Diagnosis & Symptoms; Also Recurrent vs Relapsing

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Diagnosis & Symptoms; Also Recurrent vs Relapsing

Postby Bobbie » Fri Nov 25, 2005 2:06 pm

By Allison (205.188.116.197 - 205.188.116.197) on Saturday, March 05, 2005 - 01:53 am:

Susanne,
The cdiff has not colonized the well members of your family.
The cdiff bacteria only colonizes the gut when it has the opportunity to do so, that's why it's called an "opportunistic" pathogen...conditions have to be favorable for the bacteria to grow and reproduce.

Many people (perhaps all) pick up cdiff spores and they just happily coincide along with all the other gut bacterias and do not cause clinical disease. When the environment becomes favorable, (through antibiotic use) the cdiff will THEN colonize and produce the symptoms of disease (toxins), but only in some hosts.

It's still not known with certainty why this happens for some and not others - individual immune gut response, (some folks are slow to make antibodies to the toxins, if at all),any underlying disease, the virulence of the cdiff strain, and prior antibiotic use certainly all play a part.
Being exposed and actually contracting the bacteria is not a guarantee that it will actually cause disease - now or in future. That is one of the reasons why this disease is not reportable to the CDC.

Sounds like you got good information from the CDC doc. I would follow his advice, but don't worry about your other family members. Clean well and keep any sickos away - that's for their protection as well as your family's[i]Allison contributed this info. Thanks, Allison.

By Allison Posted: Wed Nov 09, 2005 7:34 pm This is a fairly new executive summary on cdiff infection.
It contains relevant information about testing, treatment options, and cites a few studies that concluded relapse rates are higher with vanco as opposed to flagyl.

Most importantly, it shows the protocol for when vanco should be used and WHY. For those of you wondering why flagyl, the drug from hell, is still the recommended frontline treatment for cdiff, there's a good outline towards the end of the article explaining why this is important. (Ch IX: Bacterial Resistance Implications)

http://www1.wfubmc.edu/NR/rdonlyres/549 ... /CDiff.pdf
Last edited by Bobbie on Mon May 18, 2015 4:05 pm, edited 15 times in total.
Reason: updating

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Postby Bobbie » Fri Nov 25, 2005 2:07 pm

Allison contributed this. Thanks, Allison. (I love the "bonehead" part.)

Posted: Thu Nov 17, 2005 4:38 am Post subject: Symptoms of C. diff.

Hi,
Normally, probiotics should be taken at a different time than vanco - usually spaced as far apart as possible. But that's only important for those probiotics that contain beneficial BACTERIA (culturelle, acidophilous, etc) Florastor is a non-pathenogenic yeast, so theoretically, the vanco won't kill it off.

Ah, the sleep problem...very common and another one of those things that makes feeling better while undergoing treatment all the more difficult. Nothing like having crashing fatigue and being unable to sleep!

There can be many systemic effects from cdiff, and most do not always signal some other problem, and slowly abate when the cdiff does.
Some common findings:
~Fatigue
~Lack of sleep
~Nausea, lack of appetite (can be severe and also treatment related)
~Chills and hotflashes
~Nightsweats
~Migrating arthralgias (joint pain that moves around)
~Heart palpatations (may be treatment related)
~Prolonged headaches (can also be associated with flagyl therapy)
~Rapid hair loss (usually occurs within 2 -3 months of systemic gut infections and is an immune response to the inflammation)
~Many doctors are boneheads (some don't know that effects from cdiff can be systemic and alarm their patients into thinking something else is drastically wrong...MOST of the time, this is not the case)

No wonder we can be such a mess with this infection!

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Postby Bobbie » Sun Dec 04, 2005 1:41 am

Allison posted this. Thanks, Allison.

By Allison (205.188.116.197 - 205.188.116.197) on Sunday, March 06, 2005 - 06:37 am:


Hi Susanne,

I'll try my best to help with your questions.

Regardless of what particular strain the cdiff is, they all have that unique ability to form vegetative spores and remain for life. All clostridium difficile have this capability, and as far as I know, that is not dependant on strain. Does this happen to everyone with cdiff? Maybe, maybe not - they really don't know. Perhaps those spores that remain are eventually booted out by the immune system, or maybe they periodically hatch and cause subclinical symptoms that are of little importance, or maybe enough of them remain viable to start colonization once again when conditions are favorable.

For those who keep relapsing, it makes sense that there may be remaining spores that hatch and start things all over again. But, there have also been a few (very few) studies that have shown that as many as 30% of folks who relapse have infact been infected with a different strain than the one that caused their disease originally! Hence, there is a difference between truly relapsing disease, and reoccurent disease.

