Fecal Infusion (Tom Borody's Treatment)

Guest · Postby **Guest** » Sun Aug 19, 2001 10:34 am

Hi, Summary After years of chronic diarrhoea, I have decided to use the 'faecal enema transplant' approach proffered by GI Tom Borody to treat C Diff. I am on day 1 of the treatment and happy to share my experience / outcomes. David. ========================== I have had chronic diarrhoea since birth. When 5 days old, I was diagnosed with a monosaccharide intolerance (intolerance to common sugars) which I have managed with a strict diet ever since (36 years). (It remains to be seen if this diagnostic is correct or not). About 10 years ago, I had a sever bout of 'gastro' which did not seem to diet-related. I suspect I contracted it from my partner - a nurse. It cleared up but symptoms came back periodically. About 5 years ago it became chronic. After repeated antibiotics, a GI did stool cultures, an endoscopy, a colonoscopy, a barium enema X-ray, pancreatic X-rays and finally announced that I had non-specifc IBS and to see a counsellor for stress. I saw a variety of 'alternative' therapists and gained some relief but this was transient and by 2000, I was on an off antibiotics - each episode getting worse. Standard stool cultures were negative. I saw another GI who wanted to run the same tests as before but I refused the invasive ones until he could tell me something concrete (much to his horror - a patient controlling proceedings - unheard of!). In the middle of his investigations, I saw a different GP (for some unrelated problem) and, based on my records, he suggested another GI - Tom Borody. For a start, Tom respected my background in biology and my self diagnosis - I remember saying 'I don't know what it is, but based on the symptoms, it seems to be an antibiotic resistant parasite'. And he had a sense of humour about the whole thing (as opposed to the sense of self-importance I'd come up against before). He ran blood and stool tests. Once again, the standard 3 day stool test showed nothing but the more specific 'fixative' tests turned up 5 bugs including C Diff (I can dig up the names of the others if people are intereted). A 20 day course of 4 antibiotics knocked out 4 of the bugs (just as he said). Tom then suggested his infusion treatment for the C.Diff. (faecal enema from a healthy donor repeated daily for 5-10 days). Having studied biology and lived with nurses, I grilled him about the bio-hazards of this approach as well as the success rate. By this stage, I was happy that he knew his stuff! For those that are concerned, taking someone else's stool into you bowel is not as risky as any other form of transplant as the inside of the bowel is technically outside the body proper. There is the risk of contracting some gut infection that the other person may have but picking your donor carefully and the testing of them mitigates this risk. This mitigated level of risk then needs to be weighed up against potential benefit (something we do every time we drive a car). I decided to go ahead and today (Aug 19) was my first infusion. If people are interested, I am happy to post more information on the process and my progress. You can add to this bulletin or contact me direct on <a href="mailto:david.doig@aexp.com">david.doig@aexp.com</a> . David. [Guest Posted by: 'David']

Guest · Postby **Guest** » Mon Aug 20, 2001 6:23 am

David, Good luck with your procedure. I am very interested in hearing your story. I just went to my local doctor today and got a referal to talk to a GI Doc. about a human donor. I had not realized it was an enema you had to repeat daily. Does the doctor do the enema or are you left on your own to deal with it all? I have had C-Diff twice now and have managed to get rid of it (hopefully). I am not happy with having to live wondering when I will have to take anti-biotics again and if/when it will return. I live in Australia, where are you from? [Guest Posted by: 'Breeze']

Guest · Postby **Guest** » Tue Aug 21, 2001 3:08 am

Good on you David.I am also Dr. Borody's patient.I had infusions in Feb 2001.I just wish I had done it sooner. [Guest Posted by: 'jillian']

Guest · Postby **Guest** » Sun Sep 09, 2001 9:31 pm

Robin, The cost depends on whether you do it at home (about $150 in equipment) or at the clinic (about $1700). It is my understanding that the clinic is now the only option unless geography makes it impossible but you had best check this with Dr Borody or Sharyn. Regards, David. [Guest Posted by: 'David']

Guest · Postby **Guest** » Sat Oct 20, 2001 6:45 pm

Dr.Borody is no longer allowing people to do the infusions at home.David has the honour of beening the last of home treatments. Having the tests done is very important,Dr Borody uses 2 different labs.He is also getting a bank of good donors.Not all donors have the "fighting agaist c.diff" bacteria. It is 6 months since my last infusions, and is still improving all the time.I have got fat, and can eat everything, except greasy foods, which is just as well. I was very sick with c.diff and I now have post infection fatigue. Keep pushing for a doc to do it there,or come over here.I don't live in Sydney, and I don't know how cost work for overs sea patiences. We are a generous and caring lot.I am sure we can help. [Guest Posted by: 'Jillian']

