Cindy M.--Case History

cindym · Postby **cindym** » Thu Jan 31, 2002 2:46 pm

July 2001 After emergency room visit and a misdiagnosis and then a 2 week wait to see gastro I was finally diagnosed with an abdominal abscess and hospitalized. Drains put in for abscess to drain. Had been on levaquin and flagyl for the 2 week wait and was given both as well as IV's in hospital. Released after 5 days with oral levaquin and flagyl. Either the abscess or flagyl (which I really suspect) totally had weakened me to the point of not being able to do anything for myself nor walk without passing out. August 2001 Drains from abscess were removed and developed infection. Given Cipro. Developed extreme pain on left side and diarrhea. Doctor called in another round of Flagyl. Made condition worse and diarrhea became debilitating. Back to hospital for 5 more days and put on vancomycin and IV's. Tested negative for cdiff. Thank goodness my doctor is knowledgeable enough to know this is not that uncommon and went ahead and put me on vancomycin. Got bronchitis in hospital and put on Tequin. Sent home on Tequin and Vanco. September 2001- Finished Tequin and continued on Vanco. Developed severe diarrhea five days later while still taking the vanco and put back in hospital. Gastro ordered colonoscopy and it showed absolutely NO SIGN of cdiff. Gastro ordered my doctor to stop all medicine immediately and get me back on solid food saying that I WAS CURED and no signs of disease of any kind in colon. Tested negative for cdiff. Released with no medicine and did fine for 5 days then suddenly RELAPSED. Tested positive upon hospitalization for cdiff. Doctors seemed amazed that colonoscopy could have been totally clean one week earlier. Put back on Vanco and IV's and released again in 5 days. October 2001- Took all Vanco and after 5 days total relapse AGAIN. Told I have the worst form of cdiff colitis. Tested positive for cdiff. Stayed in hospital 5 more days and released on Vanco for 2 weeks. During this 2 weeks developed pneumonia and put back on Tequin along with the Vanco. 5 days later BACK TO HOSPITAL. This time it is far worse and I almost died. Released from hospital this time on bacitracin and vancomycin. Took bacitracin 3 weeks and started having severe side effects and it was discontinued. Also put on probiotics. December 2001 Have continued to have severe sinus problems ever since this disease has started and it is a constant battle! Vancomycin dosage increased due to feeling like I was one pill away from relapse all the time. Urgency and left side pain incredibly bad. I also have kidney stones ( which are suppose to be small enough to pass) in both kidneys which are causing pain. January 2002 Doctor started tapering vanco which will be stopped very slowly over several months. I am definitely feeling better and hoping for the best. Praying it will soon be over! I also would like to say that I have had three doctors involved in this and out of the 3 only ONE doctor has done research and truly been wanting to help me and he is a surgeon. The others (gastro and infectious disease) just feel I am a freak and an EXCEPTION to the NORM and feel only time will take care of the problem. It has given me a whole NEW outlook on doctors. Had this surgeon turned his back on me I could have very well been dead today.The other doctor was non-responsive in view of the clear colonoscopy and his feeling I was over reacting to symptoms.My surgeon LISTENED and acted and SAVED MY LIFE. Everytime I was hospitalized my potassium level was extremely low and could have caused fatal results if not for the IV's with potassium.

cindym · Postby **cindym** » Thu Feb 14, 2002 2:50 pm

February 2002- Been sick for over a week and just went to doctor. I have severe throat infection which he thinks to be viral and thrush. Sinuses acting up as well. Eye trying to get infected and I wake up with it being matted. Determined to take NO ANTIBIOTIC. Cdiff doc reduced meds to 125mg 4X day. Doing well on that dosage.

cindym · Postby **cindym** » Mon Mar 25, 2002 11:44 pm

March 2002- Took 10 days Mycelex, 17 days diflucan and now nystatin fighting the thrush. Throat clear but tongue and lips still burning. Sinuses cleared totally and breathing better than I have since September since taking the diflucan. I am thinking it must be candidas causing the sinus problem if that is possible. Had another cat scan of abdomen due to nausea starting to start up again. It was clear. Doctor raised dosage back up to 250mgX4. Feeling very depressed at this point. However within 2 days of vanco being upped I have started to feel MUCH better again. Hope the thrush gives up SOON.

cindym · Postby **cindym** » Mon Aug 05, 2002 11:48 pm

August 2002- Now taking 125mgX4 and doing fine. Hoping to continue to reduce dosage and be off by October. Having problems finding drug and will start taking liquid vanco this month.Still plagued with thrush in my mouth after many rounds of nystatin and diflucan. Doctor says will probably have it until off vanco. After many months of extreme fatigue doctor did b-12 test and found that my b-12 was very low. Started on shots and feeling better than I have in a very long time. Having surgery ( lithotripsy) done on kidney on the 7th due to having kidney stone which has grown too large to pass. Depression is much better that I am now feeling better..hope it continues!

cindym · Postby **cindym** » Fri Aug 16, 2002 8:10 pm

August 2002- Had lithotripsy which went okay however made my stomach really start feeling bad. Relapsed 5 days later still on Vanco. Increased dosage back to 250X4..one doc says lithotripsy would not cause problems with intestines and other says it could. So who knows? Got back under control in 24 hours however still experiencing nausea and increased frequency. I am so sick of this! Just thinking I was getting better and ready to be off meds and wham here we go again. Still have another kidney stone in other kidney and require another surgery. Terrified to do it again!

