vanco failing?

[musicgirl180]

I' ve had C-diff since December. On Vanco since January. Seem to be relapsing even though I'm still on the full dose of Vanco. Does this mean I have VRE? Can someone recover even without Vanco? I'm 38- and can't believe this is happening. Afraid of dying.

[Bobbie]

music girl,

I doubt if you have developed a tolerance to Vanco. I was on it for 4 yrs. the lst time (plus IV for another problem). Cindy has been on it for 7 yrs. (Don't let our cases scare you -- extenuating circumstances.)

What dosage are you on? Sometimes docs. increase the dosage if the lower one is not working as well as it did. You can still have symptoms while on Vanco., however, but they are usually not as severe.

I read one of your earlier posts where you said you hadn't been on an antibiotic this time. (This, too, can occur, but it is rare.) One of our posters never did know what caused her C. diff. - hadn't taken antibiotics for years. In an earlier post, you mentioned taking magnesium. It can have a laxative effect but don't think it would be "long lasting."

I understand your panic well as will everyone else on the site. I am sure you will receive many posts reassuring you. Have you called your doc.? Are you going to either a GI or an ID? Is he/she familar with relapsing/recurrent C. diff.?

Don't panic. There are other treatments "out there" now. You wil eventually recover, but it is one scary disease for some of us.

We know what you are going through! Hang in there!

[Nancy1]

Sometimes what you eat can cause problems, even while you are on vanco. Have you added anything new to your diet? I agree with Bobbie, resistance to vanco is very rare, and changing your dosage can help.

As Cindy says, if cdiff had meant to kill us, it would have done so already. Let us know how it goes. Good luck.

[jenkelly15]

Hey I can totally relate to your fears about dying. I am only 28 and was literally thinking I was going to die from this disease my GI doctor actually told me I was basically crazy and should talk to someone because why would I even go there. Well I went there because I was not getting rid of it and thought I never would, but look now it's been 8 weeks off the vanco and I just tested negative and haven't had any serious symptoms although I am super paranoid if i go twice I think I am on the verge of relapsing. Either way you will not die from this and I really believe eventually it will go away. Plus, the vanoc HOPEFULLY worked for me still won't say it did to nervous, but I had quite a few bad days when I was on the vanoc. So I REALLY do not think you are building up a resistance to it. Many people that I have talked to on here have said the same thing that they have bad days on the vanco. I hope you get better soon and this round will work for you.

[musicgirl180]

Thank you all for the reply and reassurance. My GI said there wasn't much more he could do- I was failing fast on the 125mg of Vanco. He wanted to give me a antispasmotic. There's D and then there's C-Diff D with it"s wierdness and smell (sorry). It was getting bad, fever was back and he wasn't offering much.

My infectous Disease doctor put me back up to 250 4 times daily- you were right about the increased dose. I notice that even after 5 hours passes- before taking another pill...my stomach gets that weird butterfly feeling i associate with c-diff. Do you all have that feeling? One more question that may help me: Has anyone here had muscle spasms or trembling from vanco? i also get vivid violent nightmares.

When you say some of you have been on vanco for many years, is it because you continue to relapse?

I'm used to dealing with the back and forth of the of symptoms while on meds--but I've never relapsed while still taking the vanco...

[diane]

I was on vanco for 3 years.. I had it really bad and there were times on the vanco that I would have to go back up because I would relapse. Have you tried any probiotics or anything else? I did reuteri for awhile and it helped. I was eventually after several tries of pulsing and tapering able to pulse off and have been off for a year!!! It was along road but it will get better and will go away... I'm proof along with several others who are now c diff free. Be positive it will go away and you will be well

[musicgirl180]

thank you thank you thank you. Diane for sharing.

i'm sitting here scouring the posts trying to find someone who relapsed while on vanco.

i am on saccro B, culterlle and occassionally toss in other probiotics for good meassure. i was doing better on 250 mgs 4 x daily and then went ot the standard dose a few weeks ago-that's when the relapse started.

i went up to the 250 4 x daily again yesterday. i feel a little bit better-still worried about what it means to have failed on the 125 mgs. i'm starting to wonder about the infusions-but most of the posts are pre-2008. Hmmm.

i am also considering taking a bismuth/ bentanite clay mixture. i am going to see a stuart johnson--heard he's a top doctor in the field. i think he's doing the PAR study-not sure if that's the right name of the new antibiotic being studied.

i thank you for sharing your expertise. how do you feel these days?