Guest · Postby **Guest** » Sun Oct 21, 2001 8:58 pm

Update from David. At the end of this week, it will be 2 months since my infusions. My symptoms are less frequent and less severe but a long way from 'normal'. I'm gaining weight - even to the extent of having fat on my abs which I've never had before (eeekkkk - off to the gym for me). Being an impatient perfectionsist, I've gone back to Dr Borody to see what else can be done. I'm about to be re-tested for all the bugs. I then intend to undergoe a jejunum naso-tube infusion as my symptoms would suggest restoration of the large intestine microbes but not the small intestine. There is also circumstantial evidence of some bug other than C.Diff in the small intestine. I shall continue to post updates here but don't hesitate to email me. David. [Guest Posted by: 'David']

Guest · Postby **Guest** » Sun Oct 21, 2001 9:10 pm

hi and thanks to Carolyn, jillian and MX, I live in Seattle Wa and have been searching for a doc not only to do the procedure but just to even listen to the theory and discuss with me ways I might get it done. The GI's here are hopeless; they don't even want to know and the ones I've approached so far clearly see me as a "whacko" and won't even refer me to other docs or consider the info I've researched and provided to them, including all of Dr. Borody's clinical protocol. So, I haven't, so far, been able to get a doc to ok the tests for donor screening, or to agree to the antibiotic RX for me before I do the infusion, or to consider the procedure at all. I still have a couple docs to go so we'll see. But then, I MAY have a colonic technician who MAY be willing to help me with the procedure at home if I can get the donor(s) screened and the meds Rx needed. That's still to be determined. She wants to study the info and get back to me. I don't have donors yet as Sharyn emphasized it's important to have at least one male donor or only a male donor as women's monthly hormone swings affect the strength of the flora too much. My husband can't be my donor cuz he's had cancer and the related chemo and radiation and altho he's superbly healthy now, Dr. Borody is concerned about using anyone who has a cancer history. So I'm looking for male donors as my family sibs are at too far a distance. I think I can solve that issue as long as I can find someone reliabe for staying on the diet for the required time. If I could use women, it'd be no problem cuz I have lots of close friends who'd be glad to do it. I have the enema equipment I ordered frm Borody's clinic. But it just seems prudent to have a Dr. follow me just in case. As to using the California doc, if he becomes amenable to doing it Borody's way, i.e. at least 5 infusions and possibly ten, then that's a definite possibility. Hve you discussed with him Borody's particular procedure? Thanks for all your posts and I'd love to keep talking about this. Maybe we really can find a W.Coast doc who'd do this for all of us. I'll let you all know if one of my still-to-be interviewed docs agree. Liz2 [Guest Posted by: 'Liz2']

Guest · Postby **Guest** » Tue Feb 05, 2002 2:08 pm

Sam & Friday, I said I would let you know if I do anything. Well, I contacted Dr. Borody's nurses (Sharyn and Elaine) and I ordered the eqipment to begin the infusins. I am doing them at home, and will be starting today, (Tuesday). I prepared with 5 days of Vanco, then did a Fleet Phospho soda prep yesterday. I started a high fiber diet and begin 10 days in a row of infusions. Will let you know how it goes. The cost was only about $250 and the procedure seems like it won't be too rough. I want to state that I am only able to do this because of Dr. Borody's research and his kindness to help me to do this at home. Without him I wouldn't have any hope at all for my future. I am to document my bowel habits for about 4 weeks. I am guessing that I will know a little more at that time about how well it worked for me. [Guest Posted by: 'Carolyn']

Guest · Postby **Guest** » Wed Feb 06, 2002 3:54 pm

Hi all, I'm reporting in, finally, re: my treatment at Dr. Allen's. I'm still working on my full Case History and will post it soon, but for now, I'm just hear to say that it, unfortunately, didn't work. I can't say enough good things about Dr.Allen and his staff; they are simply the most professional, competent and caring health-care folks I've dealt with in years. But as he warned me, 30% of 1st patients getting his infusion fail the the treatment. I did feel wonderful, and totally "well" for the first week or so post-tx, but then things went downhill fast and I'm back to all my old symptoms. However, I must acknowledge that my case is a bit unusual in that I had many infections besides C.diff. and over a long (6 yrs) period in my gut. Who knows what's really going on for me; it could be C.diff, it could be early stage bowel disease, it could be "IBS". So, I'm reevaluating my options and considering trying the Allen tx again, or possibly going ahead and doing Borody's tx at home if I can find a qualified donor. Just don't know yet and probably won't decide for awhile. Dr. Allen's nurse has encouraged me to go on Culturelle to see if that helps and I've started this week. We'll see.... [Guest Posted by: 'liz2']