Now, since this new strain has shown an ability to cause disease in higher numbers in a population that the old one normally wouldn't, I suspect you'd like to know if that property alone means it may cause more trouble in future than the old strain does, when antibiotics are needed?
Well, since the new strain is not so dependent on host factors to cause disease, I would think it also may not be so dependant on host immunity to cause relapse. This has yet to be seen, though, because not enough time has elapsed to follow how folks make out years down the road. The "old" cdiff causes problems for some, so I would expect that the "new" strain will as well.

Everyone who has ever had cdiff, old or new strain, is at high risk of getting it again.
If I were you, I would operate under the assumption that you and your daughter are at high risk of cdiff again if you need antibiotics simply because you've had it already, not necessarily because of the strain. Likewise, the rest of your family would still be considered low risk if they don't contract an acute infection.
Actually, this would be a good question for the CDC doc. Ofcourse, the more time than can elapse before anybody takes antibiotics - the better.

The medicine (flagyl or vanco) actually kills the cdiff bacteria and that will keep it from producing the toxins that make us sick. If the bacteria didn't have the ability to form the spores, the treatments would be able to eliminate it entirely from the body, but there is currently no medicine that can kill those damn spores.

Your ace in the hole is that this new strain is still very responsive to treatment with vancomycin, and the acute infection will go away for your daughter, just as it did for you. Of course you will fear antibiotics - my I.D. doc calls it a legitimate, understandable paranoia!

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Postby Bobbie » Sun Dec 04, 2005 1:42 am

For a further explanation of C. diff. and methods of testing for it, read Dr. Borody's article and Tests for C. diff.

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Bristol Stool Scale

Postby Bobbie » Mon Jan 02, 2006 1:17 pm

Fluff posted this.
Posted: Mon Dec 05, 2005 12:37 pm Post subject: Bristol Stool Scale

http://www.aboutconstipation.org/bristol.html

Just thought maybe those who are "uncomfortable" with talking about our bathroom habits, heres a scale that doctors use.

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Postby Bobbie » Sat Jan 07, 2006 4:12 pm

Allison posted this. Thanks, Allison.

Posted: Thu Jan 05, 2006 2:08 am

The immune response to cdiff is governed by the humoral branch of the immune system (Bcell lymphocytes, specifically). It's an antibody response, so it's not cell-mediated.

The proper or "ideal" response is correct and rapid production of antibodies to the cdiff toxins. Both serum and fecal IgG and IgM antibodies can be measured.

A plethora of studies (there are literally hundreds) have concluded that a faulty immune response to the toxins is associated with relapse and/or reoccurence of cdiff disease. While the ability to mount an immune response is not protective against cdiff colonization initially, it is most certainly associated with decreased reoccurence.

BUT, (and this is a big but), note that I said "decreased reoccurence" in the sentence above. In a few of the select studies, some participants who had a very high antibody response relapsed anyway.

So, the overall conclusion from all this is that they really don't know with certainty why relapses happen for some and not for others. It's probably not *all* about the immune response, just as it's not *all* about bacterial imbalance in the gut either.

The widely held view is that relapsing disease probably results from a combination of influencing factors INCLUDING immune response and bacterial dysbiosis, among other factors which are highly individual.

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Postby Bobbie » Wed Jan 18, 2006 12:59 am

Linda contributed the following. Thx., Linda.
angelmom
Posted: Wed Jan 18, 2006 2:35 am
I found a good artocle on c diff
Linda

http://www.aafp.org/afp/20050301/921.html

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Postby Bobbie » Sun Mar 12, 2006 12:15 am

Millie submitted this hyperlink. Thx., Millie.

This is excellent article co-authored by Dr. Clifford McDonald at CDC who is tracking C. diff. in US. It has info. on different forms of severity and treatment and easy-to-understand illustrations re. location of spores in GI tract. It also says (paraphrase), "Alcohol does not kill spores so health care workers should wash their hands with soap and water when dealing with C. diff. patients." Best of all, it is not written in "medicalese" and can be understood by us lowly laypeople.

http://www.cdc.gov/ncidod/dhqp/pdf/infD ... M02_06.pdf

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Postby Bobbie » Thu Mar 30, 2006 1:16 am

Christina posted this. Thx.
christina
Posted: Tue Mar 28, 2006 2:21 pm

I frequently use this sight to read about c-diff. It is a very up to date resource and is continuosly being updated regularly. Some parts of it you do need to pay for and others you don't. I have not paid but used only the free parts.It talks about everything from carrier state to toxins etc..
I thought I'd share it with everyone because it explains evrything.

http://patients.uptodate.com/topic.asp? ... infec/4561

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Postby Bobbie » Sun Apr 02, 2006 2:15 am

Allison posted this. Thx.Allison
Posted: Fri Nov 25, 2005 6:01pm


This is a fairly new executive summary on cdiff infection.
It contains relevant information about testing, treatment options, and cites a few studies that concluded relapse rates are higher with vanco as opposed to flagyl.

