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Has anyone been cured by Human Probiotic Infusion ?

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Ulcerative Colitis
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Posted 12/13/2010 4:03 AM (GMT 0)
I know most people are turning to this when all else fails and the protocol requires you to be in remission so there is no overwhelming majority of cured UC'ers who have tried it but I was wondering if anyone is rolling thru YEARS of remission not just a few months. If you have to keep doing it then its a bit like the worms - not really a cure. Thanks in advance.
Posted 12/13/2010 4:17 AM (GMT 0)
If I never had to take antibiotics again, then I might have been cured. Unfortunately, there are times in which I have to take antibiotics, and my fecal bacteria gets imbalanced again. But then, I never did get a chance to do the full fecal bacteria treatment. Perhaps, if I had, my fecal flora would be more in balance, making my colon stronger against antibiotic attacks.

Nevertheless, it got my most serious flare immediately into remission; so it's been well worth it. So far nothing else has come close to being as effective as fecal transplantation has been in treating my IBD. And with absolutely no negative side effects!

Post Edited (subdued) : 12/12/2010 9:20:03 PM (GMT-7)

Posted 12/13/2010 8:44 AM (GMT 0)
the protocol doesn't call for you to be in remission
Posted 12/13/2010 1:12 PM (GMT 0)
subdued,

Did you follow the Australian Doctors protocol or the one from the Indian doctor ? - Jinny/Jenny something.

Thanks.
Posted 12/14/2010 9:38 PM (GMT 0)
Our daughters last scope revealed 95% remission and a very healthy looking colon. We did a total of 5 FT. She has been on loads of meds including prednisone and nothing came close to reducing the inflammation like the FT did. I truly believe that changing the environment in the gut with healthy flora is the way to go.
Posted 12/15/2010 1:05 AM (GMT 0)
I seem to recall a paper of Dr. Borody's mentioning that a number of his patients remained in remission for the extent of his follow-ups (5 to 10 years in some cases). At this point, it's difficult to predict what sort of relief an individual might experience and for what length of time as the data that are available on HPI are mostly derived from case reports; no rigorous single-blinded (can't blind a fecal enema on the patient-side unfortunately) studies have been conducted as of yet.

As killcolitis said, the regimen doesn't require that you be in remission upon beginning, however it is recommended that your symptoms be under some measure of control. No bleeding should be occurring at the time of administration.
Posted 12/15/2010 1:43 AM (GMT 0)
I followed my own protocol, what I felt made sense for me.

I was not in remission. I was pred dependent. Every time I tried reducing my dosage, even by a tiny amount, I would bleed again. I was reaching the three-month mark. It was either try something harder or try fecal transplantation. I decided to go for the fecal transplantation.
Posted 12/15/2010 2:24 AM (GMT 0)
Momuc19, was your daughter on prednisone when you did the transplant/colonoscopy? I don't think a colonoscopy while on a high dose of prednisone is too accurate. I was healed when I was last scoped. My doctor said things looked great. A few months later, I was almost off prednisone and my symptoms returned with a vengence at 2.5mg. I had a sigmoidoscopy to determine whether it was caused by UC. At that point, the sigmoidoscopy showed I had some inflammation. It didn't look awful but definitely not as good as it looked after being treated with a higher dose of prednisone for a while.

I've read that fecal transplantation only works for people who have imbalances in bateria or c.diff. If it's genetic or immune related, it probably won't help you. Did you use antibiotics for a prolonged period of time? Have you had stool tests?

I wonder what is considered a lot of antibiotics? I've taken quite a bit in my life but never more than 2 weeks at a time.

I would definitely prefer to eat some worms here and there over taking loads of medication for the rest of my life. I've heard one batch of worms can live for a few years. Unfortunately, they are very expensive.
Posted 12/15/2010 4:08 AM (GMT 0)
Thanks Momuc19 - that is good to know.

notsosicklygirl - First heard of the worms it was the human whip worm and the gal in the story had to consume them every 2 weeks.

6 weeks of antibiotics is what started the ulcerative colitis for me.