Guest · Postby **Guest** » Sat Feb 09, 2002 1:41 am

Hey all, Just a quick update on Dr. Borody's procedures. I finished day 4 and am hanging in there pretty well. I think my mom and I have figured out a routine now. If anyone wants to know details (kind of gross) you can e-mail me at <a href="mailto:Serenaty77@msn.com">Serenaty77@msn.com</a> . (Just note c-diff in the subject area as I tend to delete messages I don't recognize.) I am so grateful to Dr. Borody, as it just wasn't financially possible for us to go to him. I am very fortunate that my husband is not only my donor, but has taken over my chores and driving my kids around so I can rest with as little stress as possible. Also, my husband's doctor was great and ran all the tests needed on him to make sure he was ok. Also, you MUST check with Dr. Borody's nurses to be sure, but I believe they may be using some female donors. I thought I remembered someone saying that they weren't supposed to use a female donor. Something to check out for those who may not have a male donor handy. I will say that it is nice that my mom is an RN as she has been subjected to just about everything, but if anyone has a trusted friend or relative (with a strong stomach) this procedure can be done at home. Especially because I think doctors here are going to avoid it. I just don't understand how they can ignore this when it is possible to get cured. I will say that if it doesn't work this time, I will be willing to repeat this in 6 months if needed. I will do whatever it takes to get well. I will update you all end of next week. I have 6 more procedures to go. [Guest Posted by: 'Carolyn']

Guest · Postby **Guest** » Sat Feb 16, 2002 1:25 am

Hi, I finished 10 days of infusions and got through them ok. I had my first day without them today, and even ate pretty well. So far so good. Sharyn said I will have some good days/possibly weeks, and then some bad days. We will know for sure in 6 months if this cured me. I am really glad I did it, and hopefully this will mean a complete recovery for me ahead. I have said it before, and will say it again, it was not that hard to do at home and I would do it again in a second if need be. It was nothing compared to the suffering I have endured for nearly 3 years. I will post again in a few weeks. [Guest Posted by: 'Carolyn']

Guest · Postby **Guest** » Fri Mar 29, 2002 1:42 am

Update- It's been about 6 weeks now. I am doing very well. I am eating pretty much whatever I want, but am keeping it as healthy as possible. My stools are completely normal! I did tolerate the spray antibiotic that I had to squirt into my throat quite well. I still won't know for sure that I am actually cured until I get re-tested in April, but I am very optimistic. Dr. Borody said he is most interested in this test. I am still fighting sinus and throat problems, but I can't help but wonder if my immune system will really ever be the same. I am just so grateful that I am not living in the bathroom anymore! [Guest Posted by: 'Carolyn']

Guest · Postby **Guest** » Fri Apr 19, 2002 11:41 pm

Hi guys, My toxin tests for A and B were negative. My culture was positive, but only with traces on nontoxgenic c-diff, and it took 3 days to culture it. Dr. Borody was pleased with these results, and felt the culture was insignificant. I no longer have diarrhea at all. For more details, I posted in my case history. I had my foot operated on, so am in pain and will talk more later. [Guest Posted by: 'Carolyn']

Guest · Postby **Guest** » Mon Jun 17, 2002 9:17 pm

Carolyn is doing just great gut-wise. I have been corresponding with her on the details of the home tx and she's really enjoying her "new" gut and eating all kinds of foods with no problems except for a small reaction to a medication (not antibiotics!) She's been very busy recently and that's why she hasn't posted. I'm sure she'll post an update as soon as she can. [Guest Posted by: 'Liz2']

Guest · Postby **Guest** » Wed Jul 03, 2002 2:44 am

Hi Liz2, I wanted to post a whole case history when I got a chance (and when I could tell for sure if it worked). So far it looks pretty good. I've gone for 20 days (including the treatment days) without any Vanco. Before that I've been on Flagyl/Vanco. almost non-stop since July 2001. The only regret I have is not doing this earlier! It's been a week since the last treatment day. It seems like I am back to normal, but for the past 2 days I had a little cramping. However, even if the spores try to take over again, I am sure that I am immensely better off after the treatment. Now I have a fighting chance. Before it was clear to me that I had no way to fight this. As soon as I would stop/reduce the Vanco. dose I would go downhill very rapidly. I am also hoping this treatment will give me enough good bacteria to reduce the chance to get C. Diff again in the future. The treatment was a lot easier than I thought. I had no problem retaining the stuff. We found a very good small private nursing company to help and they were great. I did 8 treatment days spread over 12 days. I bought the kit from Dr. Borody, but ended-up buying smaller enema bags locally (the ones in the kit have huge tubes/rectal tips that were too big for me). I can give you more details and tips if you want. It took a few days for us to come up with a system that worked nicely for us. If you want more details/tips email me at <a href="mailto:MX72@Yahoo.com">MX72@Yahoo.com</a> I encourage everybody who is tired of suffering from C. Diff. to try this (unless there is a medical reason why you can't). MX [Guest Posted by: 'MX']

Fecal Infusion (Tom Borody's Treatment)

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