Carolyn P's Case History

Guest · Postby **Guest** » Sun Feb 24, 2002 6:52 pm

Carolyn's Case History I am a 44 year old female, live in California, and have battled C-diff and related problems for years. In 1978 I had my first round of pseudomembranous colitis (a severe form of C-diff) from Keflex for tonsillitis, and nearly died. I was hospitalized for about 7 days and believe I was treated with Flagyl. I recovered from the after effects of it over a period of about a year with a strict diet and Metamucil. I was left with Irritable Bowel Syndrome, which I controlled with Librax. In 1997 I had my second round of pseudomembranous colitis from Suprax for sinus infections. I nearly died again, and was hospitalized for about 5 days. I was treated with Vancomycin for 10 days. I recovered from the after effects of it over a period of about a year again, with a strict diet, Librax and Donnatal. No one told me I was at a very high rist of getting it again. In May of 1999, I had my third round of C-diff from a variety of antibiotics. They had me on Augmentin, Penicillin, Biaxin, Cipro, and Amoxicillin, so no one knows for sure which one did it. I was being treated for sinus infections and tonsilitis. I had my 4th tonsillectomy in July of 1999. They treated me with Flagyl from May 1999 to July 1999, with no relief and consistent positive C-diff test results. A week after my tonsillectomy I developed pseudomembranous colitis and was hospitalized for 6 days, nearly died again, then was treated with 10 days of Vancomycin. My C-diff tests came back negative, but I never recovered. Over the next 2 1/2 years I repeatedly went to my doctor with complaints of C-diff. (Sometime in 1999 I went on the internet, but found nothing helpful there.) My doctor did about 8 separate C-diff tests, all of which came out negative. I saw 3 different GI specialists. I had an upper-GI with small bowel follow-through, 2 colonoscopies, and 1 endoscopy, all of which were normal. All the GI's stated that they couldn't find anything wrong with me, that I had Irritable Bowel Syndrome, and tried 3 different anxiety drugs on me. When those didn't help they all said there was nothing more they could do for me. My primary care doctor did allow me to get about 20 codeine pills a month to control the diarrhea so I could go to church, the symphony, or just go out once in awhile. The Lomotil, Immodium, etc. no longer stopped the diarrhea by this point. In September 2001, I was getting sicker. I found out I had gotten food poisoning, but it had made my C-diff symptoms out of control. The codeine was no longer helping stop the diarrhea very well. I couldn't even walk our dog without developing severe cramps and running home to the toilet. I was becoming housebound. I was also waiting to see a GI specialist in San Francisco in October. I begged my primary doctor to prescribe Vancomycin, but he refused. In desperation, I again tried the internet. I had a new internet service which took me right to this site. I felt like I was dying, and everyone was so supportive. Through Francesca, I found some help. We found out we both live in Central California, and she gave me a number to call at UC Davis Research Medical Center where I could get my stool tested. I Federal Expressed my stool directly there, and found I tested positive in both the tests for culture and toxin. The researcher then called both my primary doctor and my most recent GI with these results. They agreed I needed Vancomycin. The GI in San Francisco also agreed with this. I also began taking Culturelle and Florastor. I printed out Dave F's pulse-dosing treatment with the Vancomycin, which I also found on this site. My GI used his regimen on me. It was a fight to get the insurance to pay for it, but finally got it covered. I knew that it wasn't curing me, but I was at least able to leave the house when I was taking it. By the time I was nearing the end of the regimen, all my symptoms were back on the days I did not take the Vancomycin. I was also getting weaker and sicker as each day went by. That is when I decided to e-mail Dr. Borody and try to do his enemas. I had been following David (from Australia, who is also on this site, and was willing to go forward with this course of treatment in my home. Dr. Borody gave me his clinic's phone number and Sharyn and Elaine from his clinic talked me through the procedures. Fortunately I called them soon enough to save enough Vancomycin from my pulse-dosing to do 5 days of treatment needed before proceeding with Dr. Borody's treatments. I did the enemas from Tuesday, February 12, 2002 through Thursday, February 21, 2002. I tolerated them well. I have had only one day with diarrhea since I began them. I believe this day was related to a stressful situation at home with my children. I am getting my strength back, have been able to leave the house to walk the dog, and can go to the store if I need or want to. Each day seems to be getting better. I'm even off the Culturelle and Florastor. I will know after 6 months for sure if I am cured. If for some reason my symptoms do come back, I can repeat the enemas after the 6 months have passed. In the meantime, I am enjoying each day I have of "freedom" and am so thankful to Dr. Borody, Sharyn and Elaine for all their help. I will update in the weeks and months to come.

Guest · Postby **Guest** » Tue Mar 05, 2002 8:21 pm

Hi, Update on my treatments. I am still doing ok. Only have had a couple of bouts of loose stools. Dr. Borody thinks they may be related to my IBS. He is most interested in my follow-up testing. I got to see an Infectious Disease Specialist at UC Davis Medical Center. He has an experimental procedure that I could consider down the line, but they are still testing it on hamsters! Fortunately he works with the same researcher Francesca referred me to last Fall. She will be re-testing me in April. I will know for sure at that time if I am rid of this disease.

