Getting worse instead of better

[Jan]

Okay, relapsed, had IV's and it helped, back on vanco but higher dose of 250 3 times daily for 14 days then pulsing this time instead of a taper. Now, I am having more loose b.m.'s and they are gross (yellow & floating). Tons of gas especially during the night while trying to sleep and in the morning. Any one have this happen to them? I am wondering if the vanco isn't strong enough now? I am so confused. My symptoms are different with this bout of C Diff than my first. I think I am going back to my doctor to get an anxiety med again. I took Remeron with my first bout, at least it helped me gain weight back too. Thanks to all who answer.

[Bobbie]

Jan,
Many have similar symtoms with C. diff.

You are on one of the stronger doses of Vanco.

Try GasX. See FAQ-Digestive Complaints.
Stop looking in the toilet. It doesn't help anything & just makes you more anxious.

C. diff. is an anxiety-ridden disease. Check FAQ- Ten Commandments & other posts in FAQ for other ways for ways to cope.

[nsewell]

I had to take the 250's four times a day for quite awhile. If I even missed a dose or went to 3/day things would flare up. Bobbie is right looking in the toilet makes things worse but I know its hard not to. Anxiety is noooo fun. I get it once a months from hormones now. Ive tried evrything and the best for me is 1/2 flexoral. I fell and bruised my kidney and the doc gave me that. I decided to try it when I feel anxious and it actually helps, for now. Hang in there you will beat this..

[klt03301]

Hi Jan. I know how it is when you have such a high level of anxiety. I've recently had to start taking something for mine and I'm 51 days off my vanco. I let the anxiety make me feel worse and slow down my recovery. The meds have helped a great deal; and let me tell you...my doc superdoped me and I can't even take the amount she prescribed, but I'm glad I have it if I need it! I agree with the others, though, about looking in the toilet. I've had the same kind of stool you describe. Don't look unless you know it's D. I've read quite a few of your posts and know you've had a hard time. It truly, truly does get better and I've had days where I never thought it would. It takes patience, which I'm not good at. I've learned that people are always stronger than they think! I'll be thinking of you and you're in my prayers...Karen

[cindym]

It has been my experience (And Dear God I have had plenty of it!) that the higher the dosage of vanco the less color to the stool. ID doc confirmed that to me as well as saying that quick transit through the gut also removes color. I was told to forget what it looked like and never worry unless it was Black as Tar representing blood.

[Jan]

Thanks Cindy, kind of puts my mind at ease. Took about 6 days but the "color" is returning to normal but surely not the texture but then I know while taking vanco, mush is the norm. I'm hanging in there but really leaning towards the fecal infusions that Dr. Aas is doing. 80 patients have been treated using this method with only 3 still positive for C Diff out of the 80. Sounds like good odds but I just hate the thought of driving from PA to MN. Around 1,000 miles from our home, a 2 day trip. Can't fly out due to my daughter being disabled, too hard to get her on a plane with the wheel chair then renting an accessible van cost mucho dollars! They really know how to sock it to the disabled these days. While in Florida and this was years and years ago, we flew, rented a van and it cost us $800.00 for a week. Absolutely ridiculous. Well, if I proceed with this, I'll keep all informed in case any one else is seriously thinking of this procedure due to being fed up from being ill from this monster. All I know is my credit card company is going to love me, but what is more important, my health or a few thousand dollars on a credit card??? I have no quality of life any more so I am opting for my health.

[cindym]

I had talked to Dr. Aas several years ago and he agreed he would treat me when my doc was ready. Then he took a leave of absence or quit or something for an extended period of time. My GI contacted the other doctor in his practice that was then doing the procedures and he REFUSED to take me unless I was willing to totally relapse (which I almost died the last time) to give them a positive test result again. I do not produce positives easily and have to be near death to do so. I, nor my doctor are willing to chance that again as it was the brush of death. Therefore MN is totally out of the question for me. What I could not understand is that I have all the documentation needed to prove what I have AND IF I DID decide to go off vanco totally and relapse fully there is no way in HELL I could travel to get to them. Consider yourself lucky if you have been accepted. Possibly if I could reach Dr. Aas again it would be different. He is a very nice man and we talked for a long time. He sent me the study he had done on the infusions and it kinda scared me! I guess I am waiting for the day I become resistant for the darling doctors in my area to decide to get with the program or get the blame for my death. Can you tell I have emotionally come to terms with the beast being my demise?

