Mayo Clinic

[gm37]

Has anyone been to Mayo clinic and what kind of experience was it? I am frustrated. Treatments for chronic UTI's keep bringing the c-diff back and I can't get my doctors to come up with a plan that works. Help. Is a trip to Mayo worth it? Any other ideas would be appreciated.

[Bobbie]

Just got back from trip to UK & am snowed. I will Email you tomorrow re. your questions. (I, too, have chronic UTI's.)

[Destiny366]

My physician (infectious disease specialist) told me that anytime I need to be on antibiotics, I must also take Vanco 125 mg 4 times/day to prevent
c-diff from coming back. Once you have been infected with c-diff, you will always be prone to getting it back if you are back on antibiotics.
PS: I am a registered nurse. Got cdiff after colon surgery with 4 relapses so far. Still on a Vanco taper and will be for 12 more weeks.
I hope you feel better real soon!
Carol

[fire7163]

Destiny:

Sounds exactly like my story except that I'm a Firefighter/Medic. I too had the sugery and numerous relaspes. You will beat this, it may just take longer than you like. I finally ended up using a Xixfian chaser taper after my Vanco taper to get a head of it. Just don't expect to get well overnight...just won't happen, but little by little you will get stronger and better. Hang in there. You're not alone in this

Fire

[gent76]

I've been to Mayo Clinic. They are pretty good about getting things done, all testing and results back in a timely manner.

[sks001]

GM37,

One of the leading expert doctors on C-Diff is in your city - Dr. Mark Allen. I believe he is probably listed under the Doctors forum. You might want to make an appointment or at least contact his office for advice,

Sure wish I had someone like that in my area.

[gm37]

Thanks for all of your support and suggestions. I did go to visit Dr. Mark Allen. That was really of no help.
I am having difficulty dealing with the fatigue. My internist is sending me to an immunologist to see if that will help.
I know I am not alone here, but I am frustrated and often frightened. I have collapsed on the floor at my job and at the grocery store in the last two weeks. I am so weak, I cannot stand up. Dr and hospital tests show nothing. I am so healthy. Hmmmmmm. Just does not make sense to me.

[feelinghopeful]

That was very disappointing to read. Why wasn't Dr. Allen of any help? Did he not believe you have C-Diff or was he unwilling to work with you? Do you have a hard time getting a postitive test? I always had that problem. Only had 3 or 4 out of many since early last year that came back positive. I'm sorry to read of your woes.

I have a friend who's been exposed to C-Diff for a long time (husband had it but they didn't tell her it was contageous, he's been in and out of the hospital for years) and now she has some strange symptoms - a few days of red blood in stools last week, exhausted, terrible constipation for some time and extreme dizziness (which I believe you had). I don't know how she's driving 1.5 hrs each way every day to visit her husband. She's now going through tests. I wonder if it will turn out to be C-Diff. Sometimes it's harder to diagnose without D.

[gm37]

No, I am sure he believed that I had it since I took him the lab results from the colonoscopy. Maybe he was having a bad day.
You are right about the dizziness. Thank you for your thoughtfulness. I am usually quite upbeat, but his has really gotten me down this week. I have a UTI and it is difficult to get rid of with the choice of drugs. I completely buckled at work one day and at the grocery store the next week. It was quite frightening. They told me it was the result of the infection and it will all clear up in time. The feeling was very scary. Sitting on the floor and being at the mercy of strangers is not comforting.
Please pray for me.

[sks001]

GM37 -

Have you checked the FAQ's forum that you select from the drop down munu at bottom of page (not the one on top of page) about UTI's. Think there is some good info there.

I had one UTI after C-Diff (never had one before in my life) and gave me Bactrim and found out I was allergic to sulfa. ER treated me awful - dismissd me that I was soooo sick after taking Bactrim.

I empathize with you about the fatigue. I have it and dizziness real bad even though I don't have C-Diff anymore. It's o aggravating when blood tests all come back fine and doctors give you that look like you're a hypochondriac.

Don't know how you are working and going to grocery store. I can't.

