cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
I feel like I need to post this for those of you who've been asking questions about C. Diff -
I had C. Diff more than once - and was treated successfully finally with a 3 month taper of vancomycin.
After that, I even had several short rounds of abx with no ill effects, in Dec.
(I have been relatively free of Lyme and co symptoms for the last year, so no need for long-term abx treatment in the past year.)
But... even being off of abx at the moment... I have C. Diff again.
No idea as to what precipitated this bout with C. Diff, but let me tell you - you don't want to be here.
Please remember to take your probiotics, your Florastor, and any other preventative measures!
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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posted
Hi, Thanks for the reminder cactus. Too bad about the C. Diff infection--this time off abx?
When is the best time to take Florastor? Just ordered some.
Posts: 182 | From hills and valleys | Registered: Jan 2009
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Sorry you are dealing with it-again. Thanks for the heads up.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Hang in there....
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Sorry to hear it, C.diff has an extremely high relapse rate. Once you get it, you usually have to stop all other antibiotics for life. If you are lucky, you can re-start but you are gambling big time with a very scary infection.
Anyone on antibiotics should always be on Florastor to protect against c.diff. It does not guarantee that you won't get it, but it does help.
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks, all.
WC's article above is a great one - check it out if you haven't.
This relapse took me by surprise as I've been off abx for almost a year except for a short course of zith in Dec.
But... abx or no, there must have been some remaining spores.
Prior to realizing it was C Diff (because of the GI issues) I thought I might be heading into a Lyme relapse... was not feeling well at all.
Now I think it was the beginning of this episode of C. Diff. Ugh.
Feeling better today, with the exception of my insides feeling like they are tried to digest a brillo pad.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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quote:Originally posted by cactus: Feeling better today, with the exception of my insides feeling like they are tried to digest a brillo pad.
well other than that...
wish i had known about this danger before now. i saw where florastor can be bought at cvs. is it expensive?
-------------------- sick since 9-09 igg, 18,23,41 reactive igm, 41 reactive Posts: 436 | From Kansas City | Registered: Jan 2010
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Sorry for the relapse Cactus, Hope you feel better soon.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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WildCondor
Unregistered
posted
Yeah, try a heating pad on your gut Cactus, it helps ease the brillo pad pain. Florastor should help! You can order it online, or ask your pharmacy to order it. Are you back on Vancomycin? If anyone needs c.diff help just ask, I have the instructions for fecal infusions as well.
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lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
C.diff can occur months after abx are stopped. Probiotics and saccharomyces boulardii should be taken all the time.
Also, C.diff is not only caused by abx usage, although it is a main cause. C.diff can be picked up virtually anywhere it is a spore that can be spread by easily and touching anything in public.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
i had c diff two years ago and was not on any abx at the time, hadn't been for years. it was awful. i'm now taking abx again, and so far so good, knock on tons of wood. am taking lots of florastor and vsl 3 to prevent a relapse, and watching like a hawk for potential c diff symptoms, of course.
i hope you feel better soon, cactus. c diff is no joke.
cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Thanks for all the well wishes.
WC, I'm back on Vanco, 3 x daily - it seems to be helping. Also on Florastor and Culturelle (ran out of Theralac, but that's on its way). Thanks very much for the heating pad tip!
JunkYardWily, Florastor is not terribly expensive - I think my latest box was $22.
Canefan, C Diff usually (but not always) causes liquid diarrhea.
However, the liquid diarrhea doesn't happen to everyone - it can also cause soft stools with a terrible, distinctive odor. Abdominal cramping. Nausea. Read WC's article (link above) for more info. She's more articulate than I can be at the moment!
heiwalove, I'm glad you saw this post as I remember we discussed C Diff just prior to your starting abx again. Be careful.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
My son had c-diff twice, once on antibiotics and once off. He hasn't had it in 2 years, he was on orals for nearly 3 years. He's abx free and just turned 15. I hope it lasts.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
drugstore.com is a great place to buy florastor.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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WildCondor
Unregistered
posted
Posting the protocol that I did for those who have been emailing and PM'ing me about the specifics.