Most importantly, it shows the protocol for when vanco should be used and WHY. For those of you wondering why flagyl, the drug from hell, is still the recommended frontline treatment for cdiff, there's a good outline towards the end of the article explaining why this is important. (Ch IX: Bacterial Resistance Implications)

http://www1.wfubmc.edu/NR/rdonlyres/549 ... /CDiff.pdf

Bobbie
Posted: Fri Jan 27, 2006 3:43 pm


Linda posted this. Thx.
http://www.patient.co.uk/showdoc/40000837

Bobbie
Posted: Mon Feb 20, 2006 7:16 pm
Allison posted this. Thx.

Cdiff affects your colon - there is little to no absorption of nutrients done there. Nearly all nutrient absorption is finished in the small bowel. When what's left enters the colon (a liquid slurry of water, waste, bile salts, and acids), the colon reabsorbs the water and salts and propels along what's left - stool.

Nonetheless, some folks do report a malabsorption issue with many diarrheal illnesses - including cdiff. It's thought to have more to do with transit time, meds, and suboptimal diet more than actual colonic inflammation/damage. That's the way my GI explained it, any road.
It may be there are other effects as yet unknown, or unrelated(?) issues altogether (like the gluten factor in Celiacs), that play a role.

Bobbie
Posted: Mon Mar 13, 2006 4:50 am
Millie submitted this hyperlink. Thx., Millie.

This is excellent article co-authored by Dr. Clifford McDonald at CDC who is tracking C. diff. in US. It has info. on different forms of severity and treatment and easy-to-understand illustrations re. location of spores in GI tract. It also says (paraphrase), "Alcohol does not kill spores so health care workers should wash their hands with soap and water when dealing with C. diff. patients." Best of all, it is not written in "medicalese" and can be understood by us lowly laypeople.

http://www.cdc.gov/ncidod/dhqp/pdf/infD ... M02_06.pdf

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Postby Bobbie » Thu Dec 28, 2006 3:23 pm

Allison contributed this. It clears up some of the questions re. C. diff.

sickofdiff,
"yet I read that C -diff is part of normal gut bacteria...so when do we "get" this bug?"
There is a big difference between "getting" or aquiring the bacteria, and actually having it cause infection.
Lots of folks at one time or another, (and certainly most hospital workers) are exposed and probably gaining and losing cdiff on a regular basis. It's ubiquitous, it's everywhere. Once aquired, it is NOT TRUE that everybody continues to harbor the (toxinogenic strains) of bacteria on a sustainable basis. Most folks will "lose" the cdiff....their immune systems boot it out. It's believed that approx. 3 -15% of the healthy population does not lose the bacteria, but continues to harbor it. These folks are carriers. One does not have to exhibit symptoms to be a carrier. Since cdiff is an opportunistic pathogen, it may only "awaken" when conditions are favorable, ie: antibitotic use.

The problem with exposure in hospitals is that is where the highest concentrations of the bacteria are found, ALONG WITH those people most at risk to not be able to "lose" the bacteria before it causes disease (old, sick, immunocompromised, on antibiotics, etc.) Timing is everything....additonal exposure to cdiff while hospitalized increases the disease risk expotentially.

You may read that " the bacteria remains dormant in the colon, generally for life". That means once the bacteria colonizes and causes infection, treatments ensue, the surviving bacteria sporifies, and THEN they may hang out indefinitely waiting for another opportunity to take over. This is another circumstance where carrier status remains sustainable, and is also highly dependent on host defenses.

So sure, you have been exposed to thousands of bugs, but something in your immune system allowed the cdiff this time...it's opportunistic remember.

""I know several healthcare workers who have HIV and they can still work. Isn't HIV worse?""
The pathways for infection are vastly different! HIV is not an easy virus to "get". It involves specific high risk behaviors...blood to blood contact, etc. It cannot be transmitted by casual contact.....but cdiff can.
You could use the same stethoscope on HIV+ patients, and then use it on others without risking transmission. The virus is not transmittable through fomites. Cdiff spores remain viable on fomites for a long time and that is the chief pathway for infection when control guidelines are lax.

"I had assumed that since C-diff is a bacteria, then it should culture out."

