Knitter's Case History

[Knitter]

Hi. I am diabetic and live in Ontario, Canada. I have Atypical Menieres which had me run down and not at my best. I had been to a specialist for the Menieres on June 9, 2005, and he had finally given me a diuretic to take plus potassium pills.

In mid June, 2005 I got a throat infection and had to have an antibiotic. It was Zithromax 250 mg. 4X daily. I was on it for 10 days.

By the last week of June, I had diarrhea and cramping so severe it took my breath away and at times I had to crawl to the bathroom. I went to several walk in clinics over the next few weeks because I had no way to get to my GP during the day. I was given such things as Imodium (to stop the diarrhea) Lomotil (to stop the diarrhea), Buscopan (for the cramps) and Novofloxacin (another antibiotic) 400 mg. to try to stop the diarrhea. By July 7th I was so sick I could not hold up my head. I was dehydrated. I was SICK. I went yet again to a walk in clinic in the evening and they recommended that I go to the ER at the local hospital. I was finally tested, although at the time I had no idea for what. It turned out when the tests came back on July 9th, the hospital called and said that I had C. Diff. and had had it for a couple of weeks at least. I was "a very very seriously ill woman" as my doctor described me when he phoned me on the Monday. The hospital put me on 10 days of Vancomycin 125 mg. My doctor doubled that dose to 250 mg. the following Tuesday when I saw him in his office and renewed the script for another ten days. Two days after that prescription was finished I was tested (at my doctor's insistence) for C. Diff. and the test came back negative. I had lost a total of 25 lbs. this time. I thought I was cured. How very wrong I was!

September 22nd I got the diarrhea and severe cramping. I went immediately to the doctor and had the C. Diff. test done, although the doctor said he was SURE it was not C. Diff. It turned out that the test was positive for C. Diff. I was started on another ten days of Vancomycin 250 mg. When that prescription was done, I still had diarrhea so the doctor renewed the script for another 10 days. I told the doctor about the web site I had visited that told of "titrating" the medicine in order to kill the spores as well as the adults. He told me to ignore web sites, that medical websites were all "crap". Two days after the medicine was finished I was tested for C. Diff. and the test came back negative. I had lost a total of 5 lbs. this time.

Within six days I had the diarrhea and severe cramping yet again. I was VERY sick. My doctor refused to believe I had C. Diff. again and told me my test had come back negative so I could not possibly have it again. He also "could not find time" to see me until the following Monday. On the Friday night before that appointment was supposed to happen I took quite ill and went to the local hospital ER. I had had 18 bowel movements that day, and had three more while I was at the hospital waiting to be seen by a doctor. Imagine HIS surprise when it was my GP who was on call at the hospital that evening, and so he HAD to see me before Monday after all. I was finally tested for C. Diff. again as I was sure that is what I had, but at this time he said I did not have it and ordered a barrium enema and an upper GI series done within the next five days. So far I had lost a total of 13 lbs. this time.

The test came back within a day and it was a definite positive for C. Diff. I had spent a wasted week, in pain and sickness, when I could have been on the Vanco. This is how I found out... I phoned the hospital ER on the Sunday night to see if they had my results yet and was told they were not supposed to tell me but that the test was definitely positive for C. Diff. I was given a phone number to call in the morning and told to ask to speak with the Infectious Disease Practitioner at the hospital. This was done because I had now had two documented cases of C. Diff. at the same hospital and one more at my doctor's office.

When I called the number in the morning, I was put through to a receptionist who made me an appointment to speak with a C. Diff. specialist (that is all I was told, I found out at the end of the appointment that she is the Head Microbiologist at the local hospital and one other hospital in the area) and to my surprise the appointment was on that same day. I gladly went to the appointment and she immediately put me on Vancomycin 500 mg. 4X daily for one week, then Vancomycin 250 mg. 4X daily for one week and then Vancomycin 3X daily for one week. I was also started on Florastor (Saccharomyces boulardi lyo) 250 mg. 3X daily to restore the "good" flora in my bowel. At the end of the third week I have to see her again for more prescriptions (November 28th) and for a follow up.

