Jan's Case History

[Jan]

48 year old, married with a disabled daughter. December 2006 developed a nasty sinus infection. Doctors visit December 15th. Given Augmentin. Woke up that night severely ill and rushed to Emergency Room. Had heart palpatations, pulse rate of 140 and high blood pressure, etc... They sent me home with no explanation. Back to the doctors the next day. Doctor gave me rocephrin through an I.V. telling me it was a wide range antibiotic and will kill what ever was ailing me. Little did I know it was going to become my own nightmare. 4 days of I'V's with rocephrin. Finally I collapsed again, rushed to a different hospital for them to do various procedures and end up telling me I needed a psychristrist!!! They sent me home very ill. Finally at the end of January some one said, let's take a stool sample and it came back positive for C Diff. Admitted to hospital for 4 days with a flagyl I'V. drip and potassium. Sent home (still with the BIG D) and feeling terrible. Put on 34 days of Flagyl (which didn't work) then Vanco with the Flagyl (which really made me ill taking both of them) then finally a GI that told me to stop the Flagyl and just use Vanco. I have had an endoscopy which showed only good results thank goodness, a colonoscopy which also showed good results but.... doctor took a stool sample to have it tested for C Diff and the lab did the wrong test so now I'll never know if it was positive or negative. Had a very serious case of hemmorhoids since C Diff so off to a colon rectal specialist which also after his exam said I had a rectocele. What more could I want?? Just knowing some thing else was wrong with me about sent me over the edge. Had the operation and became deathly ill again to find out C Diff is back. I finished my 3rd round of Vanco April 21st and was doing very well, but now, nauseated all through the day, bathroom trips, etc... Doctor took another stool sample and waiting on the results. I think I already know it will show positive results. I pray day in and day out that some way some how some thing will cure this disease we all have. I don't know if I am going for a full blown relapse or just having a mild relapse but I am definitely afraid of what is going to happen. I have saved 25 Vanco and they are on stand by. I will post again after my test results.
May God be with us all.

[Jan]

Tuesday May 15th had a doctors appt. Told me my C Diff toxin report was negative. For the past 5 days I have had the Big D, back pain, cramps, nausea, and loss of appetite. He is stumped. Did say it could be a false negative and doesn't know whether to treat me again or not. Also said he would give me more vanco if needed and pulse dose although he has never tried this method before. I just don't know what to decide at this point, whether to jump back on the vanco wagon and wait this out. Just afraid it may get worse and end up back in the hospital. I guess time will tell.

[Jan]

Back on vanco 3 x daily, 250 mg. I am feeling better so I know it was C Diff acting up once again. Now I am still beside my self asking, taper? pulse?
why not do both?? So that is what I will do, start with a taper, end with a pulse. Using the clinical program wrote by Seema Maroo and J. Thomas Lamont as follows but I am using 250 dosage, not 125.

125 mg qid for 1 week
125 mg tid for 1 week
125 mg qd for 1 week
125 mg qod for 2 weeks
125 mg q3d for 2 weeks
plus
Florastor 500 mg (2 x 250 mg caps) bid for 30 days started during the last
two weeks of the tapered - pulsed vanco regimen.

I'll keep posting with updates.

[Jan]

Well, took vanco for 6 days and felt good then almost great, then on day 7 I don't know what happened but my body just decided to give out on me.
Very tired, exhausted, achy, just had to lay down all day long. No energy, and think just the day before I was so energetic I was actually able to clean house etc..., now look at me. I decided to take vanco 4 times daily since this has happened to me now. I was using 3 daily, but I thought since I was on vanco 3 times before at a dosage of 4x250 daily that I should use that dosage again instead of a lower dosage. Going to try 10 days of this and pray that I snap out of what ever is happening to me. If things do get better, then I will taper back to 3xdaily, and then continue the slow taper. Bathroom duty is looking better but I just wish my body would cooperate. I had felt like this before when I had active C Diff when not being treated because of no diagnosis. All I can do is hope, wish, pray I do not take any more steps backwards. I need to be "feeling well" soon, my daughters graduation is next week along with her party. God, please don't let me ruin this for her.

