Long-lasting e coli infection - Dr Hive (UPDATE - Post#1)

[jen3kids]

My dd tested positive for e coli on February 25. We don't know where it came from, possibly the result of a gut imbalance after having the flu in mid December, but not likely food borne.

She has been tested 4 more times since February and the latest test is still positive. The GI specialist conferred with an Infectious Disease specialist after the third positive test who recommended an higher dose probiotic, so she has been taking a 100 billion dose each day for the past month but still a positive result.

Does anyone have any experience with such a long lasting e coli infection? The only symptom she has is a bit of a blah feeling in the morning - a bit crampy and slightly nauseous. But she is fine the rest of the time.

It is frustrating for her because she cannot work at her part time job and she is worried that it will get worse again.

Thank you

 

 

UPDATE - June 9

 

I spoke with our GI specialist, who consulted with the Infectious Disease Specialist, who is wondering if my dd is not reinfecting herself.  I find that highly unlikely, but we have bleach-bomb-cleaned her bathroom (which I've done at least twice since this whole thing started) and I stressed super-duper handwashing - she was totally grossed out and insulted at the insinuation that she doesn't wash her hands well after using the bathroom.

 

Adding the S boulardii has made her feel better - yay!  I asked her to rate how she was feeling on a scale of 1-10, with 10 being throwing up and diarrhea and  1 being totally fine.  She said close to a 1, so it seems to be working after less than a week of taking it.  I'm waiting for public health to tell me when to get her tested again.  

 

Thank you for all your recommendations!  They seem to be working!

 

Jen

Edited June 10, 2016 by jen3kids

[Laurie]

The CDC website says that some people will shed the bacteria for several months.  http://www.cdc.gov/ecoli/general/

 

Not sure if this helps at all, but my daughter has been dealing with a gut imbalance.  (not e coli).   The dr. wanted her to take a very strong probiotic (50 billion), but she had very uncomfortable side effects from it and had to use a lower strength formula.  

 

I hope your daughter feels better soon!  

[jen3kids]

Thank you.

 

The first thing the Infectious Disease Specialist said was that it could take months, but we are starting month number 4 (6, if you go back to when she had the flu before Christmas)

 

Dd started at 30 billion in February, then up to taking it 2x/day, and is now taking 100 billion 1x/day. I wonder if they will suggest taking it 2x/day. The 100 billion had not bothered her.

 

I hope your dd feels better too.

[rmtzc2009]

My mom had an e coli infection that lasted months. Doctors kept having her take antibiotics and said it would eventually go away. Her symptoms got worse and she ended up in the ER. The ER doc ran tests to determine the specific e coli strand and found that she had a very resistant strand that required IV medication. Oral antibiotic were useless for what she was dealing with. She had a port put in & had IV meds for about a week.

 

I hope your daughter feels better soon!!

[jen3kids]

My mom had an e coli infection that lasted months. Doctors kept having her take antibiotics and said it would eventually go away. Her symptoms got worse and she ended up in the ER. The ER doc ran tests to determine the specific e coli strand and found that she had a very resistant strand that required IV medication. Oral antibiotic were useless for what she was dealing with. She had a port put in & had IV meds for about a week.

 

I hope your daughter feels better soon!!

 

Interesting... we were told no antibiotics because they 'feed' the e coli and to just let it run its course and allow the probiotics to deal it.  I feel like we have done that, but are not seeing the results.

 

I hope your mom recovered and is better now.

[Spryte]

I have a long, sordid history with gut dysbiosis.

 

E. Coli and C. Diff have been the big culprits. Along with - yes, gross - a tapeworm. The E. coli is gone, I think, and it's been a few years (we are just about to verify that, I could be wrong, awaiting test results).

 

I am thinking back to how we treated the e. Coli... I may have taken a round of specific abx, I can't quite recall. But I know I took a plethora of supplements from an integrative meds doc who specialized in GI issues, after I'd exhausted traditional med options. I remember taking garlic in large doses. And tons of very high quality probiotics. And S. Boulardii was a must. Is she on S. Boulardii? I prefer Florastor. If you decide it would be helpful, I can look up what I took, in my med records.

 

Have you considered a fecal matter transplant? I know. Yuck. But get past the yuck factor and it can be miraculous. I would not hesitate. In fact, it's highly suggested for me but I don't have a donor. I thought I did, but it turns out my DD isn't. Aaack! A suitable donor needs to be healthy, of healthy weight, and hasn't been on abx for quite some time (my DD is on abx, right when we were ready, so it's back o the drawing board for me). A FMT from a healthy donor would recolonize her gut with healthy flora.

[Spryte]

Interesting... we were told no antibiotics because they 'feed' the e coli and to just let it run its course and allow the probiotics to deal it. I feel like we have done that, but are not seeing the results.

