Home Infusions

[Neng Friend]

I am reporting on my experience with fecal infusion. I have been a poster here for some months and have had multiple relapses of C-Diff for almost a year now. Other than the obvious need to get rid of C-Diff.....I also required a partial collectomy because I had diverticulitis....no surgeon would touch me while I was infected.

Up here near Boston, recurring C-Diff patients are using fecal infusion at home, to get rid of the beast. I performed 5 infusions with my husband as donor. I had a dramatic turn around after the 2nd infusion. C-Diff toxin is negative. I just recently had the partial colectomy, which went really, really well. The biopsy did not reveal any C-Diff. 20-30% of persons with recurring C-Diff, have an issue; their body will not recognize it as a threat, therefore, does not go after it. Introduction of healthy bacteria needs to be re-introduced. My GI (a Tufts Medical School Grad) and I are working with his patients that have recurrent C-Diff.....from 8 months to 2 years with the beast....all 5 are C-Diff free after 90 days......

If you have relapsed more than 2-3 times, using all the drugs, pulsing, probiotics, and anything else at your disposal...........you have nothing to lose by performing a fecal infusion with a healthy donor. They are easy to perform and cost less than $10.00 unlike......my VANCO bills (paid for by my BCBS), are greater than $12000.00.

Talk to your doctor about infusion. If they refuse to talk about it, find someone who will. I have compiled written instructions with the help of my doctor. I have been blessed finding such a forward thinking doctor......who by the way, had C-Diff himself from his daily exposure to it. How do you think he got rid of it????????????? Infusion!!!!!!...C-Diff gone..

There is a 95% chance that infusion will cure C-Diff... I will take those odds any day. So many doctor's out there have no idea what they are talking about.......and labs are famous for negative C-Diff tests due to mishandling.....Funny, all the private labs (in doctor's office buildings) where I first took my stool samples, all came back negative....all the tests done in hospital were positve. Stool samples for C-Diff toxin have to be performed within a small window of time....If your specimen sits in limbo for 5 hours.....chances are you will have a negative test result.......and of course your MD won't medicate you because your test came back negative......BIG MISTAKE!!!! I am so agrivated over the number of inexperience lab work employees.....low paid, low educated, low managed. Insist your test be done ASAP...and point out that stool specimens for C-Diff toxin have shelf lives......

I am not a doctor, or nurse. I am a 58 year old female survivor of C-Diff....which originated from a sinus infection, followed by diverticulis attacks.....I had so many antibiotics, it is no wonder that I contracted C-Diff.....All I wanted was to finally get well............and now I am.....thanks to a wonderful doctor and my husband (my donor)

If I can be of help to anyone that wishes to discuss infusion from someone who has done it, and now is C-Diff negative, you may contact my email address:
Nengfriend@yahoo.com.

[MaryT]

Neng friend,

I am surprised by your comment 'up here in Boston people are using fecal infusion'. I live in the Boston area, and Dr. Kelly at BI is one of the leading cdiff experts in the area, and I had not heard of an area doctor using infusion.

My doctor is treating me on symptoms, not test results as he feels I would never get a positive because he feels I have a very low level case at this point. I actually am not 100% convinced it's cdiff as I only get sick about once a week. I'm sure my doc would be interested to learn about another MD's in the area doing infusions. He treats a LOT of cdiff patients and he is very forward thinking as well...he was the person who gave me this site.

Interesting that your MD is at Tufts as well...the two MD's who developed Culturelle are from Tufts.

I'm sure you would have to check with the site administrators first, but perhaps your doctor be open to having his name posted on this site in the doctors section.

MaryT

[Neng Friend]

My MD works on symptoms also.....C-diff tests have a large margin for error. I am North of Boston on the North Shore. I must have missed your post and that you were also from Boston

The MD I am seeing alows the patient to perform the infusion (depending upon the patient) in home. He is an advocate of infusion in the appropriate circumstance. So far, our group has a 100% cure/remission rate....via infusion.

My GI is not with Tufts Health Plan, and does not work for Tufts, but is a graduate of Tufts in Medicine. ....just in case I was not clear. If you have a utility email (like yahoo.com) let me know and I will send you my GI's name and location....I will do this privately, because I would not place him on any message board without his permission.
email me directly: nengfriend@yahoo.com

Glad to hear there are other sources that believe that fecal infusion and perhaps vaccine may be the answer to this terrible infection.

Please let me hear from you.

[L.S.]

I am curious as to how the infusions are done at home. I've only heard of them done in hospital settings. Could you please explain? Thank you.

So glad to hear you're doing well. CONGRATS!!

PS. Is your Dr. aware of this website? I've been telling everyone I talk to about it. I think it's important to get sponsors for a site like this. Major Universities/Hospitals would be fantastic as it would drive more traffic here hence more awareness and attention.

[Neng Friend]

Thank you . Yes, my doctor knows about this website. Because he is so busy (but always attentive to his patients) He will tell his relapsing C-Diff patients to call me if they want to, so that I can tell them about the support groups. If they are interested in, or need a fecal infusion, I help them with instructions/support, etc., with the support of the doctor.