Guest · Postby **Guest** » Tue Mar 05, 2002 8:24 pm

Forgot to add my e-mail: <a href="mailto:Serenaty77@msn.com">Serenaty77@msn.com</a> . Anyone who wants to ask me questions about the treatments, feel free to e-mail me.

Guest · Postby **Guest** » Fri Apr 19, 2002 11:34 pm

I sent my stool tests in, and they were negative for Toxin A and B and only traces of c-diff for the culture, which was a significant improvement over the lst testing. Dr. Borody said the culture was insignificant, and was pleased the toxin tests were negative. He will have me retested end of July, as this whole process usually takes 6 months to complete. I no longer have ANY diarrhea and am off the codeine and Donnatal completely. I eat whatever I want, with the exception of shellfish that Dr. Borody wants me to wait 6 months to eat. I feel really good, and even went ahead and had my lst foot operation, and will have the other foot done next month or end of July after our vacation. I will post if there are any changes, but I am optimistic that I have this disease beaten.

Guest · Postby **Guest** » Sat Aug 10, 2002 7:44 pm

It is now August 10, 2002 and I received the last c-diff test results from UC Davis Medical Center for my six month follow-up. I am toxin free and completely c-diff free. There were NO traces of c-diff for the culture in my tests this time. The researcher took 3 days for the initial report, then kept checking for 2 more days to be sure of the results. I am still feeling very good and can eat whatever I want. I had my second foot operation, but chose not to take any antibiotics for either surgery, and did fine.

Guest · Postby **Guest** » Thu Nov 28, 2002 1:39 pm

Update on my new email address. It is <a href="mailto:b.port@attbi.com">b.port@attbi.com</a> . Please feel free to contact me regarding Dr. Borody's treatments.

Guest · Postby **Guest** » Sun Jan 30, 2005 7:19 pm

Update on my health:

Guest · Postby **Guest** » Sun Jan 30, 2005 8:01 pm

In December 2002 I was hospitalzied with psedomembranous colitis again. No one knows for sure how I got it back, but the only thiing we could think of was that my husband, Bruce, and I both had gotten food poisoning. I was released from the hospital with a 2 week course of Vanco and then left sick for over 2 more years. I had repeated negative cdiff tests, but was near death many days with ALL the cdiff symptoms. My doctor finally told me that he could no longer help me sometime in 2003. I called every doctor on my insurance plan that was taking new patients, and given my history, no one wanted me. Bruce asked his doctor if he would take me, and he did. He did everything he could to try to make my life more comfortable, but couldn't cure me. In Summer 2004 I began getting spider bites. They were just house spiders, but I began having terrible reactions and infections from them on my neck arms and legs. I was hospitalized in March 2004 for staph infections nearly covering both of my arms and my right thumb. I also had pseudomembranous colitis again. I was in the hospital for 2 weeks on IV Vanco and some Fungal and other meds I barely remember getting. I also began getting Procrit for anemia, as my hemoglobin dropped down to 7.4. I now use Avon Skin So Soft Bug lotion and have not had any new bites. I put it all over my whole body twice daily, in the morning and after my shower. The IV meds cured the cdiff/pseudomembranous colitis and bites, but I now have incurable anemia, which is from the years of being left untreated for the colitis. Apparently I have had anemia since I first got sick in 1997, but none of my previous doctors mentioned it and my new doctor thought I knew about it. I also had very low calcium, and am on Calcium Lactate, a special calcium my blood doctor has me take, along with Procrit as needed. In August 2004 I had to have a hysterectomy. I got a severe bladder infection and was treated with an antibiotic. Immediately I got cdiff symptoms, but was sent home with severe diarrhea. I was re-hospitalized in September for dehydration and severe diarrhea. My new doctor was willing to prescribe Vanco without a positive cdiff test and I am now completely symptom free of the colitis. I have been left with severe pain my legs, and was on Procrit for the anemia. Some days I can barely get out of bed. It was a miracle that I got spider bites in order to get the IV Vanco, and the amount I needed to get cured of the pseudomembranous colitis. It was also a miracle that my doctor gave me Vanco afte the bladder antibiotic wihtout a positive cdiff test, or I would be back living on the toilet. I now have a new insurance and lost my wonderful doctor. The new insurance won't give me Procrit for my anemia and my new doctor won't give me Vanco without a positive cdiff test if I ever need another antibiotic. I NEVER test positive until it turns into the colitis, which by then it is too late for me to be cured by just Vanco. I was first cured by Dr. Borody, then by IV Vanco. Apparently I will be one of those people who will continue to get cdiff/colitis from time to time. My last doctor said I have a defective immune system, most likely caused by the cdiff that was left untreated for more than 2 years. I am cured again for now. I am getting through each day the best that I can. My anemia keeps me down most of the time. Without the Procrit I have no energy. I have tried every energy drink and probiotic and can't stomach them. I don't know anymore what my future will be, but I still believe in Dr. Borody and his treatments. I know without him I would have died by now.

Carolyn P's Case History

Who is online