Immune to Vanco??

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toni
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Immune to Vanco??

Postby toni » Mon Sep 10, 2007 12:09 pm

I have been coming to this site for the past two months and have been suffering with c-diff since the end of May. I am truly at the end of my rope. My life has just been a disaster since I got this thing and it was supposed to be the best time of my life--I gave birth in February. It took the doctors forever to figure out I had C-Diff. A Cat Scan and Endoscopy both came back fine, so the doctors were telling me it was probably just due to my "body changing" after giving birth and "post partum depression." I was in so much pain and knew I wasn't depressed but couldn't convince them. The GI doctor told me that depression can affect the GI tract, which may be true but that was not what was going on w/me. When finally diagnosed I was put on Flagyl which, as was the case with many on this site, made me sicker. I was then put on Vaco but after four days of little improvement the GI doctor told me I should stop all of the meds. I started feeling better but then had a bad relapse and was put on Vanco again. That was at the end of June. I took it every day (250mg x 4) for aroudn 12 days and then was told to take it every other day and then every third day, fourth day and so on until around early August. I was feeling better but never went back to my pre-Cdiff state. I had one mini-relapse and I always had gas, bloating, cramps, at times severe. On August 17 I started feeling lousy again and out of desparation I took matters into my own hands and started following Lauren's pulsing schedule. I started with the 4 days on/2 days off part since I had already been on Vanco for some time. I told my doctor I was doing this and he had no objection. After a lousy weekend (Aug 17-20) which ruined my anniversary plans (I am getting used to C-diff ruining everything as it also ruined my son's christening and other would be happy occassions, not to mention the toll it has taken on my work/career and emotional state), I started feeling better. August 31-Sept 4 were such "good" days that I actually started smiling again. Then on Sept 5. back came the intense cramping, bloating, and urgency. By the weekend, I was sure I was having a full relpase with all of the symptoms except I did not have bad D. It was frequency and urgency more than consistency but I did notice blood in my stool and can't be sure if its from the c-diff or from the anal fissure I also am battling with for some time. As a result, I started the Vanco evey day and started taking 500mg instead of 250mg although my doctor said that studies have shown that after 250mg, there is no effect from taking a higher dose. Who knows. I am so so scared because these recent relapse occured while I was still taking Vanco at a significant level--250mg, 3xday, for 4 days on/2 days off. I also read Dt. Borody's article regarding this thing staying with people "generally for life" and so I have been spending my days just crying from both the pain and the worrying. I know it does no good but I can't stop. The baby just looks at me and it breaks my heart to have him see me that way and my husband is getting so mad at me for not being able to deal with this better. But its been almost 5 months so my hopes are just non-existent. I have been taking probiotics, eating yogurt, and still feel lousy. I can't even enjoy the little time I have with my son on weekends (I work full-time). My plan and desire was always to have another baby very close in age but c-diff has destroyed that plan as well and I feel as if I will never be well again to even think about another. I'm losing faith in everything. I keep thinking that maybe I should have been on the vanco for a longer time at the outset but am unsure. I don't know why I started feeling bad while still on Vanco and am pertrified of going off of it as my doctor has just today suggested. He wants to do another stool test. (Incidentally, it came back negative during my earlier relapse but I had taken Vanco the day before). I hope I am not becoming immune to the Vanco. Is that possible at this stage? Thanks to anyone who reads this. No one but people on this site could understand the misery I am in.

Christina
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Postby Christina » Mon Sep 10, 2007 1:21 pm

Hi Toni and welcome to the site. I am so sorry that you have to deal with this while trying to raise your new baby. Unfortunately, it is a very common situation so I'm hoping others who went through that will post for you as well. There are many.Take your time to read the FAQ's and expert articles which it seems you may have done but if not, go ahead.The more info you are armed with, the better.
Most people do recover quickly from C-diff and only a few of us fortunate ones are left to relapse over and over before C-diff finally gives up. Regardless, it does always give up. It just takes some longer than others.
As fars as becoming immune(resistant) to Vanco, it is almost non existent but very rarely can happen. A lot of us on the site have spent a long time (some years) on Vanco w/out developing resistance so I would not worry about that. Worry about beating this you can get back 100% to your family.You made need a higher dose or longer course of Vanco.Tapers usually last 6 weeks but can be extended for months.This also the same with pulse dosing which you can read about in treatments.The highest dose possible on Vanco is 2,000mg / day. I was on that dose as well as a few others here on the site. You may want to print off some info and give it to your Dr. if need be. If you find him/her unable or unwilling to help you see this through maybe it's time to find a new Dr. This is another common issue with C-diff.
Be positive, stay busy, and keep being persistent. You will win this fight.

I hope you feel better soon.

