posted
I was just in the hospital for 4.5 days with C. diff. I had been having increasing problems with loose stools and then diarrhea for a month. The last couple of days were terrible.
When I told my LLMD some weeks ago that I had started having loose stools, I was put on S. boulardii and courses of rifaximin and vancocin.
It kept getting worse, so I was referred for an abdominal ultrasound, but by the time it got scheduled and the results came in I was ready for the ER.
I just completed 2.5 months of rocephin (4 g. daily). This is my second round of treating lyme with abx (I 'dropped out' for a year after the first 2.5 years of abx treatment to pursue alternative therapies, with no success).
Even with everything I've gone through with lyme, this is the worst yet. I NEVER want this to happen again, and am feeling somewhat scared off of antibiotics.
I haven't seen my LLMD yet, but wanted to get feedback here on future antibiotic use. I've read some posts in related discussions that say 'not for a long time', or 'only flagyl' or even 'never again'. In my situation, what would you do?
Also, how and when do I rebuild the proper gut flora? I had IV flagyl and levaquin while in the hospital and have 10 days of orals of both yet to go.
Thanks!
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Sorry to hear of your struggles. Can you provide details on what alternative treatments you tried that did not provide benefit? Thanks
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Yes, let us know what you have pursued before and maybe we can make suggestions.
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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WildCondor
Unregistered
posted
Hi there
You cannot take antibiotics anymore, at least most likely not. C.diff colitis is serious and it can get severe if you do not treat it right. I had it and it was worse than Lyme ever was and that is saying a lot. First line treatment for c.diff is usually oral or IV Flagyl for 3 weeks. Relapses are VERY common with c.diff because the bacteria form spores in the GI system. Oral vancomycin is better than flagyl, and its usually taken for 6 weeks. If that fails, tapers are used and if that fails or you have pseudomembranes you must get a fecal transplant.
What did your colonoscopy show? Why did they give you levaquin?
Stick with flagyl and vancomycin(only oral) and possibly xifaxin.
I would not take any other antibiotics for a very long time. if you need to treat Lyme you might have to try herbs or HBOT.
The s.boulardii (Florastor) should be 4x per day and for 2 months after vanco or flagyl. Your gut flora is super disturbed and the only way to get it back is a fecal transplant from a healthy donor, and lots of VSL # 3, theralac, yogurt and no more antibiotics.
This is what I can remember of the alternative treatments I did:
Cranial sacral therapy (8 months) mercury amalgam removal and detox food allergy testing and elimination (gluten, dairy, eggs, soy) ART testing Colored light therapy (just a little) Catsclaw "Dutch" homeopathic lyme protocol multiple other homeopathic remedies bio-identical hormone cream supplements (many!)
Unfortunately, during this time I wasn't able to lessen the amount of pain meds I was taking and I added symptom areas (i.e., joints/tendons that hadn't specifically been painful before). My fatigue also increased.
WildCondor. I read something about fecal transplant. That's for dire cases, right? Thanks for the info re: reflorastation.
I don't know why they gave me levaquin. I went to the hospital right by my house, which is not my LLMDs. The doctor on duty prescribed the flagyl and levaquin. I'll follow up with my LLMD, but I'm wondering if I need to finish the course I'm on??
Ugh. Just when you think things can't get worse
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi monkeyshines
Sorry you have to go threw this Sounds really horrible.
I haven't had c-diff but did trash my GI tract durning treatment a year ago & still haven't been able to get back on abx.
Have been doing rife for the last year only along with many supps. Am hoping this will be enough to keep my lyme & co-infections at bay.
First time in 12 years I have been able to go so long without abx,...so I believe it may be working. I do herx hard after my rife sessions.
Good luck to you & hope you can find something that works,
and hope & pray you can feel better soon
hugs & healing Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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posted
Wow! Just when I was getting psyched up for antibiotics, now I'm scared to death! If C.Diff is worse than Lyme....well, I don't know what I would do.
I've already had horrible problems with my GI track & it took me years to restore. The problems came following antibiotics which trashed my GI.
Maybe some people are more prone than others to get C. Diff.
Oh, my I just thought of something. If you can't take antibiotics for a very, very long time, then what do you do if you get a serious infection requiring antibiotics?
How are you feeling now?
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
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WildCondor
Unregistered
posted
If you get a serious infection requiring antibiotics, you have to go back on oral vancomycin and flagyl at the same time to prevent a relapse of c.diff. It's not a pretty situation. That's why probiotics are so important. The levaquin makes no sense as it can cause c.diff.
Make sure the treatment you got was long enough, and remember any stool test you do for c.diff while on flagyl or canco will be false negative and all samples must be given to the lab within 6 hours and be liquid stool. You also must do 3 in a row 3 different days to avoid the common false negatives.
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bettyg
Unregistered
posted
money, welcome back; so sorry to hear how serious this was for you! i'm glad you posted the alternative therapies you had tried.
i was going to suggestion gluten/casein testing, but looks like you did the elimination diet.
posted
I am not sure what the C. diff is, but I had Chronic Acute Colitis back in 1994 after being treated for years with diverticulitis.
