relapse

[klt03301]

ok guys...just got back from duke er...it's back. was told this is a very complicated bug and very evil. on vanco again will see id very soon and will formulate plan possible taper this time. i am so sick and discouraged. my nerves are shot and cant sleep but am not alloewd any sedative as it slows down the gut. probiotics have not helped but will continue...drink, drink to flush it out. dear God, does this ever end? i am so afraid and exhausted. i was feeling so much better but was still not able to eat much. tried to go w/o nausea meds last time...will be using this time. you are All in my prayers ...i appreciate you guys SO MUCH! Hugs to you all...karen

[Nancy1]

Karen,
I am so sorry that you have relapsed. I know, they are very discouraging. How many relapses is this for you? Yes, this ends. They tell me that everyone beats cdiff eventually. You will too. FYI, I took Klonopin to sleep; my doc didn't say if it slows down the gut. A taper is supposed to have a higher success rate than just stopping vanco. Read the Ten Commandments of Surviving Cdiff, in the FAQ section, especially #7, about never giving up hope. Hugs to you too!

[klt03301]

Hi Nancy. This is my 1st relapse. The duke id put me on 1 month of 125 mg vanco every 6 hours.

I went to my pcp (not affiliated w/Duke) today for blood work. she didn't do it. they tested my stool for blood and white blood cells yesterday...nothing there., though the D had returned along w/nausea and pain. my pcp says she doesn't think i have c diff, or they would have found blood and white blood cells. Essentially, she told me I needed to find another pcp, as she does not agree with vanco treatment over flagyl, says it's not as effective, and that it's dangerous to stay on vanco. she did set me up w/a GI to have sigmoidoscopy. I have to find a new PCP now.

Won't be able to see the ID doc until next week. I have refused the flagyl because it makes me so sick, though the pcp offered my phenergan. well, flagyl makes me have D, too.

I'm heartbroken over the PCP's dismissal of me as her patient of 8 years and broke down in tears in her office. She did say there was a lot of yeast in my stool. I'm on florastor and culturelle.

Still unable to eat. So, now what? I feel as if I'm losing my mind. Can you have C Diff if there is no blood or white blood cells? Had been off my vanco for 10 days when I gave the sample and the symptoms had returned. When the D and other symptoms returned, I knew it had come back. I truly don't know what to do, other than check myself into a psychiatric ward.

[nsewell]

Most normal dose of Vanco is 250 mgs 4/day. It makes you feel alot better than the lower dose.

[labgirl]

So sorry to hear your PCP dropped you. It may be just as well, because it sounds like she doesn't know much about treatment for C diff. Yes, it's possible to have C diff without having blood and white cells in the stool. A while back I sent in a sample for C diff toxin and white cells. Before I sent it off, I took some of that same stool sample and went immediately to one of the labs I visit each month to look for white cells under the scope myself- it was full of them. By the time the other lab got around to reading mine, the white cells had disinigrated and the results showed no white cells. ( I work in a lab so I know what I'm looking at). If you're close enough to Charlotte, I can give you the name of my wonderful ID doctor. I sent you a PM but am not sure it went through.

[Nancy1]

Karen,
I am so sorry that your PCP quit on you. My GI doc quit on me after my 3rd relapse. He didn't even have the guts to tell me, he just stopped returning my phone calls. I had to find another doc, and found a good ID doc. I believe that docs get so frustrated with cdiff that they take it out on us. I surely hope that you can find a better PCP.

I of course am not a doc, but I don't agree with your PCP that vanco is not as effective as Flagyl, nor do I agree that it is dangerous to stay on vanco. Many of us here have taken vanco for months and even years. Flagyl made me so sick that I think I cannot take it again. I don't know about not having cdiff if you don't have blood or white blood cells, but I believe that D is the main indication. You know your own body best, and if you think it is back, it probably is.

Have you tried taking Primadophilus reuteri? It gave me my appetite back, so that eating was no longer a struggle. I ate small meals 6 times a day, and also drank Ensure. You are not losing your mind. Cdiff is a horrid disease and it makes us think we are. Have you thought about taking an antidepressant? Hang in there.