When you relapse one or more times, usually a taper protocol is prescribed. Many LLMD's are unaware of the importance of the taper and will only prescribe an additional 2 weeks of Flagyl or Vanco.
Usually it is 6 weeks of 250 mg 3-4x per day of Vancomycin and then a taper schedule as you come off it.
I did something like this...
6 weeks 250 mg Vanco 4x per day 2 weeks 250 mg Vanco 3x per day 2 weeks 250 mg Vanco 2x per day 2 weeks 125 mg Vanco 2x per day 2 weeks 125 mg Vanco 1x per day then 1 125 mg Vanco every other day for 2 weeks finally 1 125 mg per week for one month
That worked for me on my third relapse but i did relapse once again, that time from taking a PPI. Nexium is the most potent and can cause a relapse. The risk is about 3x with a PPI and 2x with a med like Zantac.
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
can diflucan cause c.diff?
i had soft mushy diahhrea with lots of orange mucous and abdominal pain. it stopped but i'm still hurting. it only lasted about 2-3 days.
sort like a lower abdominal burning pain.
i'm getting that pulsing pain after i eat right below my left breast.
scared half to death...
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
There are a few rife frequencies recommended for C diff. I have NO IDEA if they work or not. I have NO experience with C diff.
Rife frequencies in Hertz for C diff:
387 Hertz, 635 Hertz, 673 Hertz
Those are from the CAFL list.
It would be fabulous is someone with C diff got hold of a rife machine, tried these frx, and found that they actually work!
Even if they help a little, it would be useful.
I'm glad i don't have C diff, and you need some more options besides what you;ve got.
---Polly Polygonum -----or Nilufar Knotweed
Posts: 1226 | From USA | Registered: May 2007
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WildCondor
Unregistered
posted
Diflucan does disturb your GI flora so yes it can cause a relapse. It can also cause diarrhea as a drug side effect so it can be hard to tell what is going on. You have to be very careful with whatever you are taking and even the foods you eat and make sure they are antibiotics free and do not disrupt bowel flora.
Another thing, do not mix Diflucan or Nystatin with Florastor or you will just kill it off.
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Marnie
Frequent Contributor (5K+ posts)
Member # 773
posted
Up.
Probiotics always...lots and vary them.
EXTREMELY important.
Posts: 9481 | From Sunshine State | Registered: Mar 2001
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posted
WildCondor, do you mean don't take Nystatin at the same time of day as Florastor, or do you mean don't take Florastor at all if you're on Nystatin?
I'm a little confused. I take doxy twice a day, nystatin once a day. I take probiotics (15 strains) early in the morning. I didn't know about S. boulardii (Forastor) and wonder if I should be adding that as well, or is it pointless with the nystatin?
Thanks for your help.
Edit--never mind, I did a search and found all the answers, thanks. Just a newbie here...
IckyTicky
Frequent Contributor (1K+ posts)
Member # 21466
posted
Where do you guys get your Florastor? Good grief, we can't afford it for all five of us every month!
We do probiotic powder, and Good Belly and yogurt and keifer as much as possible, every day. But thats about it.
-------------------- IGM: 18+, 23+, 30+, 31+++, 34+, 39IND, 41++, 58+++, 66+, 83-93IND IGG: 31+, 39IND, 41+ Also positive for Mycoplasma Pneumoniae and RMSF. Whole family of 5 dx with Lyme. Posts: 1014 | From Texas | Registered: Jul 2009
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
drugstore.com is the best.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I just attended a meeting with many well known LLMDs.
They seemed more challenged by treating C-Diff than Lyme.
One doctor said that she didn't have many patients with C-Diff but the couple cases that she had were not getting better. She said that they were getting ready to do a fecal transplant (if that's what they call it).
I don't know how effective that is but I know it has been done. For most people it's the ewe factor that stops doctors from doing this procedure.
I'm really sorry that you are going though this.
I'm off to get my yogurt and probiotics.
Posts: 2232 | From USA | Registered: Aug 2009
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