[Jan]

My daughters graduation party was a success but I was very ill. Ends up I had a UTI and kidney stone. I have never had a UTI in my life or a kidney stone so I am now blaming C Diff for this problem also. Took Macrobid for 10 days and it kicked the UTI. I am now using Vanco once daily and will continue for 6 more days. Tapering to 1 every other day for the following 2 weeks. I am also using Florastor (2 x's daily), plus Culturelle and Rueteri.
I must say I was a big hesitant of buying another probiotic but so glad I bought the Rueteri. It has helped me regain my appetite and I have actually gained a pound! For those of you who want to eat again and gain weight, do try it. I am amazed how it is helping me. Bathroom trips still on going but becoming less and I am more energetic lately. I pray day in and day out I will continue to heal.

[Jan]

July 24th 2006 and still tapering vanco. I finally had the courage this week to try to taper to 1 vanco every 3 days after using 1 vanco every 2 days for the last 3 weeks. Now after today I am wondering if I made a mistake. Bathroom trips 6 times today. Ugh.... The last 3 weeks I have been very lucky with trips from once to 4 times daily. I don't know if it is some thing I ate or if the C Diff is rearing it's ugly self once again. I am trying not to get discouraged by this and making my self stay calm and not stress. I am a big believer in C Diff living on stress. I am feeling okay, no cramping, no bloating, no pain, just more bathroom trips. When will this ever end???
I am going to try 2 more days of this but if things get worse I think I will increase my dosage back to 1 vanco every 2 days. One good note of progress, since buying and taking the Prima. Rueteri I have increased my appetite, able to eat, and have gained 4 pounds!!! Now that is a plus!
But on the downside, I am afraid to weigh in tomorrow morning since I have been running to the bathroom all day long. Better to stay off the scale now so I don't loose my mind. Still having some cramping in my legs but not as bad as the last couple of months. Right knee joint is still hurting. Never had any problems like this until C Diff. Heart rate still palpitates every so often. C Diff surely does effect every part of the body.
Now if we can only get the doctors to believe us. More to continue.

[Jan]

July 26th....what a nightmare this is. Started the every 3 day protocol with the vanco and let the 3 day rule apply and things have gotten worse. Last night I woke up at 2 a.m. with a rapid heartbeat that would not stop. The rapid heart beat was the first sign of C Diff for me in the early stages. I was up all night not able to go back to sleep. Bathroom trips are worse and I am so confused. I ended up taking another vanco this morning. This will be 2 in a row now. I tried calling an infectious doctor today but he is only in my area on Tuesdays so now I have to wait until next week to even talk to him. I just don't under stand how good I felt for almost 3 weeks using the every other day method, then when I got the nerve to switch to the every 3 days, down the tubes my body has gone. I am going to take an Ambien CR tonight so I can get some sleep. Insomnia goes along with my C Diff nightmare also and when you don't sleep, it's hard to feel better. Will post again later this weekend. Good luck to all with this nasty bug. Any one out there want to pm me please do!!! I need support.

[Jan]

July 28th and I am falling apart. Visited my doctor yesterday who is usually compassionate and understanding. I told him I found a ID Doctor which I would need a refferel for but he just said wait. Told me to start taking a maintanence dose of 1 daily vanco for a month and then we'll talk. I am so not feeling well. In the morning my pulse is recording 127 beats a minute and I am even on Lopressor to stop this. Insomnia is persistant. Batrhoom trips picking up, lost my appetite, loosing weight again etc... Not sleeping is making things a lot worse. I have some Ambien CR samples and I am running out and do not know if I can get any more. I took one last night after I layed in bed until 3a.m. tossing and turning and ended up still not sleeping well and waking up 5 hours later so now I am at wits end. I just want to end this all. I have never been through such an ordeal, and believe me, I know I am not the only one out there going through this but apparently my body and mind isn't strong as it used to be. I am almost to the point of asking God to take me if I can not heal and I know that is so wrong but I can not help the way I feel. I never thought I would end up with these kind of thoughts, when before C Diff, I was such an outgoing, independent, caring person and now look at me. I do not know if menopause is causing some of these symptoms also. My dear daughter, I feel so bad I can not function to take care of her, she is disabled. Her life is now miserable because of me. Dear God, give me the strength to go on, please. I pray for all of us.

