ok, this story isn't going to make any sense - I just can't seem to make sense right now... but here goes:
I have always famously had this pain in my gut, under the left ribcage - feels like a very painful gut spasm, a very tight like a fist is squeezing my gut. Left side, under the ribcage.
Because of this pain I could never handle antibiotics. Whatever antibiotic I'd take would make the pain worse. I would literally tell my LLMDs that when I take antibiotics it felt like I was just pouring gasoline on fire in there... at first I thought herx, but it wasn't - it wouldn't ever get better.
So, many years later, after failing attempted treatment with Dr. H on Long Island, Dr. R in Manhattan, and several other less well known docs... the only relief I ever got, curiously was when I took about 4 months of Tinidazole (like Flagyl) and Welchol (Welchol is cholestyramine). I felt great those 4 months... but would relapse to feeling lousy as soon as I stopped the Tinidazole...
So I had resigned myself to being a Lymie who couldn't take antibiotics and would just have to life with the Lyme somehow...
Then, I went to Dr. H in NY. They put me on Cowden, and I took it faithfully for a few weeks, had increased gut pain but not too too awful, and then bam! I get blindsided with the worst diarrhea...
I stopped the diarrhea by taking more Tinidazole, go back on Cowden... and wham, it happens again. Only this time it's so bad I end up in the E.R...
E.R. tests and finds me positive for c. diff!
Wow... I'm thinking... could I have had some kind of persistent c. diff all this time? (I was shocked to learn that Tinidazole (same thing as Flagyl) and Welchol are prime treatments for c. diff!)
Is it possible? All these years that gut pain that got worse on abx and better on Tinidazole was some kind of nasty, chronic c. diff?
And to make matters worse, the hospital only gave me 10 days of Vanco.
I'm now running a fever, have severe pain in my gut, nausea, some vomiting, and they don't want to give me more Vanco before getting another positive c.diff test. I think that's nuts.
I seriously can't get the G.I. doc to treat me. I really try not to be a pain in the butt patient, I don't call a lot, I try not to make waves.... I called my local LLMD and he wants to get another test... but I honestly can't take this pain.
What should I do? I've already panicked, now what? I really can't take this kind of gut pain for too long. I feel just a wee suicidal, actually, because this has been going on for months and I've been stuck in bed the whole time. This is just no way to live. Having a pity party now, everyone invited. Any rants are appreciated. Thanks for reading this saga.
Posted by timaca (Member # 6911) on :
If after the 10 days of vanco you are still not well, ask your doctor (any doctor) to write a lab slip to test your stool for C. diff. If it comes back positive again, then you will need to treat it until it is gone.
Once you are C. diff free, you might consider getting tested for enterovirus. See: www.enterovirusfoundation.org for more info.
Good luck beating the C. diff. Most people get over it quite quickly....I had it for 11 long months...
Timaca
Posted by randibear (Member # 11290) on :
you know what, you have articulated what i'm going through...the pain under left rib, the diahrrea when starting antibiotics (like biaxin), nausea after eating.
i've been tested and they said i had it, they put me on flagyl and i got really sick on it. plus flagyl gave me massive yeast.
it seems to be rolllercoaster and i can't get in with a gastro. they seem to have a network here as i went to another doctor and he contacted my gastro and the next visit, he told me to go back to him...rats...
i wish i could help you but i can't even help myself.
Posted by AZURE WISH (Member # 804) on :
I had the same symptoms you have vomiting diarehea and fever.
Make sure you don't dehydrate and keep a check on your fever. My fever went very high. If you need to go to the er.
I am sorry I know how awful c.diff is to expereince. Posted by BorreliaBrain (Member # 7603) on :
But.. but.... c. diff tests are notoriously unreliable... just like Lyme tests. I'm going for one tomorrow - only, it feels so swollen in my large intestine, and my rib-cage gut pain is so flared...
I am honestly at my wit's end w/ this pain (will be hitting the opiates soon, which is bad, b/c they slow your digestive tract way down making c. diff testing harder)
Thanks for chiming in everyone. Timaca, how could it have taken 11 months? What treatment did you take for 11 months? Vanco? How did you know it was gone?
