What would you like to see on this site?

That’s the one question I’m asking right now. If we can share with each other what we want to see on this site, we can start giving it (or more of it).

Like you, I’d like to get rid of C Diff forever, but until then I’d like to provide what people want on this site. I started this blog as a way to “vent” but, hundreds of people find it per month and I’d like to give them what they (YOU) want.

You can help by giving just one answer to one question:
What would you like to see on this site?

Brewer’s Yeast (Saccharomyces Cerevisiae) and Florastor (Saccharomyces Boulardii) are not the same organism.  They are both yeasts and have similarities, but they are distinctly different strains within the same species.  There are many studies that show S. Boulardii is beneficial in the treatment of C Diff.  However, there is only anecdotal evidence (not fully reliable) that Brewer’s Yeast is beneficial in treating C Diff.

Until something has been proven to be beneficial in treating C Diff, you have to weigh the possible side effects.  For example, there are cases of fungemia (dangerous fungus infection in the blood) being associated with the use of Brewer’s Yeast (Saccharomyces Cerevisiae). [1]

So, until (or if) we see more evidence, my thought while trying to get rid of C Diff was to use Florastor (Saccharomyces Boulardii) instead.

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[1] Saccharomyces cerevisiae fungemia: an emerging infectious disease.
Munoz P; Bouza E; Cuenca-Estrella M; Eiros JM; Perez MJ; Sanchez-Somolinos M; Rincon C; Hortal J; Pelaez T
Clin Infect Dis 2005 Jun 1;40(11):1625-34. Epub 2005 Apr 25.

I never would have predicted it, but it looks like Splenda/sucralose could be a big no no for anyone worried about C Diff. According to Neo-Paleolithic-Diet.com [1], “How would you like to reduce your normal flora by 50%?” The study sited there suggests that Splenda reduces the amount of “good bacteria” in your gut. The whole problem with C Diff is the overgrowth of bad bacteria killing the good bacteria. So, for me, if there is any chance that Splenda kills my good bacteria, I think I’ll avoid it.

[1] Neo-Paleolithic-Diet.com

Tags: C Diff, Clostridium Difficile, Diet, Splenda Side Effects, Sucralose

There are multiple strains of C Diff floating around our hospitals and this one is pretty scary.  “This NAP1 strain has a genetic change that results in literally 16 to 23 times more toxin,” says William Jarvis, MD according to an excellent recent College of American Pathologists article [1].  In the same article, L. Clifford McDonald, MD confirms that “We’re continuing to see it as the most common single strain in outbreaks in severe cases.”

Luckily, the drug being pursued by Optimer Pharmaceuticals appears it might be able to take combat this strain too.  According to news on Optimers site from March 11, 2009, “…Fidaxomicin produced similar cure rates in patients with the NAP1 strain compared to patients without the hyper-virulent strain.” [2]

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[1] “Glimmers of hope in C. diff testing” article found at: http://www.cap.org/apps/cap.portal?_nfpb=true&cntvwrPtlt_actionOverride=%2Fportlets%2FcontentViewer%2Fshow&_windowLabel=cntvwrPtlt&cntvwrPtlt{actionForm.contentReference}=cap_today%2F0209%2F0209b_glimmers_of_hope.html&_state=maximized&_pageLabel=cntvwr

[2] News from Optimer Pharmaceutical’s site from March 11, 2009:  http://www.optimerpharma.com/news.asp

Tags: Curable, Diffimicin, Fidaxomicin, NAP1, Opt-80, Optimer

It looks like “Fidaxomicin (formerly OPT-80, PAR-101 or Difimicin),” is still looking very promising so be sure to keep searching for its new name, Fidaxomicin. [1]  Again, Fidaxomicin is a new drug soon to complete its last studies before applying for FDA approval.  It has been shown, so far, to a tiny bit more effective than Vancomycin and with a LOWER relapse rate.

The company’s maker, Optimer Pharmaceuticals, sounds very confident of the drug’s future too:  “If the second trial is as successful as the first trial, we intend to use these studies to support the filing of a new drug application, or NDA, for U.S. registration as soon as practical thereafter.” [2]  And I am flat out excited to have a new option for all of us C Diff patients!