[feelinghopeful]

Do you happen to know what the bacteria is that's causing the UTIs and have you heard of D-Mannos? It appears to be working for some people but has to be used regularly once the infection is gone (to keep them at bay) if you have a chronic problem. I believe it mainly works on e-coli and of course the sites that sell it say it works for other bacteria as well. It's worth a shot if you haven't tried it already.

The reason I ask if you know the bacteria is, I thought I was having chronic UTIs (for which I did try D-Mannos) but nothing but blood in the urine was showing up. The situation was further complicated by the fact that I'm allergic to Macrobid, giving me what appeared to be incredible infections with high fever, flank pain, congestion, etc., but it was the Macrobid and the infections turned out to be a urethral condition that I've just recently (within the last two weeks after what seemes like an eternity) cured with estrogen cream. I'm telling you, it's been one heck of a conundrum between the C-Diff and seemingly chronic UTIs. While Macrobid is supposedly safe regarding C-Diff, it did bring it back for me. I never should have even condidered taking it before making sure I had a bacterial condition.

A few doctors who are not at all on their game think I'm neurotic because of the negative C-Diff tests and negative bacterial tests for my urine. I hate to bash doctors, they do their best but they're often woefully misinformed and disinterested in solving problems. It's black and white for most of them. And they're trying not to get sued, which is undertandable. Even the doctor who gave me the estrogen cream upon request, when asked if it was absorbed into the blood, said no. Of course this is incorrect. Anyway, C-Diff is awful. There are worse things to have but in my life, this has been a disaster.

The other thing I'm going to write only as information in case it's useful to anyone, I took massive doses of vitamin C trying to thwart these 'UTIs' and as it turns out, acidic foods and drinks profoundly irritate this problem. I finally diagnosed the problem by process of elimination when even the acid in a glass of Sprite caused discomfort after a brief stretch of relative comfort. I found the condition on the internet after two doctors could find no bacteria but always trace blood. I suggested to my GYN trying the estrogen (which was a recommendation from the internet) so she, being very nice, agreed to try and within a week it was gone. Of course, with estrogen you really have to be wise in how you use it. I use the tiniest amounts every two, three days but the chronic irritation is thankfully totally gone - and I even put lemon on my fish last night with no trouble. For the moment the C-Diff and urinary tract irritation are gone. I'm in paradise and I wish this for you and everyone else going through this.

I hope you find a solution to this awful cycle you are in and I will pray for you. I am so sorry. I truly understand how you must be feeling. I apologize for the long post but it's throught posts like this and on the internet that I solved my problems. I'm trying to pass it on.

[cindym]

gm37- Have you had your b12 levels checked? This is a test outside of the regular bloodwork they do. I had such bad fatigue that I could hardly walk across the floor and just ordinary activities seemed overwhelming. It seems that ANYONE having diarrhea for lengthy periods of time or gut infections are prone for B12 deficiencies. Ask your doctor! Not only that even if you are not low on B12 (although I suspect you are) they can give you shots to build you back up. They seemed to really be just what I needed and I take them now once per month........without them the fatigue returns dramatically.

[gm37]

Thank you all for your world of information. I have been taking a lot of Vit-C and I think I will stop that.
I called the doc last night due to a fever and just plain not being able to get out of bed all week. He told me to go to ER if it got worse. Had D all night so went this morning. They started my back on the Vanco. Don't know if that is what I should be doing or not since I did not get to see my regulat dr. I am frustrated beyond belief. I sobbed at the ER and I am sure they thought I was nuts. This thing can make you a bit looney.
My internist is sending me to an immunologist to see if that will help build my up so I can resist infections. I hope so. She thinks this is the next step before trying Mayo.
Thanks again for all of your understanding.

[Nancy1]

gm37,
I am sorry that you are having such a bad time. You are certainly right that cdiff can drive you nuts. Take a look at Coping with Cdiff in the FAQ section; I printed it out and read it every day.

FYI, I used to take a lot of Vitamin C all the time, to ward off colds. During and after cdiff, though, I find that it gives me D, so I don't take any now.