I am in remission, no blood despite increased blood thinner dosing and it is now or never. If not now when ? My daughter is on vacation from school for 2 weeks as of friday and wants to stop the nonsense, the doctors say UC led to my stroke.

It is really hard to think about it as busy as I am especially when UC is not presenting with any symptoms but I have do what I can to be around for her so I say now that the work projects appear to be set for success, I need to start researching and planning a week of infusion. I have not heard of anyone harmed by this.
Posted 12/15/2010 7:15 AM (GMT 0)
I have never heard of consuming the worms that often. I 've read that the worms are provided in a small vial and you tape something to your arm and they enter that way. I am not sure what is true but I can't imagine them only lasting a few weeks when it's 3,000 for a batch of worms. I am pretty sure that a lot of the sites that provide the worms guarantee infection for a certain period of time or they will give you more worms.

You can read more at:
http://www.helminthictherapy.com/
Posted 12/15/2010 7:50 AM (GMT 0)

notsosicklygirl said...
I've read that fecal transplantation only works for people who have imbalances in bateria or c.diff. If it's genetic or immune related, it probably won't help you. Did you use antibiotics for a prolonged period of time? Have you had stool tests?

Yes. The idea of fecal transplantation is to put bacteria that's been lost back into the colon. It can help even those who are genetically prone to getting UC, because it helps balance fecal flora. Yes. I don't believe I'm genetically prone. However, I also did not have C.diff.
Posted 12/15/2010 11:59 AM (GMT 0)
I'm planning to do it in 2 weeks.
Next week antibiotics
Following week FT and delayed release PC to heal mucosa. I'm debating adding butyrate or sucralfate enema after 2 weeks of FT.
Posted 12/15/2010 2:43 PM (GMT 0)

Alba29 said...
I'm planning to do it in 2 weeks.
Next week antibiotics
Following week FT and delayed release PC to heal mucosa. I'm debating adding butyrate or sucralfate enema after 2 weeks of FT.

Alba29 I am on the same schedule but way behind in the research. Can you share what you have found out ? I do not see the reason why we should use antibiotics and there are many to choose from. Some effect the gut more than others. Is PC part of a recognized protocol or is it being added due to the prominence it has enjoyed on this board over the last couple of months? IOW I do not think my mucosa is currently injured thus not needing to be healed but perhaps it is expected to be injured to some extent during the procedure.

Thanks
Posted 12/15/2010 3:32 PM (GMT 0)
aguywithuc, this is what I have re: research:

1) bacteria invade colonic epithelial cells and then trigger host inflammation. A healthy mucosa will keep the bacteria from it, but ours doesn't work properly.

http://jmm.sgmjournals.org/cgi/content/abstract/58/5/535
http://www.plosone.org/article/info%3Adoi%2F10.1371%2Fjournal.pone.0012238

2) mucosa problems

http://www.ncbi.nlm.nih.gov/pubmed/15513358

and how to fix it

http://www.annals.org/content/147/9/603.full.pdf+html


re: antibiotics

a combo of 3 antibiotics cleaned up the good and bad bacteria (F varium responds to amoxicillin and C Diff and others to metronidazole)

http://columbiaresidents.org/bb/AntibioticsandUlcerativeColitis.pdf

the point is to kill bacteria and then heal the mucosa and reintroduce good bacteria using probiotics and FT.
Posted 12/16/2010 1:14 AM (GMT 0)
Alba29 - I appreciate you assembling that research response. When I told my GI doc I was planning to try this over xmas he said 'GOOD LUCK' he went on to say if the guy in Australia is only having 50% success how well do I expect to do working out of my 'Garage'.

I see his point, he might give me antibiotics or my really cool GP might. However I swore myself off antibiotics and really think taking them is playing with fire. I believe people posted they had success without them but I could be mistaken.

Thanks
Posted 12/16/2010 1:33 AM (GMT 0)

Alba29 said...
a combo of 3 antibiotics cleaned up the good and bad bacteria (F varium responds to amoxicillin and C Diff and others to metronidazole)

http://columbiaresidents.org/bb/AntibioticsandUlcerativeColitis.pdf

the point is to kill bacteria and then heal the mucosa and reintroduce good bacteria using probiotics and FT.