I am going for a retest tomorrow.
Randi, I've had a few G.I workups, and they don't show anything. I've had a capsule endoscopy, regular endoscopy, colonoscopy, CAT scans... the only thing they find is 'some inflammation' in my large intestine. No kidding.... I don't think gastros are very helpful, frankly. Mine won't call me back, but my LLMD is sure taking this much more seriously than that gastro.
It's time for pain meds guys... I - can't - take this anymore...
Posted by AZURE WISH (Member # 804) on :
You are very right about you can test neg for c.diff and still have it.
i was hospitalized with it and at least 2 came out negative before i got a positive.
I was given flagyl (although i know vanco is also used).
Maybe you need a NEW gastro dr. Some gastro drs can be good. I have had some that have definetely helped me.
Posted by WildCondor (Member # 434) on :
You should be treated empirically for c.diff based on your symptoms. You should probably be on Vancomycin, and for a prolonged taper, such as 250 mg 4x a day for 6 weeeks, then taper to 3x per day for 2 weeks, then 125 mg 2x per day for 2 weeks, then one 125 mg per day for 2 weeks, then every other day 1 125 mg.
Get a new GI doc! What did Dr. H say about the Cowden herbs causing a c.diff relapse? Interesting to know since Dr. H said himself that "Cowden herbs do NOT alter gut flora" when they clearly do, and have.
Some c.diff patients need to take Vancomycin long term for many months. I know a girl who has been on it for 6 years. I took Vanco on and off for a year, then relapsed, and another year of it! its a NASTY bug, you have to keep it under control with the meds. You can have relapsing c.diff, because the spores are not killed by antibiotics, very similar to Lyme cysts. I have struggled with c.diff for over 4 years, its a mean beast.
Flagyl/Tinidazole treats c.diff, and the welchol i bet helped stop the diarrhea and bind up some c.diff toxins. I would go back to the ER, demand Vancomycin! The tests are notoriously false negative, especially if you are already on Tinidazole. The stool sample also has to be diarrhea, and tested within one hour of collection or else its trash.
I tried all kinds of things to get over the C. diff. High dose vanco, tapered vanco, pulsed vanco. I never tried flagyl, however. What finally kicked it in me was the "Rifaximin chaser." Which was 2 weeks of vanco, followed by 2 weeks of rifaximin.
Timaca
Posted by hoot (Member # 19281) on :
Some naturals to try that helped my son get rid of C. diff quickly!
Cultrelle (a probiotic) 6-8 per day--away from food and antibiotics
AFP Peptizyde (an enzyme that digests proteins) with Lauricidin on an empty stomach
Olive leaf extract and green tea extract with food.
Jen
Posted by randibear (Member # 11290) on :
we must have the same gastro!! i've been trying for two bloody months to get in. i've left messages by the ton, nobody calls me back.
when i went to another gastro, he wouldn't treat me because i've been going to this other one so long. he told me i had IBS and go back to number one jerk.
have you had pancreas looked at?
tests? let's talk tests -- colonscopy, barium enema, ct scan, x-rays, fat fecal, tons of blood, upper and lower gi series, stomach ct scan, mri's out the yingyang, colon, stomach, liver biopsies (which showed fatty liver)....there's nothing left TO test...
all negative.
[ 04-08-2009, 10:06 AM: Message edited by: randibear ]
Posted by BorreliaBrain (Member # 7603) on :
These are awesome suggestions everyone. I love this board. I don't hang out here enough...
Pain... Azure, Ms.Condor, Timaca, Hoot, Randi, anyone... did you all notice extreme G.I. pain with your c.diff? Esp. upper left under the ribcage gut pain? Feeling like a spasm? I have had this symptom soooo long, way before any antibiotics or Cowden herbs...
Could I possibly have had this for years?
I will take the Rifaxamin chaser protocol to my LLMD tomorrow - thanks. I hope I get to try that asap.
Wild, awesome article, thanks! Great info. Am printing it out now.