[klt03301]

Hi Nancy and labgirl....Nancy, I sent you a PM...hope you got it. Labgirl, thanks SO much for the info you gave. It helped a great deal! Hope you both are doing well. Thanks again. Karen

[cindym]

Doctors do not like it when you go to others for treatment and most likely you going to Duke instead of calling your PCP made him/her angry. Not all doctors have full understanding of this beast and if that doctor kicked you loose------send them a THANK YOU NOTICE because evidentally they did not know JACK about cdiff and did not want to admit it. Flagyl worsened my condition and in reality made things much worse for me in my initial period of cdiff. If that doctor is not aware of how flagyl can make some people so ill or does not have the compassion to understand you are better off seeking other doctors. Duke is supposedly a well equipped wonderful place. I live in SC and have thought of going there with referral. I found out in the early days of cdiff that finding a doctor who listens is essential in this battle!

[Bobbie]

klt03301,
You aren't alone & don't feel like a "reject" because your regular doc. "dropped you." When my younger son had C. diff. in l979, our ped. of over 13 yrs. dropped my kids as patients. He woudn't listen to me when I asked him not to prescribe Amoxicillin for my son for bronchitis because I said I "had a funny feeling" about it. (Sometimes mother's "funny feelings" are better than a doc.'s 10 min. exam of his/her patients.)

After my son developed severe diarrhea, slept & I couldn't wake him, I took him to the ped. (had to carry him - he was 4), & the ped. said, "Let's wait a couple of days." I knew we didn't have a "couple of days" & called his ped. GI. He told me to take him to U. of NE Med. Center which I did. He was hospitalized for days, in a coma, developed acidosis & probably would have died except the ped. GI had a new associate who had just studied with the doc. (Dr. Bartlett) who discovered oral Vanco. (previously only an IV med.) worked for C. diff. Back then, few docs. knew anything about C. diff. There weren't any support sites. I can't describe what a lonely, horrible experience it was.

My son was given IV Vanco. first -- didn't work. When put on oral Vanoc. (back then they had to convert the IV into oral), he rallied quickly. He did have two relapses & then was OK. The ped. never came to the hospital. I had a h..... of a time finding another ped. for my sons.

Once you have C. diff., many docs. & dentists are reluctant to treat you. I've had C. diff. twice (l993-l997 & again in l999) & had the same experience several times. I called the GI on call one night when I was very illl, & he told me, "If you have chronic C. diff., I can't help you" & hung up. Thank you, Mr. Hippocratic Oath. I found a new GI. Dr. Mark Allen's "broth" method (see Doctors - Dr. Allen, KC) finally "cured" me altho. it didn't work the first time during my first bout.

This is a fairly common story on this site: Doc. dosn't "cure" C. diff., doc. drops you. It can drive you crazy, & you feel alone & isolated. They can make your feel as though it is your fault. Maybe there is a course in medical school called "Making the Patient Feel Guilty l0l."

Find another doc. ASAP & be sure & ask if he/she is knowledgable about C. diff. Don't feel rejected -- feel angry. There are good docs. "out there" who can help you.

[klt03301]

First of all, I want to thank each and everyone of you who has responded to my posts. I saw a GI doc today for the first time and going to have a sigmoidoscopy on Thursday. He said even tho I'm on the vanco, he can tell by my colon and biopsies what is going on. He understood why I'm on the vanco and not the flagyl and was ok with that. I realize I may get a false negative, but I've already had some of those and I will know when it's coming back, trust me.