[Jan]

July 31st....still not feeling well. Can't sleep and really afraid of becoming Ambien CR dependent I do not like taking it, good for putting me to sleep but next day drugged up feeling.

Called and made an appointment with an Infectious Disease Doctor next Tuesday. I asked his secretary if he is knowledgable in treating recurrent/relapsing C Diff ane she said yes. I am having my records from my pcp sent to them today. I don't know if this doctor can do any thing else to help me but it's worth a try.

[Jan]

August 28th...saw the ID Doctor. He talked to me for 5 minutes, didn't care to hear what I had to say about what I have been through. Told me to stop the vanco and all probiotics except Florastor. I will not be going back to him for I feel a doctor should at least listen to what you have to say. I am still tapering vanco, now down to 1 vanco every 3 days. Actually had to end up taking a prescription for depression because of all of this. I am feeling better now and finally sleeping. Being sleep deprived, stress, and anxiety made my condition a lot worse. This will be the last time I post for a while. I noticed that when I visit this site I become more stressed and have more anxiety. My body both physically and mentally can not cope so I must leave this forum for a while until I feel better, then I promise to visit again and post to my case history to provide my information for those who suffer from this dreadful bug. Going through menopause also while having C Diff doesn't help either.
Thanks to all for those who have replied to me, I really appreciate it.

[Jan]

Well, I am back and have just passed the 90 day mark of being off vanco.
Sorry to say that the Friday after Thanksgiving I developed the Big D once again and now having loose b.m.s once again. I have severe insomnia once again but no nausea yet. Haven't been hungry much, forcing my self to eat. So ....I do not know where I stand. I really don't want to have a sample tested for I really don't want to hear that C Diff is present again. I refuse to go back to my doctor unless I turn very ill so I am going to try to stick this out. The only probitoic I am taking is FLoraster twice daily. No other medicines.

[Jan]

Well, here it is, February 2008, and I am feeling okay except for horrible peri menopausal symptoms now! I feel the C Diff is gone but of course I pray every night that it never comes back. I don't want to jinx myself so I refuse to post a success story until I hit a year free with out it. In November when I had that bout of the big D, it wasn't C Diff glad to say. Got a stool culture done and it was negative for it but positive for another type of bad bacteria which luckily isn't as bad as C Diff and usually tends to go away with in a week, luckily it did. Hard to tell where I picked this bug up. I am an avid hand washer especially before eating but let's face it, if you go out to eat and the people that cook your food and handle it don't wash their hands, they transfer some thing to you so are we ever really safe even though we pride our selves for being so clean??? I guess that is just life and we have to take it as it comes. Either be afraid and hide in a shell or take your chances.
I'll post again down the road. Every one, hang in there. The taper does work along with the Florastor. But one thing I did learn, you must get off the antibiotics to actually get rid of the C Diff. Hugs to all!

[Jan]

Due to horrible menopausal symptoms, I had to have a D & C, hysterosocopy and Novasure Ablation Feb 21st 2008. 5 days later very ill. Symptoms of C Diff. My gynecologist had the understanding not to give me any antibiox. while in surgery since I am sensitive to them and re occuring C Diff. I was told I might of been given ancef prior to surgery. I called for my records today and will hopefully have them next week. Had 4 stool cultures tested and the last one showed positive for both toxins A & B so here I am battling this disease once again. I felt good for 5 months prior to my surgery so either I was given an antibiox or I am colonized with C Diff and will get it through out my life (which is some thing I do not even want to deal with).
So, vanco will be tapered/pulsed once again along with Floraster, P Ruteri, and Culturelle and tons of yogurt. To those of you who must have surgery, I would plead with your surgeon and doctor, no antibox. for look what it has done to me. Good luck to all.