I will also be buying Cultrelle, AFP Peptizyde, Lauricidin, OLE immediately. I'll do anything at this point (even contemplating fecal donor - ewwwwwwwwww)
Wild, I am not overly defensive of Dr. H and his herbs, I just started them... but, I don't know for sure that it was my flora it messed up... I've had this pain, all these symptoms minus the diarhea, actually, for years... I think, though not sure - that with me it's like playing 'whack-a-mole' when one infection goes down, another pops up, ya know?
I am really kinda hoping that it has been c. diff all these years messing up my gut, and that i can get rid of it...
it was amazing for me to hear a G.I. doc in the hospital that is in the heart of Lyme denial look me dead in the eye and say: "you may find yourself all of sudden unable to eat carbs and dairy and sugar"! No Cr#p! (pun intended). I could never eat those things since getting sick.
Is that Lyme, or c.diff.... this is really, really weird... and its really, really painful, too. ouch.
Posted by Nancy2 (Member # 95) on :
Take Florestor-6 to 8 a day, plus VSL#3 and perhaps Theralac. Should do the trick!
Nancy
Posted by randibear (Member # 11290) on :
yes, i've gotten that pain on and off. mostly it stays about a 3-4 level all the time. never stops.
in fact, i sleep with my hand under my left breast because it hurts so.
i'd really have that pancreas looked at.
Posted by heiwalove (Member # 6467) on :
go to the cdiff website wild condor linked to and find a gastro doctor who specializes in c diff; most of them are willing to diagnose/treat clinically. i had c diff or something very similar to it last year, and i wasn't even on abx at the time. a tapered course of vanco seemed to kick it.
Posted by tcw (Member # 15698) on :
Did the GI doc find any evidence of pseudomembranous colitis? Even if you kick the C. difficile infection, the damage done will remain for a while.
VSL#3 DS and Saccharomyces boulardii can both provide some competition for C. difficile in the GI tract, that will not kill off the C. diff, but may help control it a bit.
The cholestyramine binds the C. diff toxins so they do not do as much damage, but again it does not kill it.
I agree you need a new, better GI doc - one that can tell you if you have a compromised intestinal wall and is willing to treat C. diff more aggressively.
Posted by BorreliaBrain (Member # 7603) on :
No, twc, though they only did a sphigmoidoscopy in the hospital, she saw no pseudomembranes... I will have a full colonoscopy on Friday.
Anyone want to suggest a lab I can have him send samples to to look for other stuff like bart, ehrlichia, Bb?
oh man. went and retested for c.diff today, now off to see my LLMD today too. I cannot live without opiates now. I don't care if I get hooked. When the pain settles down, I'll go for addiction treatment. Till then forget it, it hurts too much...
Posted by randibear (Member # 11290) on :
do you have any dicyclomine on hand? my primary gave it to me for intestional spasms and it seems to help a little. he also gave me soma, a muscle relaxer, which makes you sleep a little better.
also, go onto a web board called ibsgroup.org. tons of information and they have some doctors and nurses who post there too. they might be able to help.
Posted by timaca (Member # 6911) on :
Hi Bb~
Since your GI pain preceded your C. diff, you might want to get checked out for enterovirus. You can send tissue samples to a doctor in CA, Dr. Chia.
Best, Timaca
Posted by Vermont_Lymie (Member # 9780) on :
quote:Originally posted by Nancy2: Take Florestor-6 to 8 a day, plus VSL#3 and perhaps Theralac. Should do the trick!
Yes, that will really help to get rid of c. diff.!
Posted by BorreliaBrain (Member # 7603) on :
Ok. On 250 mg Vanco 4x/day and feeling much better - much better - but not 'cured' of gut pain... it's interesting. Also, my knee blew up a few days ago, before the Vanco, when I was feeling at my worst.
So, I'm guessing this is a Lyme flare as well as c. diff. Not sure how to handle both at once, since antibiotics would be a no no from now on...
However, it sure is a relief to be on this Vanco. I feel a lot less desperately ill, a lot of relief. Feels good...