Christina

toni
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Postby toni » Mon Sep 10, 2007 1:38 pm

Thank you Christina. I appreciate your encouragement. I just feel like this will never go away and will cause problems for me forever. As to the dosing, my doctor initially prescribed 250mg/4x day so that would total to 1000mg/day. The past few days I increased it to 500mg/3x day for a total of 1500. I simply took two of the 250mg pills instead of one. So when you say 2000mg/day is the highest, I think you are referring to taking 500mg/4 x day. Is that correct? Do they make a 500mg pill or did you take two of the 250mg? Also, did taking that much do the trick for you? Thanks again for your response.

Christina
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Postby Christina » Mon Sep 10, 2007 3:22 pm

Yes, I took 2-250's 4 times per day. Hard to swallow but I managed. I would take it for 3 days up to a week after a relapse then drop down to 3-4 per day. It didn't "cure" me though, if you see my case history you will read that. It was able keep my symptoms under control for about 3 weeks and then I'd go back up to 2,000mg and then drop back down. This seems to be the norm with most people. Maybe not on such high doses, though.
Vanco itself can cause just plain old antibiotic associated diarrhea as well so that might be also a possibility and many are left with Post Infectious IBS afterwards which can mimic C-diff quite a bit. I would keep in touch with your Dr.'s and see what they suggest next. Also, if you retest make sure you are off of meds. for about 2 weeks prior in order to not get (hopefully) a false negative test result. It is common to test negative one day and then positive days to weeks later.

Jodie
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Postby Jodie » Mon Sep 10, 2007 9:27 pm

Hi Toni.....I also developed c-diff while preggie and my son (who also had c-diff when born, but got rid of it with one round of Flagyl and Culturelle, thank God) turned 1 last week and I'm still battling.....The first 6 or 7 months i was just like you, miserable, panicky, depressed (still am at times when things get a little freaky and outta control) but you just begin to live with it...I hope you get rid of it quickly and wish you all the best....and stick with this site, it got me thru a lot of difficult times.

Jodie

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Postby Nancy1 » Tue Sep 11, 2007 12:11 pm

toni,
Welcome to the group that no one wants to join. Christina gave you some very good advice. The higher dose of vanco has helped other folks on this site.

Note that when Dr. Borody says that we have cdiff "generally for life," this does NOT mean that we will be sick for life. It means that we will have the spores for life, so we will always need to be careful about taking antibiotics and about hygiene. As Christina said, everyone beats cdiff eventually. You will too. Don't give up hope. You are not alone. I recommend reading the Ten Commandments of Surviving Cdiff (in the FAQ section), especially #7 about never giving up hope. I printed it out and posted it in my kitchen, where I read it every day.

About blood, I always had it with relapses. At first I went to the ER whenever I saw blood, but I finally realized that it was normal for me. Now, even though I've recovered from cdiff, I have an anal fissure. It only acts up when I have bad D, so I don't worry about it. Good luck.

Nan
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Postby Nan » Tue Sep 11, 2007 12:21 pm

Toni,

I just want to add that I too felt that this will never go away. Folks on this wonderful board said that it will give up eventually, but I was so discouraged with each relapse.

I have been dealing with Cdiff for almost 2 years when I had my last relapse (of at least a dozen relapses) last October. At that time I did a few things different. I did up my Vanco to 500 mg/4 times a day, and I did that for a few days before going back to 250 mg/4 day. I added a new probiotic to my regime, VSL#3, which is very expensive, but I thought worth a try. I bought it on line, at their website. I went back on Lauren’s pulse/tapering regimen (again) but this time I extended each time period by up to 6 rounds instead of 3 rounds. I then extended the time frame, very slowly, to up to 10 days off. My last Vanco was in mid August, 10 months after that last relapse. I have no idea if this is the time for me. I have hope, though, and know eventually I will beat this, as you will.

Remember what works for one person, my not work for another, and what did not work last time, my work another time. Hang in there. You will get better.

Bobbie
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Postby Bobbie » Tue Sep 11, 2007 2:15 pm

toni,
Everyone gave you excellent advice. You WILL get over this so don't give up hope, but it can be an awful disease for many of us.

I had C. diff. for 4 yrs. (don't panic -- extenuating circumstances) & was also on IV Vanco. as well as oral (osteomyletis) for 6 to 8 wks. at the same time & didn't develop resistance to Vanco. (During my 2nd bout 2 yrs. later it didn't seem to help, but I had a lot of Vanco.) One of our posters has been on it for 6 yrs. Remember, even while on Vanco., you will have some "off" days.

What finally "cured" me is Dr. Allen's "broth" - see Doctors - Dr. Mark Allen, KC. It didn't work the lst time but did work 3 yrs. later -- & the lst time when I developed C. diff. again.

You & the other posters are right. Test probably negative because you were on Vanco. Best to wait 10 to 14 days off Flagyl or Vanco. See FAQ-Tests.

Numerous women have posted with the same problem you have -- C. diff. after childbirth. They all have recovered. You will, too. I assume you were given antibiotics for strep B or infection after childbirth? If antibiotics were involved in your C. diff., try to stay away from them for as long as possible unles they are absolutely necessary.