I NOW strongly believe it was caused by Cipro.
I had to have my whole colon removed and have an ileostomy today. It was not a fun operation, and there are some problems with an ostomy also. BUT at least I don't have all that pain to live through every day.
I still can't take most abx. Certainly not for long term. But not for my colon, but rather my stomach becomes too painful.
So I have to go the herb route for Lyme. I can take a little Amoxicillin for a couple of weeks, IF I take it with skim milk and NOT with a meal.
posted
WildCondor, forget to mention I have not had a colonoscopy. Is that standard for C. diff.?
The doc in the hospital asked me whether I'd had one as well because I tested mildly anemic and I told him I had been for a while (I assume the connection is internal bleeding=anemia).
Another FUN test!
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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valymemom
Frequent Contributor (1K+ posts)
Member # 7076
posted
Wild seems to understand the complicaations/pain you are experiencing. I wish I had a suggestion I could make with confidence but I don't.
What does your llmd want to do?
Posts: 1240 | From Centreville,VA | Registered: Mar 2005
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posted
valymom, I haven't talked to my LLMD yet. I left a message that I was in the hospital, but haven't gotten a call back. I need to call today and make sure I can get an appt. very soon. From what WildCondor says, I'm not sure I'm on the right abx. I'm thinking maybe I should see a GI, too?
I'm feeling a bit better, thanks all. Had some rice gruel yesterday and so far have kept it in
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
I think the Allimax company is claiming some success with Clostridium difficile; I have an impression that I may have seen something like that. You might try Allimax --- 100% allicin, a special new garlic extract that doesn't smell. I love it for lyme; it works for me; I have to have it, along with my Biaxin, Plaquenil, Omnicef, Teasel, mushrooms, etc. I take 1800 mgs at a dose. I started with 2 pills, 360 mg, now I do 10 pills at a whop and would do more if weren't so expensive.
Posts: 1226 | From USA | Registered: May 2007
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pamoisondelune
Frequent Contributor (1K+ posts)
Member # 11846
posted
While you were on the Rocephin and the Levaquin, were you taking a lot of acidophilus or probiotics every day, several times a day? That's what I do, and I'd like to know if this system failed or not.
Posts: 1226 | From USA | Registered: May 2007
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I trashed my stomache and got horrible yeast 2 years ago on high dose doxy and then leviquin.
I realized that antibiotics was not the route for me.
I'm not sure what is, but I keep reading and trying things.
Hope it gets better.
Posts: 233 | From United States | Registered: Oct 2006
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WildCondor
Unregistered
posted
Yes, if you are in the hospital for c.diff they usually do a colonoscopy right away to check for pseudomembranes inside your colon. The levaquin makes no sense, and as I said can cause c.diff. So basically you don't know what you have going on in there if you did not get a colonoscopy. I would not see an LLMD about this, see a GI for sure. You cannot take antibiotics (except for Flagyl and oral Vancomycin) for c.diff. If you have active c.diff you cannot risk the serious infection getting worse by trying garlic for it, this is not something to play around with and try herbs. The vancomycin must be strong enough and continued for approx. 6 weeks after an initial bout. Probiotics are good but space them out as far as possible from flagyl or vanco.
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posted
If you take Flagyl along with your antibiotics when treating for Lyme, would the Flagyl help prevent C. Diff.? Or is there still a good chance you could get it?
Posts: 310 | From TN | Registered: Jan 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i am very sorry to hear of your situation. it sounds like you need close monitorin by your gastro doc.
i, too, have almost decided to do no antibiotics. every time i take anything i get severe stomach pain and under both ribs. i can't lay flat nor do i get any sleep.
since i've stopped them the pain under both ribs has eased and my stomach feels better.
i'm still taking theralac and doing a yeast treatment tho.
lyme makes everything so hard.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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I'm progressing, or at least not getting worse. I'm still not having normal stools, but am not going all day, either. I'm continuing a 'low residue' diet (white chicken, potatoes, and rice, some cooked veggies and fruit).
I decided to discontinue the Levaquin and continue with Flagyl. I did have a contrast CT scan of my abdomen in the hospital, but it sounds from what Wild said that a colonoscopy should have been ordered. I've only seen the hospital doc to date, who said I did not need a GI doc, but I'm finally seeing my LLMD on Monday and I'll press the issue there.
I was on multiple high-quality probiotics throughout my abx therapy, as well as before. It's one of the things I've been best about, and I've stayed on them pretty religiously since my earlier 2.5 year round of abx, even during my 1.5 year abx break.
Most recently I had added s. boulardii, but it was probably too late. My LLMD recommended it after I had already started having the GI symptoms. I was taking it three times daily, as well as two other high quality brands of probiotics with multiple different strains.
On Wild's advice I'm going to restart them, as far apart from the Flagyl as I can. I thought it wasn't worth it with the abx, but I'd actually feel better taking probiotics and having some killed off than not at all.
I'll let you know what happens. I've got to kick this!
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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