Guest · Postby **Guest** » Tue Oct 22, 2002 11:54 pm

October 2002- Feeling so much better it is wonderful! Energy and stamina much better since starting the B12 shots. Have tapered back down to 250X3 and doing good. Have to have lithotripsy done in left kidney in November and shortly thereafter the doc plans on taking me totally off vanco again. Praying I will not get sick again. Planning to do infusions in the event I relapse this time. [Guest Posted by: 'Cindym']

Guest · Postby **Guest** » Thu Dec 26, 2002 11:54 pm

December 2002- Urologist decided to hold off on left kidney litho due to problems I had last time. Says they have not moved so I go back in March 2003. I have had one really bad period since Oct. and doctor says he thinks it was gastritis however upped the dosage of vanco back to 250X4. Had cat scan (showed nothing new) and have now gone back down to 250X3 and doing great. Starting to pulse vanco with a recipe recommended by a cdiff researcher.Feeling very good now and hope the pulsing works. Allergy shots have really helped sinus problems and b12 has been a life saver. Just hoping I can get off vanco soon as the search for it is really stressing me out!Thanks to support of many friends I have met on cdiff site I plan to do the fecal enemas if I do relapse. Having testing done on a couple of people to see if they qualify as donors. [Guest Posted by: 'Cindym']

Guest · Postby **Guest** » Tue Apr 29, 2003 10:13 pm

April 2003- Am now off vanco entirely and hoping that after pulsing I will not relapse. I found a new bacteria pill (primadolphilus reuteri by nature's way) that has made me feel almost like I did before cdiff! I am very hopeful at this point for the first time in 2 years! I can not believe the difference in the way I feel with the new bacteria after just taking it for a short period of time. My recipe for success (hopefully) was: 3 culturelle per day 3 reuteri per day for 3 weeks and now 2 per day 2 bifudus per day for 3 weeks and now 1 per day My plans if I do not relapse will be to continue the reuteri and culturelle at one each per day for the rest of my life after remaining on current dosage for at least 6 months.

Guest · Postby **Guest** » Mon Jun 30, 2003 11:54 am

July 2003- Still feeling great but having to take 1 capsule of vanco every 3 days or the diarrhea returns. The reuteri has made a world of difference in the way I feel. I am still trying to get totally off the vanco and hoping each time I try it will be the right time and successfully be able to stay off. Based on the way I feel...I should be over this! The only lingering problem is lowered stamina but it seems to be improving too.

Guest · Postby **Guest** » Fri Jan 30, 2004 11:11 pm

January 2004- I have pulsed every way known or thought about. I contacted researcher and used her method and it seems to be working somewhat. I still have to take two vanco capsules per week or experience mild relapse. I feel good and weight has stabilized (in fact put on 10 lbs) and having less severe fatigue now. Was sent to rheumatologist to rule out immunological diseases and was told everything was normal. Plan on stopping vanco totally in two weeks to see what happens again. It has now been over 2.5 years and one would think it would LEAVE! Still tire easily and lack energy some days but all in all 75% better. Just wish I could rid myself of the vanco dependency!

Guest · Postby **Guest** » Mon May 03, 2004 11:13 pm

Very frustrated at this point as my doctor just left on indefinite leave of absence and I have felt that he was my life line. Went to new doctor and he is not encouraging at all and telling me that I will not get well until something else comes along that will kill out the bacteria spores. His advise to me is to continue the lowest dosage of vanco that keeps me well with quality of life until new antibiotic is approved. Since I have talked to new company I know it is still 2 years away. Quality of life is good now if I stay with one capsule every 3 days but high cost of drug is killing me. Hope my doctor comes back soon...I miss him.

Guest · Postby **Guest** » Sun Aug 22, 2004 8:11 pm

August 2004- Found out that the abdominal abscess I had in 2001 was my appendix. Started having problems again and new doctor ran test to discover not only is my appendix still infected but I also have gallstones. Internist is hoping that maybe the cdiff is not what has kept me ill this entire time. However, he does not want to take me off the vanco until after I have surgery on the 24th. I am scared to death of the antibiotics more so than the surgery.

Guest · Postby **Guest** » Thu Feb 03, 2005 9:42 pm

January 2005- Had been pulsing and tapering since 3 weeks after surgery. On 1/24 started having massive diarrhea & vomited becoming very dehydrated very quickly. I immediately while trying to contact doctor upped dosage of the vanco. Doctor said horrible stomach virus is going around the town and he is not convinced that it might not have been that. However, I know it is a relapse due to having symptoms I wanted to ignore a week prior to complete relapse. I am back on vanco full time once again and very weak, dizzy and fatigued (which I always am on full dosage vanco). Diarrhea has stopped and I am stable once again. I am so exhausted by this disease at this point and totally upset with medical treatment or lack of it I should say. Will start pulsing again in 3 more weeks.

Guest · Postby **Guest** » Thu May 12, 2005 9:11 pm

May 2005- Have relapsed 3 times since January and highly frustrated. Unable to reduce dosage from 3 (250mg)per day without problem now. Definitely becoming resistant. Working toward doing infusions and gastro is trying to help me. Feeling bad most of the time now. Hoping to start on something new or have infusions very quickly. [Guest Posted by: 'cindym']

cindym · Postby **cindym** » Thu Sep 29, 2005 8:22 pm

September 2005- I have been through it! I felt I was totally becoming resistant in May and became frantic. My doctor contacted doctor in MN and his criteria for infusion would be me coming off vanco totally (which I have almost died the last 3 times I came off) and I refused. I was told to go back up in dosage to 2000 mg. of vanco per day for 14 days and then to reduce to one every other day. I did great after this and just now started having severe cramping (but no diarrhea). Pain was horrendous and non-stop so I was forced to go back on the vanco.....24 hours later I was pain free. Will stick to full dosage for 7-10 days and then go back down. I also have discovered during all of this I do better without so many probiotics. At some point I will get well......however, hope fades at times. I do feel I am beginning to kill the spores out or they are just getting tired of this ole body due to the way this last ordeal went.

Cindy M.--Case History

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