Advice Re: Gut Bacteria

Daffodil

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Hi All. I am about to start DIY FMT. I did 6 enemas already several months ago. They were REALLY expensive and only helped for 3 days.

I have been joining groups and reading various things about this subject.

I have come to the realization that due to my 27 yr long illness and my continuous use of antibiotics for 6 - 7 yrs, the FMT benefits will likely be only temporary no matter how many I do, unless I clear out the overgrowth first.

But how do I do this? I do not want to order vancomycin online and use it without a doctor's supervision, which I do not have here. Noone local would prescribe it and I am not in a position to travel.

All I know is, I have massive overgrowth of enteroccoccus and streptococcus. It must be enteroccoccus faecialis because the only time my brain fog cleared in 3 decades, is when I was on IV Rocephin.

Do you guys think I should order some kind of Rocephin online (cant do IV but I think they have other forms)?

Should I find a doctor and do long distance consults? This would be very difficult to afford but I might have to consider it. But..whom should I talk to? I tried to email Dr. Barody's office but I don't think he does that and it takes a month to even get a return email from the office. Also Australian rules are changing July 1 so they can no longer treat anything but UC or C Diff with FMT.

Do you guys know anyone, aside from KDM, who knows a lot about gut bacteria and hopefully also FMT?

Also, has anyone used phage therapy with success? If so, how do I source the phages?

Thanks for reading!
 

Alvin2

The good news is patients don't die the bad news..
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Buy the polyethylene glycol treatment they use for colonoscopy, it will clean you out like nobodys business.
Your local pharmacy should have it.

As i recall 15mg Dulcolax the night before (they sell it OTC), then drink the gallon of solution the next day.
 

junkcrap50

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Consider using a “Colon Tube” to place the FMT deeper into your colon. Wish I knew of it when I was doing my FMTs. But depending on the type, using one that’s not very soft could risk perforating your bowel. Some look like soft latex. Others look kinda plastic-y and rigid.
https://www.amazon.com/s?k=colon+tube&ref=nb_sb_noss

Rifaximin is usually the antibiotic used prior to FMTs. It’s not absorbed and stays in the intestines. It’s safer than vancomyocin which can cause hearing loss.

I also would recommend not eating too much fiber or change your diet from your normal diet during and after the FMTs. I think I screwed up my FMTs with too many prebiotics.
 

EddieB

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All I know is, I have massive overgrowth of enteroccoccus and streptococcus
May I ask, how did you find this out? I show elevated streptococcus on GI map/ stool test, but I don’t know if it’s a little high or sky high from the results. And do you suspect the strept is in the small or large intestine?
 
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kangaSue

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I have been joining groups and reading various things about this subject.
Did you join the 'Faecal Transplant, Microbiome & GI Disease Support (Australia Based)' facebook group? If so, searching the group posts using keywords 'phage therapy' brings up a lot of info about phages from Eliava Phage Therapy Centre in Tbilisi, Georgia.
The main contributor in this group who is using their phages says it costs about A$3,500 for a full course
https://eliavaphagetherapy.com/about-phage-therapy/
I have come to the realization that due to my 27 yr long illness and my continuous use of antibiotics for 6 - 7 yrs, the FMT benefits will likely be only temporary no matter how many I do, unless I clear out the overgrowth first. But how do I do this?
Doing a bowel purge with a colonoscopy prep is known to also shift a bacterial overgrowth, as in it can turn a positive test to negative, but won't necessarily help to improve the symptoms.
You could also take a course of one of the herbal preps known to be as effective for SIBO as rifaxamin prior to a bowel purge.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/
 

Daffodil

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Consider using a “Colon Tube” to place the FMT deeper into your colon. Wish I knew of it when I was doing my FMTs. But depending on the type, using one that’s not very soft could risk perforating your bowel. Some look like soft latex. Others look kinda plastic-y and rigid.
https://www.amazon.com/s?k=colon+tube&ref=nb_sb_noss

Rifaximin is usually the antibiotic used prior to FMTs. It’s not absorbed and stays in the intestines. It’s safer than vancomyocin which can cause hearing loss.

I also would recommend not eating too much fiber or change your diet from your normal diet during and after the FMTs. I think I screwed up my FMTs with too many prebiotics.
i have not heard of using rifaxamin before FMT aside from one doctor. everyone seems to use vanco or nothing. in the past 27 yrs, the only antibiotic that cleared my fog while i was on it, was IV rocephin. I guess it was killing the enteroccoccus faecialis?