Interesting study. That would seem to indicate that some of us have UC from colonized evil bacteria not due to a lack of good bacteria.
Posted 12/16/2010 8:00 PM (GMT 0)

notsosicklygirl said...
Momuc19, was your daughter on prednisone when you did the transplant/colonoscopy?

 

I've read that fecal transplantation only works for people who have imbalances in bateria or c.diff. If it's genetic or immune related, it probably won't help you. Did you use antibiotics for a prolonged period of time? Have you had stool tests?

I wonder what is considered a lot of antibiotics? I've taken quite a bit in my life but never more than 2 weeks at a time.

I would definitely prefer to eat some worms here and there over taking loads of medication for the rest of my life. I've heard one batch of worms can live for a few years. Unfortunately, they are very expensive.

 

Yes, she was on prednisone at the time of the scope.  At that point she had been on it for a little over 3 months with NO change to her colon.  She had like 3 scopes before we did the FT's and they all showed severe ulcerated colitis.  The scope following the FT was when it showed 95 % remission and healthy mucuosa.

No we didn't use antiobiotics.  I was too afraid to.  No stool tests either.  We used her 14 year old sister.  Obviously, we know her medical history and she thankfully has a stomach made of steel !! LOL !! 

 

Posted 12/18/2010 1:15 AM (GMT 0)

subdued said...
I followed my own protocol, what I felt made sense for me.

Could you outline that or refer me to a post where you already detailed your protocol ? Thanks
Posted 12/19/2010 1:57 AM (GMT 0)
Alba 29-

A little off topic, however, caught my eye that your bio mentioned some chest pain.... I have been diagnosed with pericarditis-- inflamation of the lining of the heart, which is a rare secondary to UC.... when I am in a flare up, I get chest pain....

Posted 12/19/2010 8:45 AM (GMT 0)
aguywithuc,
Funny your Gi said that about you doing FT at home. Dr Borody has a home protocol which your GI can get for you (or you can get by googling it). The procedure isn't really all that hard to follow, you just have to decide if you want your donor tested, if you'll both follow the diet, do the lavage etc. Not difficult. That's probably one of the reasons a lot of GIs aren't too excited about this.
Posted 12/19/2010 2:01 PM (GMT 0)

aguywithuc said...

I see his point, he might give me antibiotics or my really cool GP might. However I swore myself off antibiotics and really think taking them is playing with fire. I believe people posted they had success without them but I could be mistaken.

Yes. That would be me. The main reasons I did not take antibiotics to kill the bad bacteria are:

1. My GI was not going to proscribe antibiotics. He believed I had UC, not a bacterial infection. I could tell that he would not support my doing the procedure if I had asked him. Who wants to take the chance of being sued for recommending a procedure that they know little about and that does not have backing from the medical industry?

2. The reason I have this disease is from taking antibiotics. It's just not palatable to take something that is the cause of my problem.

This doesn't mean that I'm against taking antibiotics to kill bad bacteria before doing fecal transplantation. If there is an overabundance of bad bacteria, then it could be beneficial to reduce that overabundance before introducing all kinds of bacteria from a donor's feces. I just didn't want to go that route.

Post Edited (subdued) : 12/19/2010 7:04:25 AM (GMT-7)

Posted 12/19/2010 3:03 PM (GMT 0)
Here's a rat study, the results actually favored doing the procedure without
antibiotics. Dr Borody is in favor of doing the procedure with antibiotics.

I have the actually whole complete rat study, its just scientific mumbo jumbo thats
alittle above my comprehension.

I will try without, but I don't think anyone really knows the perfect HPI procedure
Posted 12/19/2010 3:03 PM (GMT 0)
Nice I post that & forget the link lol

http://www.genomeweb.com/sequencing/fecal-transplantation-alters-rat-gut-microbiomes
Posted 12/19/2010 8:40 PM (GMT 0)
Alba29, which antibiotics are you using?
Posted 12/19/2010 9:14 PM (GMT 0)
Killcolitis, I'm starting on Monday with amoxicillin and flagyl for 1 week - getting dental surgery.
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