The operative word there is "should".
Further clarification:
Cdiff earned it's name, clostridium difficile, because it's very difficult to culture. "difficile" is latin for difficult. So not only is a successful culture hard to come by, most labs don't try for it because just identifying clostridum bacterial growth isn't specific enough to warrant treatment.
There's over 100 different strains of cdiff, many ARE common commensal organisms that don't cause disease because they are non-toxin producing. It may be that is the source in some of the literature for the statement, "Everybody has cdiff". In general, that's probably true, but it's not important - hence the need for tests to identify the toxins.

Because of the rapidly changing epidemiology, sometimes it's important to identify a specific strain of cdiff, and only certain labs can, and will, conduct that testing (CDC). For that, I believe they do need to culture, then replicate by PCR so there is enough DNA available for further testing to hone in on a strain.

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Recurrent vs Relapsing C. diff.

Postby Bobbie » Wed Mar 28, 2007 11:49 am

Allison contributed this info. Thx.

Posted: Mon Mar 26, 2007 10:19 pm

Nancy,

That would be considered relapsing disease if you can't stay off the meds for a reasonable amount of time before symptoms restart. It prolly was never really "gone" in the first place, but just hanging out and gathering steam. It's then usually labeled refractory, or resistant to treatment.
We know relapses can and do occur immediately on up to several months after meds are completed. (Ive read that 90% of relapses occur within 2 weeks, the other 10% after that).

But once an individual has been treated successfully, meaning off all meds for (current thinking is what, 90 days?) then another "relapse" should be labeled recurrent, because the infection cleared initially with no sign of return within that window.

Some people suffer with relapsing disease, but aren't susceptible to recurrent disease down the road. For others, the opposite seems to occur...
I know a cancer patient who "gets" cdiff every round of chemo he receives, takes 7 days of flagyl, (that's right - seven) becomes completely asymptomatic, forgets about it, and then starts all over again with the next round of chemo. He's been through this eight times over forty weeks - gets on the flagyl immediately, doesn't get very sick, and then there's no sign of it until next time. It would be very interesting to see if he's being infected with same or different strains each time, but regardless, his bouts of cdiff are considered recurrent.

In my experience, those who really like to make the distinction and think it's significant are the Infectious Disease docs, which makes sense to me.

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Postby Bobbie » Thu Apr 26, 2007 1:12 pm

Allison contributed this info. Thx.

. . . I don't think Mugyver's doc's statement is really incorrect either...just a too simple explanation for a very complex process.

The way he said it, it sounds like all one needs to have are antibodies to cdiff toxins to keep it from causing disease. It is true as we age, our ability to make antibodies diminishes, our immune regulators - our immune system, simply doesn't work as well as it used to. That's one reason why cdiff disease is far more prevelant in the elderly.
But just having the antibodies around isn't the golden ticket...having them respond properly is.

More is needed to elicit the response. What is the *more*? The *more* is a very important group of indigenous bacteria….the bacteroides.
This group of bacteria (especially b fragilis) is more important to the immune response against cdiff than previously thought.
If you have any remaining bacteroides (after the big “wipe-out” brought on by the offending antibiotic), it may be possible to elicit the proper antibody response as long as those antibodies are present.

But certain antibiotics are way too good at killing some or all species of bacteroides…the cepholosporins, fluoroquinolones, and clindamycin.
Not only that, but there is also the problem of microbial resistance. Dr.Gerding’s research delves into the premise that cdiff is now resistant to these classes of antibiotics in many cases.
So not only have these drugs wiped out natural defenses, but cdiff can now operate in an environment of resistance too! Is it any wonder it’s an ongoing problem in the face of non-judicious use of these antibiotics? It’s like a double whammy, and reflects the current thinking that it is usually not just one factor or the other that causes cdiff. It’s a combination of them.

So what to do about the bacteroides? There are only two ways to re-establish them…through time and normal living, or bacteriotherapy…human fecal transplantation.
Folks who get chronically ill with multiple relapses do not always have the luxury of just waiting for the repopulation…not if their cdiff rages out of control when treatments are stopped. That balancing act may never happen and that’s why bacteriotherapy can be effective.

Heck for all we know, it may turn out to be a combination therapy that’s most effective for the worst cases….like our Christina. (and perhaps not just this particular combination, but the order and timing of them as well)
Fecal transplant to elicit the proper antibody response, and IVIG to add the pooled human antibodies (in the event there are none).

That’s why it’s important for some to be under the care of an actual cdiff expert….those doctors who not only understand the science, but are also willing to put the science to use in their clinical practice.

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Postby Bobbie » Thu May 31, 2007 12:05 pm

Christina contributed this. Thx.

