would drop so low I wind up in the er. I am not sure what they call it but I call it the bear hug the er would put me in just to get mt temp back up. The first time it happened I saw the white light that's how close I was to death.

As of my last hospital stay in 2014 I have a foley cathaer. I was hoping to get rid and go back to self cath, never worked out.

2015 July, August, Sept. uti's. End of August was admitted to the hospital for another problem and ujti,
I was put on iv meds for the uti by the end of Sept I had another uti. The urologist prescribed the med Macrobid, I told the dr I was on that about 10 yrs ago and I got very sick, he told me either that or back to the hospital. I decided to try Macrobid thinking maybe I wouldn't have a reaction. Ha I had every side effect there is I was more sicker from the medine than the uti.

Now I'm having problems with the foley, I get so much sediment I think that's what the visiting nurse said that my urine won't flow through the tube. Now the nurse irrigate (sp) my bladder to cleanout the sediment So far it's working

That's my life with utis

Shoo

[rdmc]

The urologist prescribed the med Macrobid, I told the dr I was on that about 10 yrs ago and I got very sick, he told me either that or back to the hospital. I decided to try Macrobid thinking maybe I wouldn't have a reaction. Ha I had every side effect there is I was more sicker from the medine than the uti.



Shoo

Wow Shoo, sounds like you've had a rough time with UTIs. I, too, have them at pretty consistent intervals. What I wanted to comment on was your reaction to Macrobid.

I have an awful reaction to that med. I get a high fever, feel like I have the flu, and my breathing is impaired. It took me 2 times on the medicine before it dawned on me it was the Macrobid causing the fever and lung problems. When I looked up the side effects, sure enough, the flu/pneumonia like symptoms are caused by that med. I've had doctors who were not familiar with the reaction, and I tell them to check out the PDR and it's description of the side effect.

Last time I had a UTI, I was in the hospital and the Infectious Disease doc was assigned (because the UTI was pretty much resistant to most things.) I mentioned my reaction to Macrobid and he was very familiar with that side effect. I guess docs who deal with antibiotics are more aware of
what a particular med can cause.

As far as your sediment problem, have they ever discussed a suprapubic catheter with you? Both make one susceptible to UTIs, but I would think the supra pubic cath might handle the sediment better and be more convenient to flush your bladder.

[Shoo]

utis

Rdmc hope I got that right

The sub pubic cath my hubby and I both hope it doesn't come to that.

My urolist I had also said no. To many infections. The doctor is no longer with the group of doctors. I have one of the other drs and I communicate with him by phone (I'm homebound) He has not mention the sub pubic cath. But if it has to be I'll try it.

Macrobid gives me hot and cold spells, throwing up, no appetite, sleeping just a med I don't want to be on.

Shoo