How I beat CDiff, w/ advice from Johns Hopkins specialist

We spend a lot of time talking about the bad news in this discussion group - here's the spot for the good news. If you've had c-diff and are now well, please tell us about it here.
Bobbie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Bobbie » Mon Jan 19, 2015 5:10 pm

Thx so much for the info. Dr. Bartlett saved my 4 year old son in 1979 with his discovery that oral Vanco was effective for c diff. Before then ir was strictly an IV med. Thank him for me - a late thank you from a grateful mother of a then four year old child who is now 40!

This is a great program to follow. It might not work for all since c diff is such a variable infection but will no doubt help many. Thank you for posting it and glad you are doing well. I will copy it later in CDI so it won't get lost in other posts. The list of antibiocs is particularly helpful.

Thank you for "giving back." We wish more posters would. Blessings back to you.

csnider
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby csnider » Mon Jan 19, 2015 5:35 pm

Bobbie, that is INCREDIBLE to hear how Dr. Bartlett saved your child that many years ago! After I posted this today I decided I will (tonight or tomorrow) email Dr. Bartlett and thank him yet again for all he did... I will be sure to mention "meeting" you in this forum and will pass your gratitude along :)

I definitely wanted to post that list of antibiotics, and it came to mind because I have to get an antibiotic now for a UTI... and that old C. Diff-inspired fear came back to me. But, I checked online and the Bactrim the doc prescribed is a Sulfonamide, which, according to Bartlett's list, is on the "Less likely or no chance" list for causing a recurrence. I was thinking how grateful I was to HAVE a list like that, and figured it was my time to "give back."

I also subscribed to this feed, so if anyone has questions, they can ask.
all the best,
CS

roy
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby roy » Mon Jan 19, 2015 7:10 pm

I have made this topic a "sticky" so it will remain at the top of this forum forever!
Its one of the best first posts and amongst the most supportive I have seen!

Thank you

Roy

csnider
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby csnider » Mon Jan 19, 2015 9:31 pm

Hi Roy!
Thanks for doing that! I didn't know how to provide the most visibility for this post, so I'm glad someone else knows how to do that! And most of all I really, truly hope this helps someone else out. It took me many months (and things felt very dark for a while) till I figured some of this stuff out!
Best to you!
--CS

beth22
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby beth22 » Mon Jan 19, 2015 10:51 pm

Cipro and Levaquin are not cephalosporins - they are fluoroquinolones, so when you post this on stick, add Cipro and Levaquin to the high risk group.

Thanks so much for writing this all down. It's a good reference to have.

csnider
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby csnider » Mon Jan 19, 2015 11:03 pm

You're right Beth! Cipro and Levaquin are very dangerous when it comes to C Diff risk and they are Fluoroquinolones, not Cephalosporines. Thanks! I'll edit my original post to make the change!

AllisS
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby AllisS » Tue Jan 20, 2015 2:40 am

A wide-spectrum antibiotic -- i.e., one in the dangerous category -- evidently is sometimes needed to prevent or treat an infection that is or could become life-threatening, whereas a safe or lower-risk one wouldn't be adequate. Still, always a good idea to ask if a safe/lower-risk antibiotic can be substituted.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

pinkangel
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby pinkangel » Wed Jan 21, 2015 5:47 pm

What a great doctor you have! Glad to hear of doctors so knowledgeable in treating this disease. I have a question. When you took the Vanco you said every 2 hours. Is that correct? How did that taper work?

roy
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby roy » Wed Jan 21, 2015 5:59 pm

I think the poster meant every 12 hours not 2

csnider
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby csnider » Wed Jan 21, 2015 6:39 pm

Oh my! So sorry! Yes I did mean every 12 hours. I will change that in my post. And yes the taper was what eventually allowed me to overcome the C Diff. It works because it doesn't just stop the medicine at a given date, but lessens the amount of medication you're getting, then attacks any C Diff bacteria that develop by pounding it with a harder dose. And your body doesn't have to recover from going "all medicine all the time" to "no medicine" so suddenly.

That's not scientific, but that's how I understood the taper to work, vs. taking medicine all one dose for a set of a few weeks.

Bobbie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Bobbie » Thu Jan 22, 2015 4:02 pm

Thanks for info. We made your story an announcement in both Success Stories and General Discussion thus ensuring it will stay at the top of the forum and not be lost. I copied the antibiotic information in "CDI - Antibiotics." Unlike the other forums, the newest information is last.