[fire7163]

Cindy:

Me too... the top research Specialist in the region, recommended by Dr S in Seattle, referred to him by one of the tops GI's in the field, took one look at my history and refused to see me as patient. No reason given, just not interested. I went so far as to write a letter and called him. The only answer was I don't want to see you as a patient, but very interested in my history, and non-typical symptoms. He wanted all of the info for his research but not the responsibilty. It made no sense. The only thing I can figure is maybe he knows someone from my past when I had an incident at a hospital.

Fire

[Jan]

Cindy, Maybe you should get in touch with Dr. Aas again. When I talked to him he never told me that I would have to go off of the vanco before the infusion, but maybe we just haven't gotten to that point yet?? I hope not for I can't see myself getting deathly ill again, having to travel by van over 1000 miles like that. What scared you so much after reading the trial? Did I miss something that I should be concerned about? I thoroughly read it through and I did see 2 people died but there were other circumstances involved. I think if you are a relatively healthy person and having this treatment done shouldn't be a problem. Now I am worried so please post again or pm me with your thoughts. Some way, some how we have to beat this bug. Did you see the post about the vaccine that I posted about a week ago? The problem is it won't be available for over 3 years plus who knows how long it will take the FDA in the US to approve it?? I am not willing to wait that long. Only if I have to and have no choice. Take Care Cindy!

[carrie]

Hey Jan I say go for it. I did the home infusions with guidance from the Australian clinic. I have not had the successes others have had but maybe it will just take more time. Also I was not on the Vanco prior to the infusions and that could impact it significantly. I do remember reading that you go off the Vanco the day before the infusions and then let the human probiotics do there job. I think it is well worth the drive. In the province I live it is the buzz everywhere and it is recignized as a very worthwhile treatment it's just there is controversy about carring out the procedure in hospitals. I'm sure the Ethics boards will be working towards resolution in the future. I think the drive will be well worth it.

[nsewell]

Jan I would also go for it if you feel youre just not gonna beat in on your own. It's worth a shot then. I was gona do it here. I was actually going to a different gi doc here for about 6 months until I was told about another that has done the infusion a few times with all of them successes, so I started seeing him. I just had to do his way of pulsing which I did and felt I still had it so he put me on Xifaxan for 20 days and it did the trick. Otherwise he was gonna do the infusion on me. He wasnt gonna make me get a positive stool, he would of just performed the scope. Cause that is the only way I could get a pos. Good luck with whatever you chose.

Nichole

[nsewell]

Sorry Iwas gonna mention have you tried to pu the dose to four per day? Every 12 hours.

[Jan]

nsewell
I am on my 8th day of vanco at the increased dose of 250 mg. I did the taper before on the 250 and it seemed to have worked but ended up with c diff in Feb once again only 3 months after I stopped the taper, in which I really didn't think I was over it totally but felt good enough to stay off the vanco and try to let the good flora work on it's own. I tried the taper again but it didn't work, relapsed right after my last pill, 4 days out. Now I am willing to try to pulse which I will start in 4 days. 4 days on 2 off etc.... But, if I can get Dr. Aas to do this procedure I think I will go for it. The "ick" factor doesn't bother me one bit since I have been so ill for the last 18 months.
Where is your GI located that was willing to do the infusions? My doc won't consider it because of the legal issues.

Carrie
Dr. Aas secretary talked to me and I told her I was thinking on doing the infusions at home and she told me that it is a 50-50 chance of it working for some times not enough good flora is getting up in to where it needs to go. They actually insert it through a tube down the throat. He feels this is the cleanest method and also gets good flora back in to the intestines. But then since you didn't take vanco right before the infusions is could be why it didn't work. Good luck to you.

I'll keep you all posted under this post, if it gets locked I'll start a new one to let every one know what is happening. Thanks!!!