References:
[1] http://www.optimerpharma.com/gallery/Corp_Fact_Sheet_1.27.0942992_82.pdf
[2] http://www.optimerpharma.com/pipeline.asp?pipeline=1

Tags: Antibiotics, Difimicin, FDA Approval, Fidaxomicin, Opt-80, Optimer, PAR 101

Off Antibiotics – No More Cramps or Urges

It has been 3 days of not taking the antibiotic now (Azithromycin/Z-Pak).  Within 24 hours of skipping the last dose, and doubling up on the probiotics for a day, I was feeling less cramping and urges that were identical to the prior C Diff bouts I’d had.  The “warning” symptoms have gotten better everday and today I feel almost completely normal.

I still have a minor lingering sinus infection, but no fevers.  Hopefully, the sinus infection will go away on it’s own and I won’t have to worry about getting on antibiotics again!

I will remain on a tapering schedule of the probiotics I mentioned in the first part for a few more weeks.

Convinced I Still Have C Diff

I am convinced that I do have C Diff still even though I didn’t get full blown diarrhea this time, thank God.

First, the cramping and urge feelings were identical to the times I had confirmed C Diff.  They increased with everyday that I was on antibiotics for the sinus infection.

Second, the probiotics seemed to work less with each day of taking antibiotics.  This is odd, but the probiotics cause a lot of gas when you take them in the doses I was taking them.  With each day of antibiotics I was less gassy.  This could be that C Diff was winning in my intestines, or it could be that the antibiotic was killing the probiotics,  or it could be that with each day my body was becoming more accustomed to the probiotics.  Who knows.

Third, as soon as I got off antibiotics each time, and stayed on probiotics, the cramping and urges went away and the gassiness came back.

Fourth, I have never until now, taken a round of antibiotics without having a full relapse of C Diff since my first infection.  Also, I had never taken probiotics to self-prevent a relapse either.

My Case History Is Not a Clinical Study

Yes, it is possible that it’s all in my head and that the probiotics mimicked the C Diff hint symptoms.  We’ll never know, but I encourage others to write about their experiences and of course, work it all out with your physician first.

Disclaimer: I am not a physician.  You should consult a qualified physician for any worries and symptons you have related C Diff or any other ailment.

Tags: Antibiotics, Azithromycin, C Diff, Cramps, Gas, Probiotics, Tapering Schedule, Urge

Part 1 of this article can be found here.
Part 2 of this article can be found here.

I asked for more antibiotics

I’m still on antibiotics and I’m concerned about relapsing with C Diff.  However, the great news is that I actually requested a second round of anitbiotics (Z-Pak/Azithromycin) since my sinus infection was starting to come back and I was free of C Diff so far.

When I stopped the first round of antibiotics the hint of C Diff symptoms quit within 48 hours.  But as I started the second round of azithromycin I, daily noticed a few more hints.

Cramps and Urges Return

I am on day 4 of my second round of Z-Pak for a couple of days now I have been getting the familiar cramps and feelings of “needing to go”.  They have gotten a bit worse everyday.  I’m to the point that I worry I may be losing the battle to an onset of C Diff.  I have no diarrhea yet though, thank God!

I’m quitting the antibiotic

I think I’m going to stop the antibiotic.  This goes against conventional wisdom, I know, but it is my second round and the antibiotic’s half life indicates that it should continue working for a few days after I stop using it.   It should continue working and I won’t be pummeling my intestines with direct contact of the swallowed antibiotic.

What would be worse?  I return visit of C Diff right now or a possible return visit of a sinus infection?

So, the plan is to quit the antibiotic and double up on probiotics.

Tags: Azithromycin, C Diff, Probiotics, Relapse

Part 1 of this article can be found here.

Started Antibiotics

Well, I wasn’t getting better, so I decided to take the antibiotics before I had infection spread to my brain or something crazy.  As delirious as I was at this point, though, I knew I needed to do whatever I could to prevent a C Diff relapse.

I’m not a physician.  Do not use this as medical advise.  Please seek advise from a qualified physician regarding any worries you may have regarding C Diff or any other ailment.

I started myself on the following prior to starting my Z-Pak antibiotics:

• Lactobacillus GG (Culturelle) 2 pills @ 10 billion cells each – 4x per day
• Saccharomyces boulardii (Florastor) 2 pills @ 50mg each – 4x per day
• Dan Active containing 3 probiotics (Dannon) 1 drink @ 3.3oz each – 4x per day

Rationale

I’m taking these with meals and before bed.  I’m taking my antibiotic in the morning before the probiotics.   My theory is that since my antibiotic is once daily that I should get it into my system 30 minutes before the probiotics.  Then, it makes sense to me that you want the probiotics to go down with food, because they’ll be more likely to consume the sugars you send with them and have a better chance of survival or thriving.  Of course, keeping them coming on a regular basis throughout the day means that as the antibiotic may be killing the probiotics, they’ll always have a new backup battalion coming in a few hours.

