Finally, a REAL cure

[colleen]

Hello out there -

There is hope. This forum literally saved my life, by relaying a treatment that worked (fecal transfer).

Here's the short version:
-undiagnosed kidney stones
-recurring kidney infections due to this
-6 months of antibiotics
-diagnosis of stones and surgeries to remove
-prior to first surgery, noticed blood in stool - ER diagnosed c-diff

C-diff treatment:
-probiotics
-Flagyl (2 courses of unsuccessful treatment; 2 months)
-Vancocin (1.5 months of treatment)
-ER trip due to vomiting and diarrhea - every 5 min was throwing up or going the bathroom)
-Vancocin with Cholestyramine

Breaking point:
-After three months of "treatment", including changing diet, I was literally waking up every morning and crying just out of sheer physical exhaustion. I had a mental, physical and emotional collapse. The doctor I was seeing at the time, an infection specialist, was "ok" with my improvement ??? - which consisted of at least 10-12 bathroom trips a day (diarrhea). I was not satisfied with his treatment, found this forum, found a miracle.

WHAT ACTUALLY WORKS TO CURE C-DIFF:

Fecal transfer

My former doctor, and infection specialist told me that he sees people so desperate that they would literally drink sh**t if he gave it to them, never mind receive a fecal transfer. When I felt myself getting to that point (and I literally did), I knew that I would either die from this or find another way. Enter the woman who saved my life: Christina Surawicz MD; Professor of Medicine; Division of Gastroenterology; University of Washington.

One treatment, and I was cured. http://www.uwgi.org/Directory/Directory ... sonID=1001

[beth22]

That's great news. Did you have a colonoscopy transfer, or ng tube or upper endoscopy transfer or both?

[colleen]

Just one treatment... Like a colonoscopy. Twightlight sedation - then good as new ;-)

[colleen]

I felt I should post about my cure to c-diff after reading a statement about those who recover from C-diff. It read that many do come to these forums, find a solution, and don't come back to say that they are better. I know this place *literally* saved my life, so the least I can do is say so ;0)

[KateC]

Hi Colleen,

I'm so sorry for all you have been through, but so happy you are feeling better !
You brought a lump to my throat & tears to my eyed when you said you had a complete physical & emotional breakdown from exhaustion.
I have been to the pont where I wondered if that was what was happeneing to me also.

There's just no excuse that people are suffering and dying wiht this awful disease when such an easy cure is
right there under out butts-- pun intended !

How long did it take you to get an apointment for the transfer?
I have been referred to Dr. Brandt at Montefiore in NYC but he can't see me until July.
Just finished a long tapering Vanco dose & am scared to death.

Please do share more details about how you planned for this- cost, and also, was your having a low
white blood count a problem at all as far as them being willing to do the transfer.
My white count is down now also- about 3.7- not dangerously low, but low.

I pray you stay symptom free & enjoy the spring & summer to the fullest ; )
Kate C

[beth22]

I had a low white count and had the procedure anyway. It didn't matter.

[KateC]

Beth,
How low was your wbc ? And do you know if this is common with battling c diff?
See, I also have Lupus which can cause low wbc but my lupus is very stable-- all other labs are negative & have been for years.
But I'm afraid they will find this an excuse not to treat me & petrified I will die from this thing !

[beth22]

It varied and we don't know what it was from - maybe from the vanco, but could have been from the c diff I guess. It was 3100 once and I think 3400 and 3700 other times. But, then in between it would go back up. I tested negative for lupus, so that was not the reason for me. No one really knew the reason. For all I know, it could still be happening. I don't have it checked often. The doctor who checked, was the one who did my procedure and he didn't say anything about it as a reason not to do it. They usually do those procedures for people who are really sick and other things don't work, so I would think most of them would not be in good physical shape.

[KateC]

Thank you Beth- that makes me feel a little better...
4th day of no vanco & very nervous-- which my doc would have given me the Xifaxin.
Cramping & loose stools starting again after a few decent days.
If it keeps up by Monday will send a specimen... ugh..
Thanks God I have an "ongoing" script" and plenty of kits on hand.

[JenniferH]

I called your Doc, and left a message....I can't produce a positive result though. I know things aren't right with me, I know my body.
Thank you for posting this. I'll keep you updated if she calls back. Congrats on your recovery!!!

[rimbaud]

Colleen - thanks for posting, you're one of the lucky ones. I've been dealing with this since 2006. In 2007 I moved to WA, and in 2008 I tried to get an appointment with Dr. Surawicz. I spent a couple of weeks gathering all my medical records from various doctors to send to her office. After review, she decided not to see me and referred me to an intern! All I wanted was an appointment! I never went to see the intern.

At this point, my C diff has gotten so resistant/resilient that I doubt the procedure would work for me. The antibiotics do little anymore, so no prep is possible.

[beth22]

You could try a double procedure - upper and lower endoscopy infusion and then even follow up with the home infusions for a week to ten days. Dr. Borody's clinic used to recommend taking two antibiotics at the same time for a prep - vanco, Flagyl, Xifaxan - any two. I know most people only prep with one, but I read their guidelines and they used to have that. The problem is where to find a doctor who will do both upper and lower. If you want to pm me, I can send you some more info.

[Rose2xsurvivor]

Hi Colleen - I am glad to know you are cured. In your post, you said you'd be willing to drink "the mixture" if you had to. Unfortuantely, I had to drink it three times (as well as do a home fecal enema) because I couldn't get a physician to perform the fecal transplant timely enough and needed my husband's bacterial flora to reach the top of my intestines (not just the lower half which we were able to accomplish via the home enemas.) After two life threatening battles with C-Diff in 2001 and the second battle which I fought from November 2010 until August 2011, out of sheer desperation, my husband and I knew that I had no choice - I had to drink it to live.

Our desicion came only after I had been unsuccessful in scheduling the transplant in Pittsburgh. As for the out-of-state physican that finally agreed to perform the procedure in late August, my serious relapse occured a week prior to the scheduled fecal transplant. The doctor, however, wouldn't modify his schedule to accomodate my urgent needs.

The whole ordeal was incredibly frustrating and an outrage! I continue to think daily about others who are currently suffering and dying from this devasting infection.

[Kathy George]

Talk about complete desperation!!!! Absolutely deplorable and unforgivable that the doctors did not hear your plead. I’m glad it worked for you, but I absolutely would not recommend this method to our viewers/posters. Good luck to you!!!!

[Bobbie]

Rose, I'm glad you posted your story. As you said in your PM, "Oh, the stories we could tell."

I phoned one GI in the evening when I was very ill. (I had seen his associate, but this doc. was the one on call.) Dr. Dummy said, "If you have recurrent C. diff., I can't help you - and hung up on me." It took me 4 years to finally "get well" - after trips to Mayo and the U. of Michican Med. Center. Ironically, the doctor lives in KC - see Dr. Mark Allen, KC - the broth. The first time it didn't work; it did the second (3 years later) and again two years later when I had pneumonia again.

I did read one study where several people recovered after drinking the same mixture you did - it was in one of Scandavian countries - Sweden I think - but a small study.

I'm sorry you had to resort to this but glad it worked. I do agree with Kathy, however. We can't recommend any treatment to other posters - he/she should contact his/her own physician.

Congrats. on your recovery - twice - and please keep posting. Sorry about the TMI rules but they are necessary.