We wish more posters were like you and "give back."

happygolucky
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby happygolucky » Tue Feb 03, 2015 1:58 am

Hi....I have c-diff right now and docs tell me I got it after my anterior cervical disectomy for c3-c4 when I got antibiotic in the hospital in dec. 2013. About 1 month later, I was moving my bowels too many times a day and didn't feel well all the time. This went on for 6 months in fighting for my life. Things seemed to get better where I was able to eat anything and everything I wanted and started to gain weight aside for the fact I knew something was wrong because of the severe constipation. My daughter then had a baby shower and I had 5 pinio grigio's and I have pernicious anemia. That night I was vomiting and the bowel movements started again and was extremely ill. I was diagnosed with pancreatitis and then 2 weeks later would get another attack and then another and then another and the multiple bowel movements on and off. My gastro did not take the time to test my stool and so she sent me to another doctor for a 2nd opinion which he did test my stool and it came out positive for the c-diff. A doctor Miller with LIJ treated me for 14 days with Flagyl of which I was extremely sick and it was giving me neuropathy. I took all but the last pill because I thought that medication would finish me off for good. I went to see the doctor and I was stuttering, my blood pressure was 130/80 and I was breathing heavy and was confused mentally and couldn't talk to answer questions because I could think. They called an ambulance for me and because they didn't give me anything to eat all day and I couldn't produce stool they could test for the c-diff, they didn't keep me and sent me home (even the ER doc didn't believe I had it because he said I would be going to the bathroom constantly which is not the case with some people). Then my regular doc put me on the Vanco 125 mg 4 times a day for 10 days and I really felt fine with the med and didn't have much side affects at all. The only problem it wasn't long enough and I was good for 1 day and then regressed. I had to wait another 2 weeks because it was Christmas time to get any meds at all. On Jan 1, I took my stool to my regular doctor and he tested it again and again it came out positive for the c-diff. He then gave me a script for 250 mg of vanco 4 times a day. After 6 days of taking it, I didn't feel so well and sick everyday. I get ringing in my ears and headaches and still get frequent bowel movements and passing gas a lot. I can hardly eat any foods. I just recently started to get nose bleeds every day when I blow my nose into a napkin today it had quite a bid of blood although my nose was not dripping. I went to see the doctor and he thinks I am vitamin K deficient so he took my blood. He wants me to see an ENT also and I don't how this doctor will help me. I told the doctor that vancomycin can cause nose bleeds after taking it for a month and a study shows people age 50-59 years of age that took it, 20% of them got nose bleeds. He said that is very possible. I told him when I was on the 125mg of vanco I felt much better. I also told him I didn't think the vanco was working for me because I am having trouble eating foods aside from chicken, white rice, baked potato, only water to drink, florastor, drink silk almond milk with rice crispies and banana and 1/2 hour later have to move my bowels. I can't seem to eat foods with citric acid or ascorbic acid or even pediatlyte for babies. The next day I start moving my bowels more frequently and start losing weight even more. My muscles are like mush and feel like they are wasting away. My skin is dry, eyes are dry too and get migraines and headaches. I ache all over to the bone. I wish I had an appointment to see this Dr. Bartlett.....maybe he could help me. It pays to see a doctor who is knowledgeable about c-diff otherwise these other doctors don't know what to do.

happygolucky
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby happygolucky » Tue Feb 03, 2015 2:03 am

How long did the doctor keep you on the vanco before he tapered you? I have been on the vanco 250 4 times a day already for 1 month. The noise levels in my ears are terrible and I told the gastro that. She said she is not changing my meds until I go see a dr. Larry Brandt who is called the father of C-diff affiliated with Montefiore hospital in the bronx. I'm supposed to get a call from the secretary but not have gotten one as of yet. Sometimes I feel I can't beat this thing and it is just consuming all of me. :-(

Bobbie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby Bobbie » Fri Feb 06, 2015 12:43 am

Happy go lucky,

We all feel that way. Cdiff can eat up your life if you let it. Dr. Brandt has a great reputation. If his office doesn't call you, call back. "Squeaky wheels get the grease."

janie
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Re: How I beat CDiff, w/ advice from Johns Hopkins specialis

Postby janie » Sat Apr 18, 2015 11:13 am

Thank you!
It's been two years since C. diff for me. I have recovered. Thank God my doctor knew about Florstor. I still take it. I also drink Kefir. I cannot tolerate milk even with Lactaid so Kefir also helps. Thank you for the list of antibiotics. I haven't taken an antibiotic of any kind since C. diff. I have been wondering just what I am going to do if I have something serious enough to require an antibiotic. Thank you so much!


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