 

I hope your mom recovered and is better now.

Abx don't feed the bacteria. But they do kill off other beneficial bacteria and gut flora that would normally keep e. Coli and other "bad" bacteria in check. So the bad bacteria flourishes. Not good. I'm surprised they didn't say it that way, but "feed" is a shorter, still effective explanation. But yes, sometimes E. coli is treated with specific abx.

 

I hope your DD feels better.

 

She might want another opinion.

Edited June 1, 2016 by Spryte

[jen3kids]

I have a long, sordid history with gut dysbiosis.

 

E. Coli and C. Diff have been the big culprits. Along with - yes, gross - a tapeworm. The E. coli is gone, I think, and it's been a few years (we are just about to verify that, I could be wrong, awaiting test results).

 

I am thinking back to how we treated the e. Coli... I may have taken a round of specific abx, I can't quite recall. But I know I took a plethora of supplements from an integrative meds doc who specialized in GI issues, after I'd exhausted traditional med options. I remember taking garlic in large doses. And tons of very high quality probiotics. And S. Boulardii was a must. Is she on S. Boulardii? I prefer Florastor. If you decide it would be helpful, I can look up what I took, in my med records.

 

Have you considered a fecal matter transplant? I know. Yuck. But get past the yuck factor and it can be miraculous. I would not hesitate. In fact, it's highly suggested for me but I don't have a donor. I thought I did, but it turns out my DD isn't. Aaack! A suitable donor needs to be healthy, of healthy weight, and hasn't been on abx for quite some time (my DD is on abx, right when we were ready, so it's back o the drawing board for me). A FMT from a healthy donor would recolonize her gut with healthy flora.

 

I was just looking up S. boulardii and was hoping to get some tomorrow.  Do you recommend Florastor over other, less expensive ones like Jarrow?

 

She is currently taking Garden of Life, Raw UltraCare 100 Billion and it works better than the first one - meaning she seems to be in a holding pattern for the last 6 weeks - just dealing with morning discomfort, slight cramping and nausea.  

 

I cannot imagine doing a fecal matter transplant and cannot imagine bringing it up to her.  She would be totally freaked out by it, but if it comes to that.....

 

If you are able to see what you took, I would really appreciate it. 

 

Thank you so much for taking the time to share your experiences.  It is good to know we are not alone in dealing with this.

[Spryte]

I prefer Florastor because they've done studies with it on its effectiveness against C Diff. There's been a lot of research with that particular brand. And I've felt it to be more effective, but that could be in my head. :) I take more than the recommended dose, but if constipation starts - that's a sign to back down a bit.

 

For probiotics, definitely switch them up often. Take high quality brands, that need refrigeration. VSL 3 is a Rx type, but I also like Culturelle, and one by, I think, Pure Encapulations.

 

I will find my records, and figure out what I took. Is a pm ok for that? It will take me a day or so - we moved, and I'll have to find the right box!

 

Yes, the FMT has been recommended for me for a few years but it took me a long time to get past the freak out factor. There's a poster here with experience, and she made me feel much better about it.

[Spryte]

And - oh dear - I'm having sympathy cramping for her. It's so awful. I hope you get answers quickly.

[jen3kids]

I prefer Florastor because they've done studies with it on its effectiveness against C Diff. There's been a lot of research with that particular brand. And I've felt it to be more effective, but that could be in my head. :) I take more than the recommended dose, but if constipation starts - that's a sign to back down a bit.

 

For probiotics, definitely switch them up often. Take high quality brands, that need refrigeration. VSL 3 is a Rx type, but I also like Culturelle, and one by, I think, Pure Encapulations.

 

I will find my records, and figure out what I took. Is a pm ok for that? It will take me a day or so - we moved, and I'll have to find the right box!

 

Yes, the FMT has been recommended for me for a few years but it took me a long time to get past the freak out factor. There's a poster here with experience, and she made me feel much better about it.

 

A pm is fine.  Thank you so much.

 

 

And - oh dear - I'm having sympathy cramping for her. It's so awful. I hope you get answers quickly.

 

Actually, she's not nearly as miserable as she was back in February.  I think the probiotics are holding it at bay, and as she says, "It is just annoying now.  I want it to go away."

 

In February, she was unable to sleep due to abdominal pain, was constantly nauseous, threw up most days at least once, had diarrhea daily.  The first probiotic worked for a month or so, then we doubled it, then started a different one.  It has been about 6 weeks on it, so maybe it's time to switch again.  Maybe Culturelle - it was one of the first ones we explored but chose Nature's Way for some reason or another. 

[wapiti]

My two cents - I'll throw out some random thoughts in case something strikes a chord:

 

We have found Jarrow S. Boulardii to be of good quality generally.  I can't compare to Florastor.