So sorry this horrible disease has somewhat spoiled the birth of your baby. And as to your husband!!! Ignore him. Men can be useless unless it is something involving them directly! Too bad he couldn't share your pregnancy, childbirth, & now C. diff.!!!!

diane
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Postby diane » Wed Sep 12, 2007 10:03 pm

Toni,
I too felt like you , I thought I would never get better, I was miserable and depressed. It will go away , it truely will,. I too extended my pulse as did Nan. I had c diff for over 3 years and you eventually and unfortunatly just learn to deal with it and life goes on .. the only difference is you learn where all the bathrooms are when you go somewhere. Maybe try the vanco for a couple days at 500 mg 3 times a day like you were doing and then go to 250 mg 3 times a day for about a month and then go to a slow pulse....( please remember that this is just an idea and not medical advice, you should consult your doctor, this is just what worked for me). It s laurens pulse but 6 times instead of the 3 or 4 .. ( i forgot what she had) I did this till I was at 11 days off and then stopped. It took many months but I am cdiff free finally. I also realized that I could not take vanco 4 times a day it did not work good at 4 times.. I felt better on 3 times a day.I still have some really bad days.. I actually have been going through several bad days in a row that I have to QUICKLY get to a rest room... but I know that it will get better, my body is not cooperating right now.. I know its really hard dealing with your self and a new baby and would not be happy.. please try and be positive and realize it will go away and just wash your hands alot and try to go on and be as normal as possible.. Positive is a good thing when it comes to c diff.. It is hard at times but it will be better.. You have found a perfect place for friends and support here!!!!! Good luck and get better.

toni
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Postby toni » Thu Sep 13, 2007 11:06 am

Thank you all for your words of encouragement. I am just not an optimist to begin with so its even harder for me to think positive. Jodi, I hate to hear that you are going through this too and for so long. I am not far behind you...my son is turning 7 months this month and I can't believe I have spent all of these precious months feeling sick and miserable. I look at my friends who spent the first year of their babys' lives enjoying every minute, going on vacation with them, bonding, and even getting pregnant again and I just cry...not because I am not happy for them b/c I truly am, that's the way it should be. I just wish I got to experience that too. I had a great pregnancy in every way until my due date that is. To give you all the details of what I went through pre-labor would probably bore everyone to death but let me just say that I had to fire my ob-gyn at the very last minute--on my dute date, and find another doctor who would agree to deliver me! (Not easy at that stage in a pregnancy). In short, he was insisting on sending me to the hospital for a c-section just because it was my due date and I had not dialated yet. There was no medical reason for a c-section. I begged him for a reason that made sense but he couldn't give me one. So, with my husband's support, I stuck to my guns and long story short had a perfect vaginal delivery and a perfect baby boy. Since I changed doctors, I had to deliver at a big city hospital instead of the one by my house where I was scheduled to deliver. I'm pretty sure (as is my GI) that I picked up the c-diff at the hospital when I gave birth and it exhibited itself a few months later when I was put on Augmentin for no good reason. Anyway, that's the short version. My husband and I waited 10 years to get pregnant (I went back to school)and I was looking forward to this time so much. I can only pray that I will be well enough to give my son a sibling some day. I'm not getting any younger. Thanks again.

toni
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Postby toni » Thu Sep 13, 2007 11:20 am

I should have added that had I known this is how I'd end up I would have just had the c-section! Isn't that sad.

puremess
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Postby puremess » Thu Sep 13, 2007 8:55 pm

Toni,
I can really understand what you are going through. I like you contracted c-diff in the hospital when delivering my daughter. Six weeks after she was born I became sick. I had c-diff for 14 months and I feel like I missed out on bonding with my daughter. I feel like I didn't enjoy enough taking care of her because of feeling sick and depressed all the time. I was able to breastfeed for the first six weeks and managed to freeze milk that lasted for 2 more months. I made the decision not to breastfeed while taking medication. So I was pumping and dumping for seven months hoping that c-diff would go away and I'll be able to breastfeed again. But that day never came so I decided to stop feeding the garbage disposal.
Anyway, it's been almost seven month since my last treatment and although there are many days that are not good at all, my attitude is much better than it was before. Please don't loose hope c-diff will give up and your attitude will improve also.

toni
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Joined: Sun Sep 09, 2007 11:34 am

Postby toni » Fri Sep 14, 2007 11:03 am

Puremess, Sorry to hear about your ordeal. It really sucks. Thank God you are rid of it now. Why are you still having so many bad days? Is it the IBS that many get afterwards that is causing bad days? I was always constipated (a life-long problem) before C-Diff so I can only imagine what is in store for me. For now, I just hope to get rid of this thing. I may be wrong but you sound a little guilt-ridden over the breastfeeding. I only was able to breastfeed for a month and I felt guilty about this and sometimes still do but our kids need us to get strong and healthy more than breast milk or anything else so you made the right decision. I'm sure your daughter did just wonderful on formula. My son is growing big and strong and so I'm begining to think that the whole breastfeeding movement (which I am in no way knocking) is having a bigger impact on mothers than on the children.


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