Posted by FuzzySlippers (Member # 13658) on :
I'm so sorry you're going through this. C.Diff can feel horrifying. That's how I described it anyway to my docs. There have been quite a number of times during this Lyme ordeal where I truly felt like I was going to die -- C.Diff was one of those times.
I haven't read all the responses in this thread so I don't know if I am repeating what might have been posted to you, BorreliaBrain. And forgive me if this post is too long.
C. Diff can cause severe, intense, profuse body pain. I don't know whether that's a consequence of the dehydration and malabsorption that goes with C.Diff or a consequence of the pathogen directly itself.
Vanco worked really well for me. I had severe, emergency-type C.Diff situations twice. Once before Lyme was diagnosed (I had Lyme but hadn't been diagnosed yet) and then another time many months after being on treatment for Lyme/Co's.
I had to go off Lyme treatment for the month I was doing C.Diff treatment. Then once we were sure the C.Diff was taken care of we slowly added back the Lyme treatment. And if you need C.Diff treatment for a long time, it is possible to treat for both Lyme and C.Diff. It would just take the help of your LLMD to do that.
Other things that made a huge difference for me was increasing my doses of the probiotic Saccharomyces Boullardii. Since this is a beneficial, non-pathogenic yeast strain probiotic, it needs to be taken away from any antifungals one might be taking.
But it can be taken with food and with antibiotics. Florastor is one brand. But if lactose is an issue for you, you can look into the brand by Pure Encapsulations, which is lactose free. I increased my doses of this to 4-6 capsules a day. That just seems to be what my body requires right now.
Saccharomyces Boullardii is essential in keeping C.Diff under control and at bay.
Two other probiotics were instrumental in me getting a handle on the C.Diff as well.
VSL #3. I use the capsule form of this in high doses. I started out with this as a low dose to let my body adjust and every 3-4 days I increased by one capsule. I'm taking between 6-8 capsules a day.
Del-Immune V. I take doses on the higher end of this as well. It was recommended by my LLMD and it is supposed to also help raise NK cell activity in Lyme patients.
I still take these probiotics and they continue to help.
My LLMD also had me take pure L-Glutamine powder mixed with some water every day. Not everyone can tolerate Glutamine as a supplement. Some folks find that it causes excitability or increases neuro symptoms.
Turns out I benefited greatly from this. He had me taking 10-14 grams of this a day initially during Vanco treatment for C.Diff. That is a really high dose and I probably wouldn't recommend that high of a dose to someone unless they checked with their LLMD.
L-Glutamine can help heal the intestinal walls and heal gut permeability very quickly.
Another thing I was placed on was IGG Powder from Xymogen. This product is designed to increase the immunological response in the gut.
Another product I was placed on was called Endefen by Metagenics. It's designed to do pretty much to same as the IGG powder, but it also helps decrease inflammation in the gut and heal the walls of the intestines which get really damaged with C.Diff.
What helped me the most was 3 weeks of Vanco treatment and the probiotics I mentioned.
Finally, two doctors and a nurse at the hospital told me to be sure to completely disinfect all bathrooms in my home. Clorox bleach is the only thing that kills C.Diff. C.Diff can live on surfaces for months so it's important to be vigilant with cleaning while you're infected and to avoid re-infection.
Use a new sponge each time you clean. I have to use a mask because the Clorox Clean-up and Clorox Wipes I use make me feel gross even when I ventilate the area. Be sure to let the cleaning products sit on surfaces for around 5 minutes then rinse.
This cleaning business might sound obsessive, but further reading on disinfecting for C.Diff patients confirmed what those medical professionals told me.
Glad to hear you are feeling better!
Posted by WildCondor (Member # 434) on :
Fuzzy slippers is right! Keep up the vancomycin and I would do a long taper of it and find a GI that is willing to work with you. Florastor is essential, and don't take any other antibiotics besides Flagyl or vancomycin again, ever. Good thing Flagyl IS used for Lyme, and you can probably get by with the berbs for the rest of it. Clorox is indeed our friend!
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