 

There are some strains of e. coli that attach to certain types of glucose molecules, D. Mannose to be specific, and as a result cannot attach to the body (and then get flushed away).  D Mannose works great for UTIs caused by e coli though I don't know whether the same strain of e coli is typically found in the digestive tract.  It's just the first thing that comes to my mind for e coli and is so easy to take, no side effects, etc.

 

I recently bought some soil-based probiotics for my ds.  I don't have much to report except that I tried them a few times close to bedtime and I had trouble sleeping - odd but interesting.

 

While I'm mentioning random odd supplements there's another interesting one, a component of seaweed called fucoidan.  I buy one by KAL for various reasons.  Anyway, apparently it may reduce fecal e coli (in piglets :tongue_smilie:).  Like mannose, it involves a type of saccharide, in this case a sulfated polysaccharide.

Edited June 1, 2016 by wapiti

[prairiewindmomma]

S. Boulardii was key for us. We used Florastor as well.  

 

Wapiti may be on to something with the suggestion of D. Mannose. We've used that successfully with e.coli caused UTIs. 

 

 

[Spryte]

The Florastor was better tolerated here than the Jarrow. Costco has a great price.

And sometimes they have sales/coupons. Love it.

[Spryte]

Ooooh! I'm off to order some. Thanks!

 

OP, I'll dig up what I can for you, and give you names of my current round of supplements that I've just brought home from the doc's office and haven't started yet. (I'm having a flare up of something, ugh.)

[Ottakee]

My teenage daughter had a fecal transplant last December for C diff.....and it was wonderful. We wish we could have done it much earlier than the 6 months we did antibiotics and Florastor.

[MamaBearTeacher]

How did they test for the E. coli?

[jen3kids]

How did they test for the E. coli?

Stool sample.

[sassenach]

My two cents - I'll throw out some random thoughts in case something strikes a chord:

 

We have found Jarrow S. Boulardii to be of good quality generally.  I can't compare to Florastor.

 

There are some strains of e. coli that attach to certain types of glucose molecules, D. Mannose to be specific, and as a result cannot attach to the body (and then get flushed away).  D Mannose works great for UTIs caused by e coli though I don't know whether the same strain of e coli is typically found in the digestive tract.  It's just the first thing that comes to my mind for e coli and is so easy to take, no side effects, etc.

 

I recently bought some soil-based probiotics for my ds.  I don't have much to report except that I tried them a few times close to bedtime and I had trouble sleeping - odd but interesting.

 

While I'm mentioning random odd supplements there's another interesting one, a component of seaweed called fucoidan.  I buy one by KAL for various reasons.  Anyway, apparently it may reduce fecal e coli (in piglets :tongue_smilie:).  Like mannose, it involves a type of saccharide, in this case a sulfated polysaccharide.

 

We've dealt with a lot of e coli UTI issues. Not sure if this is helpful in your case, but I second the D-Mannose as effective for that. Also Uva Ursi, but it can be hard on the liver, so I wouldn't take it if that's a concern.

 

Honestly, I would try to push past the skeev factor on the FMT possibility. It has such an amazing track record.

[jen3kids]

Thank you everyone, for your words of experience and suggestions on how to get past this. She will be starting Florastor tomorrrow.  

 

One more question... do you think diet affects the e coli?  My dd eats a high carb/protein diet with little fruits and veggies.  She's a typical teen in that regard, and probably too much sugar as well.  I have suggested that she keep a food diary along with 'how I feel today', but she is not convinced.

 

Thank you.

 

Jen

[jen3kids]

An update...

 

I got the Jarroe brand because that is what the health food store had. She'll start taking it tonight and continue with the probiotic - the same one she has been taking so as not to introduce 2 changes at once.

 

I spoke to the public health nurse at length and despite a bit of fear-mongering, I got some good info from her. Dd does not have e coli O157, but a different non-specified type that is producing the shigella toxin. She has no idea why dd is not more sick, but she recommends a colonoscopy to rule out other, unnamed, possibilities.

 

I am expecting a call from the GI's office on Monday to hear what the Infectious Disease specialist recommends now.

 

Thank you for all your support. I will update when I have more answers (or questions!)

 

Jen

[jen3kids]

An update...

 

I got the Jarroe brand because that is what the health food store had. She'll start taking it tonight and continue with the probiotic - the same one she has been taking so as not to introduce 2 changes at once.

 

I spoke to the public health nurse at length and despite a bit of fear-mongering, I got some good info from her. Dd does not have e coli O157, but a different non-specified type that is producing the shigella toxin. She has no idea why dd is not more sick, but she recommends a colonoscopy to rule out other, unnamed, possibilities.

 

I am expecting a call from the GI's office on Monday to hear what the Infectious Disease specialist recommends now.

 

Thank you for all your support. I will update when I have more answers (or questions!)

 

Jen