Posted: Wed May 30, 2007 4:57 pm

Here Judy. The first line "What is C-diff" explains percentages. Also, if you read Dr. Borody's article on the site it states c-diff spores have to be acquired via oral route. I believe it's only around 3% of adults who actually carry the bacteria naturally. Hope this helps.

http://healthlink.mcw.edu/article/954992292.html

A good source of info. is also available on Up to Date if your willing to pay for it. I think I pay 45 dollars every three months (can't remember exact $ amount) or so to get the latest professional level up dates on C-diff. I then print out the whole package so I have it for reference if need be.

PS - I also ask my GI Dr. a lot of questions.

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Postby Bobbie » Tue Oct 30, 2007 2:19 pm

I've copied the info. here as a diagnosis can sometimes be confusing: esp. in other conditions might be involved.

Donated by Jennie:

It is the experience of many people who have serious illness, that they get to figure that not only do different doctors have different opinions on any one particular case, but pathologists can have differences of opinion too. What one sees, the other disagrees with, sees something else going on. Many 1000x of times over, most of the time, they will call it exactly, and agree. Other times, surely a lot more rarely, there may be different interpretations.

One of the difficulties of a c.diff diagnosis (because it is a "newer" condition), is in this question of reading of the slides, and in terms of the big picture. It is highly expert, highly specialist.

As we have discussed, with pseudomembranous colitis, usually they can see it, easily. With other kinds of inflammation going on, and a scope on meds, it is, by its nature going to be tough to call.

In many ways, the answers are in the slides. But more than that, having a pathologist and GI read and consult on them, when they themselves have a lot of knowledge of c.diff; and are sensitive to the variations that can happen, on meds, is really quite crucial. That, and looking at the blood markers, the whole picture.

Donated by Christina

Just some things you may want to know or check on your bloods and histology findings. Whether or not you have an IBD only a Dr. can diagnose that.I would have no idea. But here is a fact you should be aware of just in case.

C-diff is the most commonly identified specific pathogen of IBD patients in the US being present in 5-19% of patients with relapsing C-diff. Other pathogens can be involved but C-diff is the #1.

Also, on your blood work they should be checking for a very high WBC count 20,000-90,000 cells/mm3,a decrease in serum albumin, and acute protein losing colopathy. These are all indicators of a C-diff infection. I always asked for copies of my bloods and went over them myself. If I found anything abnormal I called to ask about it.

Also, on histology pseudomambranes can be seen to emanate from a central area of epithelial ulceration thus forming mucosal plaques.In some cases the ulcerations combine w/ overlying pseudo. to cover very large areas of mucosa. Newer lesions are 1-2mm and older or classic lesions are 2mm-10mm. Also, mucosal edema,thumbprinting,thickened colonic wall are also indicators of C-diff or PC. These can often be seen on CT scan or even on colonscopy.If you can or do get copies of your reports, I'd look for these things. Like I said, I always reviewed all of my records and reports.

As far as different opinions everybody has them. I had biopsies in January that the Pathologist diagnosed as microscopic colitis. My Dr. did not agree at all and called it "left over" C-diff. Eventually,it worked itself out.Techinically, I should change the length of my C-diff infection dates but it's not important. Do be aware there are many disagreements even with the best Dr.'s and Pathologists involved.Nobody is perfect and they are all human and make mistakes.It may take time to get the correct diagnosis be patient and persistent until you recover.You'll get there.

Donated by Allison:

If you have failed multiple standard treaments for cdiff and it's established that it's only cdiff that's causing troubles, then it would be wise to consult a cdiff expert, or those docs with experience in treating the most stubborn cases. Since it has not been established that cdiff is your only problem right now, your best bet is to follow your current doctor's advice and treatment protocol....not anyone on the internet (or even a friend who happens to have colitis). Please don't start or stop any medications without your current doctors knowledge.

Yes, over the years we have had site members in your exact situation - where a cdiff infection is clouded by an tentative IBD dx (or a tentative IBD dx getting clouded by cdiff!)
It is also not uncommon for it to take a long time (and alot of testing) to sort out the various etiologies.

Docs in the US do not have their "own" pathologists. Your doc is using the same labs and pathologists as all the other docs in your area. If you want a second or third opinion on the pathology, you would have to contact a teaching hospital or clinic outside of your area and ask if the pathologists they use will review your slides. That will insure an independent review.
In the end, though, it is not the pathologists findings, but doc's interpretation of those findings that is most important for making treatment recommendations. (ie:Christina's experience)

FYI: The inflammation caused by cdiff is sometimes exquisitely sensitive, and thus responsive, to anti-inflammatories (steroidal or non-steroidal). That can cloud the picture even more, and another reason why it takes some time trying various treatments to sort it all out.


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