I really, really liked him. He is the first doc who has been honest with me and the most compassionate. He said there is a resitant strain going around right now in my area (Durham, NC) and when I told him of my experience with the PCP, he told me he understood my feelings and that this can be a devastating illness. What I appreciated the most was when I asked him if I was going to get well, he didn't say "yes", he said, "we're going to try a lot of different things" and it could take a while. He was the first who understood that I cannot eat much and didn't chastise me for not doing so. He didn't reccommend Florastor or Culturelle, which I have been on, but did suggest something else, which I'm going to take. He said the most important thing is to try to ease down from the Vanco and restore my inestinal flora. He won't ease down unless he feels confident I'm ready. Gave me Protonix, but I understand this kills the acid and may contribute to the C Diff not being killed off. Still going to take it, as I have extremely painful acid heartburn and pain under my ribs throughout my back, which makes it hard to breathe. I'm between a rock and a hard place. At some point, as a last resort, and if I can find a doctor in my area who will help me, I will attempt the fecal infusions. I have found a naturopath who treats C Diff, but don't know if he does that and I can't get an appointment with him until July. Just wanted to keep everyone posted. As you all know, there are moments when I feel I'm going to kick it, but many more when all I can do is cry. I got on the scales today and have lost even more weight. Throughout all of this, that has been the most disheartening for me. Trying to hang in there...Karen

[klt03301]

i started having watery D again yesterday with loose the last couple of days. On 125 vanco for one week with no improvement and now getting worse. I had a flex sig today, but the pain and D are so bad...I feel awful. Doc found no colitis, but checking for microscopic colitis. He said it's possible to have raging C Diff and still find no toxins. Don't know what to do, as I haven't been able to eat or sleep for several days now. Has anyone ever heard of C Diff w/o colitis?

[nsewell]

I highly doubt he would see anything unless you were off the vanco for at least 2 weeks. I would also talk to him about upping your dose to the 250 mgs 4/day. ANymore the smaller dose doesnt seem to touch it.

[klt03301]

I've tested negative for both toxins on sigmoidoscopy, neg stool, I've only had one positive test in the very beginning of this in February 2008. Colon is fine; no colitis or microscopic colitis. I was on 125 mg Vanco 4xday when all this was done. Off the vanco since 4/6. Never did feel as good while I was on the Vanco 250 mg in the beginning, and had an appetite. Sine then, gone downhill. I continue to lose weight and unable to eat. I'm going to have IV nutrition today through naturopath I found. I feel like I'm dying. Weigh about 100 pounds now. From 118 on 2/20. I keep testing negative and don't have D...stools are still green, formed, but soft. I get bloated easily, pain all in abdomen wchich keeps me up at night, severe nausea. I'm very weak and live alone. I'm having to go stay with my mother for a while for help with just day to day activities. Can't even cook or clean for myself. Also have a systemic yeast infection, and my gums are bleeding. Naturopath says it is from malnourishment. All my docs say unless they have more concrete evidence I have c diff...no more antibiotics. Can't find anything else wrong with me. I'm hopeless at this point and wake every morning wishing I hadn't. Can you have c diff without D? Thank you in advance for any response. Karen

[nsewell]

Have they ran other tests like blood work and other tests with your stool samples? I would say somethings not right, but I am not a doctor. Usually if your on meds and have a scope or stool sample tested it wont show cdiff you need to be off them for a couple weeks at least. Just keep on your doctors you know your body best. I was the same when I first got cdiff. No change in my stool yet but I have pain and gas that just wouldnt go away and I Knew something was wrong. Finally a few months later they found cdiff. Hang in there..

[ClDif]

Hi Karen,

yes, I do think you can have c diff without showing the obvious signs for quite a while. I think I experienced that too. Wonder if I am now as well. Who knows?

Within 3 days on IV metronidazole (and IV is not supposed to be the most efficient treatment method for c diff) my colon looked 80% better than it had before. Had a colonoscopy before ABs and then after 3 days. So I imagine it is quite possible that yours looks just fine while on Vanco.

But it could of course be something else as well, so try and get checked as thoroughly as possible.

Probably a good idea to live with your mother for a while. Feels less scary when there's someone around. I live on my own as well and I was so grateful to occasionally see a human face at the hospital, after many weeks alone with all the fears and the pain and the sleepless nights. It'll do you good. Will you be doing the IV nutrition regularly now? Probably a good idea, you need to get strength from somewhere.

Hang in there, it will all get better eventually. (Quite desperate myself actually at the moment, so I am saying this to cheer myself up as much as you ;-).