[carrie]

Interesting about the dreams. Before c-diff I never remembered any dreams I may of had and the ones I did remeber were usually about doing something fun. During c-diff I had vivid nightmares, awful things happened during them, it was very frightening but I had taken a very light sleeping aid for a few months during that time and figured it was a result of the meds.

[ClDif]

Musicgirl, have you been on flagyl or has anyone considered putting you on rifaximin?? This does work too for C diff. Has caused relapses too for people on the site, but if vanco isn't helping, your doc should change the approach. In serious cases, IV metronidazole and oral vanco are sometimes combined too...

[cindym]

Musicgirl- Take it from a long-term sufferer- I imagine your problem is the dosage is not enough to keep you in check. In the beginning 125mg would not do anything and at times seemed to actually make me have more symptoms. They increased it to 250mg 4X per day and it still took about 3 weeks to bring it under control. I stayed at 250 X 4 for a long time and gradually went down to 3 per day and now at 2 per day. I still experience times that I have to up the dosage for 4-5 days and then back it down again.

If you are drinking any acidic drink (lemonade, etc) or carbonated drinks of any kind I would stop them immediately as they can make you not respond to the vanco or at least seem like it. Also salads or raw veggies can play havoc on your GI tract. Probiotics (if you are taking them) can also make you appear to be worse with great frequency.

IF CDIFF WANTED TO KILL YOU-------YOU WOULD NOT BE POSTING NOW as you would be dead. If it is going to kill you it does it quickly! Just calm down and try to note what you are eating and drinking and see if eliminating any of it will help. Most likely you just need increased vanco to get you in check. Of course, listen to your doctor and okay it through him.

[WOWOWOW]

I was having relapse symptoms and went cold turkey from the probiotics in preperation for more Vanco treatment. Just like that symptoms diminished and now 5 weeks later I haven't looked back!!

[marscan]

gotta agree with WOWOWOW (omg that name still cracks me up) and Cindy. I had to stop drinking orange juice, and also went cold turkey off of the probies - noticed a change immediately. Hang in there, and best of luck in your healing....

[whitepine]

Hi everybody...

just wanted to check in.
I am also a long term sufferer. Just had a scare too. I am pretty sure I have a bladder infection(waiting for lab cultures to come back) I refuse to take Cipro for it rgardless. In the meantime I took 2 Uristat pills and drank 1/2 quart of pure cranberry juice. The next day I had horrible "D" and the worst cramps I have had in a year.

I panicked, of course, did 2 c.diff samples, both negative, but I am still on vanco, so who knows, just went up from 250 mg Vanco once daily which I have been on for 3 months, back to 250 mg 2x per day.

You think the fruit juice did it?
I never can digest fruit or juice...but ooooo those cramps... 3 days later, I took Immodium, and now I am super nauseated.

Maybe the Uristat did it, it's not an antibiotics but jeeez, such a sensitive tummy! Nasty nasty flare!

Crossing fingers.... hugs to all of you! :)

[nsewell]

juices especially cranberry juice makes me sick. as for th uti try macrobid or sulfur. see what your doctor says.

[Bobbie]

whitepine,
If you do have a UTI & E. Coli is involved, ask for Macrobid as it usually works for E Coli infections & is supposed to be a "safe" antibiotic. (See FAQ-Antibiotics.) I have frequent UTI's (plus "maybe" IC) & am on a maintenance dose of 50 mg. Macrobid (generic) a day. Don't like it, but so far, so good.

Cranberry juice is supposed to be good for UTI's, but maybe you overdid it. Some have a problem with fruits with C. diff. See FAQ-UTI's for more "tips." Some people swear by D. Mannose. Think info. on it is in FAQ. No time to check -leaving house to see my mother.

Just what you needed -- another problem. So sorry. Know how you feel.