The infusions are a piece of cake. If you have changed a newborn diaper, or have a pet that had an accident (or you pickup after your animal in a park or on a street).......you can manage a fecal infusion. C-Diff with diverticulitis was nearly a death sentence for me.....no surgeon would touch me for partical colectomy, until the presence of C-Diff was gone....so, if you have the will, there is a way. I was lucky to have a husband who was very supportive, and a doctor that is one in a billion. My husband and I had a lot of laughs, especially when the blender blew up. Let me also put it another way. If you had terminal cancer and you could be cured quickly, inexpensively, no chemo, by a fecal infusion, you would most likely jump at the chance, regardless of how repulsive you thought it might be.

I did 5 infusions (one per week for 5 weeks) I could have done fewer, as I believe I was cured after the 1st or 2nd one. I was also pulsing down on Vanco and taking Florastor (probiotic)......My MD theory, was to bind a healthy donor's stool along with your own.....colonoscopies, etc., are too sterile. You need to use fresh stool within an hour or so.....this is very important.

Please contact me at nengfriend@yahoo.com for more details if you wish. There are many details people want to know......I coach on how to do this. I am not a doctor....mine works closely with me and the patients he refers.

I respect this website and its rules.........therefore, I will not publish instructions......and I need to make sure that anyone requiring a fecal infusion does so with the blessing of his/her physician.

Best wishes...

[whitepine]

Excellent advice and information, thank you. :)

[Bobbie]

Neng Friend,
Thx. for info. & for following rules of site & not listing protocol here as we agreed.

Am so glad it worked for you. It also worked for one of our original posters -- who is a nurse -- & for others. Please remember, however, that this site doesn't recomend or endorse any treatments. To repeat (for the 9000th time), this is not a medical site. To everyone: your own physician should OK (or at least be informed) of any treatment.

Since this forum is shorter & had less posts than the others, it won't "fall off the page" as readily. We will refer posters to Treatments - Home Infusions., and posters should ask questions in this forum.

[Dorothy]

I just wanted to chime in here, I 've been away from the boards for a while. I think I'm the original poster that Bobbie was referring to in the last post (Hi Bobbie!). I am an RN who contracted c-diff after taking Clindamycin IV during the birth of my 3rd child. I did the home infusions in June 2003 (with the support of my doctor) using my husband as donor and it worked perfectly. 10 years later I have had no problems and am healthy and c-diff free. I did take an antibiotic (z- pack) in 2004 for strep throat and did fine, but since then have not taken any antibiotics. I work hard to keep my immune system strong through diet and supplements and I have to say I rarely get sick, even though I work as a school nurse and am around illness all of the time. My heart still lurches just hearing the word "c-diff" as it was undeniably the worst thing I have ever gone through in my life. All I can say is DON'T GIVE UP, it is possible to be fully cured. I hope and pray that all of you will recover as I did and go on to live healthy lives.

[beth22]

Thanks for posting, Dorothy. It does give others some hope. Do you remember how many infusions you did? I ask because I had an FMT via colonoscopy, but it did not work 100% as I was not able to retain it. Did you feel that you were helped by your first infusion, or did you feel better and better with each one?

[Dorothy]

Hi Beth,
I felt better right away with the 1st infusion. Two things I remember very clearly were that after that first treatment I was hungry for the first time in months and the awful depression I had been feeling over the whole mess started to lift. I remember thinking that I had forgotten what it was like to feel "good" and it came back so strongly it was like a euphoria. I was so happy that summer to be alive and feeling well again. I felt like Dr Borody literally saved my life, and I will always be so grateful to him.

[Bobbie]

Hi, Dorothy,
I do remember you. Glad you are doing so well and thanks for posting.

I was free of C. diff. for 9 years. I won't go into details but had many medical problems since, including another round of C. diff. Currently, I have a upper resp. infection. Since it usually "turn into" pneumonia (6X since my original case in l993), I have an appointment with a doctor (ugh) tomorrow. I've had an FMT and also the home treatments. Great fun!!

I now have 3 grand kids. They live in the UK, and we went there last year (for the 9th) time to see our son and his companion (of 10 years) marry. We both came back with pneumonia. I think it's my last trip!

BTW, Lauren and Allison left the site some time ago but Nancy is still with us as a moderator. I'm sure you remember CindyM. She died last March of esophageal cancer. She never did recover completely from C. diff. Sad. MaryT hasn't posted in years.

Glad you are doing well. . I've been on this site for over l4 years and remember some of the earlier cases better than the later ones.

What supplements do you take to maintain your immune system? I've used Echinacea in the past (with good results) but my current GI does not believe in it.

Again, great to hear from you.

[seekinghelp]

Hi Dorothy and Neng friend-

I am also an RN and I got C diff after a round of clindamycin prescribed to treat mastitis. On my second round of Flagyl right now for a relapse, and my GI doc and I have decided FMT is a great treatment option for me. He hasn't had a lot of patients who have done home infusions though, and I'd rather do it at home than have the colonoscopy. He gave me the prep protocol they use in their office for infusion via colonoscope, and I have a home infusion protocol I've found online, but I tend to like lots of information. And, I want it to work! Would either of you be willing to send me the written up procedure you used at home? I see that you posted your email address several years ago, Neng Friend, but I don't know if that account's still active. I'm planning to do the infusion this week after this round of flagyl is done. I'd be much obliged if either of you could get back to me soon. I can message you my email address, or whatever... Thank you so much! So glad to have found this helpful community!