I am excited to say that I’m 4 days into the antibiotics and I have no C Diff yet.  This doesn’t prove anything at all, but I sure am excited so far.  It is possible I no longer have C Diff harboring in my intestines at all anyway, but it is also possible that these probiotics are working.

I’ll update you as soon as I’m finished with the antibiotics.

[wp_surveys]

Tags: Antibiotics, Dan Active, Florastor, Lactobacillus casei, Lactobacillus GG, Probiotics, Relapses

Relapses everytime I take antibiotics

Because antibiotics seem to cause relapses in my C Diff, I have sworn to my family and friends that I won’t take antibiotics again unless it is life and death.  Everytime I have taken antibiotics since my first bout, I “get” C Diff all over again.

Common Cold

A week ago I had had a common cold for a week.  Then I started getting better.  Ok, cool, moving on into the Christmas season.  Then, I got worse with a fever and nasal congestion.  My thoughts, we’re “Uh oh, bacterial sinusitus?”  For 5 days more it got so bad that I could just moan from bed to my wife.  With a 102 fever I took some sick days.

Doctor demanded I take antibiotics

So, I went to the doctor and told him that I don’t want antibiotics, but I don’t want to put my life at risk for not taking them too.  He said, “If you don’t eat the bacteria, my fear is that it will eat you.  And you will be in some very bad shape.”  Bacterial sinusitus usually clears by itself, but sometimes it spreads to surrounding areas, like eyes, and even brain.

He understood my worries and my refusal to take antibiotics.  But, the choice was up to me.

So, I let him prescribe a Z-Pak (azithromycin) for me and I would decide by the end of the day whether to pick it up.

Should I take them?  NOT YET.

Tags: Antibiotics, Azithromycin, Dan Active, Florastor, Lactobacillus casei, Lactobacillus GG, Probiotics, Z-Pak

I am not a physician and you shouldn’t use this as advice.  Seek your own qualified physician’s advice for curing C Diff.

“How long does C Diff last?”

I’ve been asked this question many times and can relate.  Most colds and flu’s go away on their own in 2-3 weeks.  So, the first time you get C Diff your thought is, ok how long is this going to last?  Then, there are others who have been dealing with C Diff for months or longer…how much longer will their C Diff last?

Most People Will Have it Easy

The answer is tricky and not fun.  Typically you go on antibiotics after you are diagnosed.  The antibiotics (metronidazole, vancomycin, or whatever your physician prescribes) will last usually 10-14 days .  At this point, you’ll find that 80-85% of patients will be fine.  So, for most people it’ll appear to only last a week or two.  I say “appear” because there is an unknown number of people who will harbor C Diff in their colon or small intestine after that with NO SYMPTOMS.  So, is it over for them?   I was one of those people and a year later when I took amoxicillin for a cold (dumb idea) the symptoms of C Diff came back in full force and I tested positive again!

Some Will Take A Little Longer

So, for the 15-20% who relapse you go on antibiotics for 10-14 days again, or you may find physicians using the tapering method.  This is where your physician might ask you to go on antibiotics for a week or so, and slowly taper down the strength or amount of antibiotics over a month or so.  You may also be asked to try a pulsing method which is similar except you might take antibiotics every other day while tapering down to lower levels of antibiotics.   So, these methods will vary in time, so let’s assume it takes another 30 days.   Now we’re up to what, 45 days?

A Few Will Have a Long Battle

Well, you may stop the symptoms there, or you may be one of the 65% of patients who relapse AGAIN.  Yup, 65% of patients who relapse once are likely to relapse multiple times[1].  So, people who make it to this point just don’t know when it will be over.  I was one and it isn’t fun.  But, you cannot give up!

So, there we have it.  It’s not a very clear answer, but most people will be without symptoms in a few weeks.  At the other end of the spectrum, you may dealing with this a while.  But, you cannot give up on pursuing treatment.  C Diff is deadly serious, but the vast majority of people will find a good end to C Diff.   (check out the “what works” page)

No One Cares About Your Health More Than You Do

I believe that no one cares more about your health than you do.  YOU need to persist in finding your cure until you get it.  Keep going back to physicians and going to new ones.  Question them, and don’t give up.

I am not a physician and you shouldn’t use this as advice of any kind.  Seek your own qualified physician’s advice for curing C Diff.

[1] http://emedicine.medscape.com/article/186458-followup