I bought and tried the colon tube but i have to find one as thin as the PVC tubes cuz even a little thicker, and I cannot get it in. That entire area for me is swollen and sensitive. always has been. I guess I Have really bad inflammation all over.

i assume your FMT attempt did not work on the disease? may i ask for more details? how many did you do?

It is very disappointing that Barody cannot do it for people like us anymore. Not that I could afford to go there, but ...just very sad. damn drug companies.
 

Daffodil

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Buy the polyethylene glycol treatment they use for colonoscopy, it will clean you out like nobodys business.
Your local pharmacy should have it.

As i recall 15mg Dulcolax the night before (they sell it OTC), then drink the gallon of solution the next day.
I do have that stuff and this time, I will use it.
 

Daffodil

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May I ask, how did you find this out? I show elevated streptococcus on GI map/ stool test, but I don’t know if it’s a little high or sky high from the results. And do you suspect the strept is in the small or large intestine?
I used to see KDM, who would order the testing from RedLab in Belgium. Strangely, I cannot find that they told me the exact strains though.....but it was massive overgrowth the last I checked, which was 2018. Like 6 times more than normal and getting worse each test.
 

Daffodil

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Did you join the 'Faecal Transplant, Microbiome & GI Disease Support (Australia Based)' facebook group? If so, searching the group posts using keywords 'phage therapy' brings up a lot of info about phages from Eliava Phage Therapy Centre in Tbilisi, Georgia.
The main contributor in this group who is using their phages says it costs about A$3,500 for a full course
https://eliavaphagetherapy.com/about-phage-therapy/

Doing a bowel purge with a colonoscopy prep is known to also shift a bacterial overgrowth, as in it can turn a positive test to negative, but won't necessarily help to improve the symptoms.
You could also take a course of one of the herbal preps known to be as effective for SIBO as rifaxamin prior to a bowel purge.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/
oh wow thanks hadnt heard of the herbal preps. I found an old publication by the dove clinic which recommended "Oxy-Klenz" for a few days before the FMT. probably i will end up just doing Moviprep cuz I am so incredibly foggy I can barely remember to take anything or do anything.
 

Daffodil

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Have you had a colonoscopy recently to make sure its not something conventional medicine treats?
yes. the colonoscopy i had was ages ago. they said my entire rectal canal is inflammed but all they suggested was some kind of cream on the rectum to prevent bleeding.

I see no benefit to seeing any doctor here in Canada for almost anything now, other than to request prescriptions or tests. I have a compassionate one now but.....I am not going to get the kind of help I need here. ever
 

Daffodil

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Did you join the 'Faecal Transplant, Microbiome & GI Disease Support (Australia Based)' facebook group? If so, searching the group posts using keywords 'phage therapy' brings up a lot of info about phages from Eliava Phage Therapy Centre in Tbilisi, Georgia.
The main contributor in this group who is using their phages says it costs about A$3,500 for a full course
https://eliavaphagetherapy.com/about-phage-therapy/

Doing a bowel purge with a colonoscopy prep is known to also shift a bacterial overgrowth, as in it can turn a positive test to negative, but won't necessarily help to improve the symptoms.
You could also take a course of one of the herbal preps known to be as effective for SIBO as rifaxamin prior to a bowel purge.
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4030608/
Thanks! Yes I did actually come upon that clinic during a search. May I ask if you have done FMT and if so, how did you do?

Most stories are either of remissions, very temporary remissions, or nothing happening at all. No pattern that I can discern.
 

Alvin2

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yes. the colonoscopy i had was ages ago. they said my entire rectal canal is inflammed but all they suggested was some kind of cream on the rectum to prevent bleeding.

I see no benefit to seeing any doctor here in Canada for almost anything now, other than to request prescriptions or tests. I have a compassionate one now but.....I am not going to get the kind of help I need here. ever
I would look for a better Gastroenterologist. If you have something like Crohns they have drugs for it.
 

Daffodil

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But if you have seen an idiot who gave you laughable advice someone competent might give you a better diagnosis for the gut issues.
i am in canada, alvin. it is different here. lol i also do not want immunosupressants when i could use some good old fashioned poop, whatever it is. and no one is gonna help me with that here, thats for sure