Finally I have someone who is really listening to me and trusting that at 50 years of age, I know my body and that I can tell THEM what I feel. This doctor, by the way, immediately cancelled the barrium enema and the upper GI, (I am so relieved) saying it would be too hard on an already overstressed bowel to put it through all that unnecessary testing. It also helped me that I had kept a journal of every appointment date, test and medicine I had throughout this whole nasty process. She knew I was serious about getting well again and treated me with respect and compassion.

The diarrhea and cramping have slowed completely down. I no longer need the Buscopan as the cramps are "tolerable".

This specialist thinks it may take up to six months to rid my body of these nasty spores and has agreed to treat me until I am completely well again (no matter how long that takes).

Just a note: I am not allowed to take the Menieres medicine while I am actively a C. Diff. patient because the diarrhea dehydrates me, so a diuretic is not wise. I do take the potassium pills. I cannot go to the Menieres specialist about problems I am having with that disease because I cannot do what he has told me to do (for now anyways).

Life is an endless circle of doctors and medicines and sickness.

[Knitter]

I am on week two of the Vanco regiment, which means I am taking 250 mg. 4 times daily and 250 mg. of Florastor 3 times daily as well.

I am very lethargic and can't seem to find the energy to do very much at all. My sleep is constantly interrupted by sweats, bad dreams or the alarm going off to take yet another pill (I take one every six hours, plus one Florastor an hour before each of those except the night time one).

I had an appetite for the first time today and really enjoyed some fried potatoes with onion, peppers and sausage mixed in. I am suffered like crazy now for it.

I dislike the taste of yogurt but I got some frozen yogurt today and am going to give that a try. It tastes just like ice cream to me. I am drinking gallons of bottled water, beef broth and Gatorade.

[Knitter]

I am on week three of the Vanco regiment. I now take 250 mg. three times a day (every six hours) as well as 250 mg. of Florastor one hour before each of those pills, and I SHOULD be sleeping through the night. However, the recurring insomnia is keeping me awake most nights, as well as the cramps in my tummy. I get the gurgling still and the bloated feeling. Although I do not get the diarrhea much since starting the Vanco (unless I eat or drink something that is not totally bland) I still get the cramping in my gutt. I am having the travelling pains. They usually settle in my right shoulder, but sometimes I have them elsewhere first. I have been trying to knit to keep my mind occupied but it is hard with the pains travelling throughout my body. I do not get the heart palpitations (thank goodness). I do, however, look as if I am about 20 years older than I was 6 months ago when this all started, and I am still a funny grey green colour in the face. I will be seeing the specialist Monday at 1 p.m. and will post the results of the visit that evening.

[Knitter]

I went to the specialist today. I am on Vanco 250 mg. every 8 hours now, so that is 3X daily. Florastor 250 mg. every 8 hours, something for heartburn and a multi-vitamin once a day. This will change in two weeks when I will change to Vanco 250 mg. twice a day and Florastor 250 mg. twice a day. The doctor said I could take the Florastor and the Vanco at the same time. I go back to see her again on December 28th at which time she is going to switch me to Vanco 125 mg. three times a day for a while, and continue with the Florastor 250 mg. twice daily, plus the multi-vitamin.

[Knitter]

As of Monday, I am down to 2 X 250 mg. Vanco daily and 2 X 250 mg. Florastor, a multi-vitamin and Pantoloc for the heartburn. I am experiencing more frequent bowel movements (#5). I am waking up after two hours of sleep drenched in sweat and burning up, but when I throw off the covers, within two minutes I am freezing. I still have very little energy and am exhausted all the time. Certain foods still cause me discomfort, however, the gas is not as bad as it was. I see the ID on December 28th for assessment and refills on my prescriptions.

[Knitter]

I saw the ID today. As of tomorrow I will be back up to 3 x 250 mg. of Vanco daily and the same with the Florastor. She feels I am relapsing while on the Vanco, NOT a good sign. She has given me six months worth of refills for my script for Vanco and then she will talk about tapering once that is done. I will be seeing her once a month until then. She also told me that if the diarrhea gets worse than it is right now, to come and see her immediately instead of waiting for my next appointment. I see her again January 30th and will update then.

[Knitter]

Month 9 of C. Diff. is upon me. I saw the specialist on January 30th. She gave me a script for 125 mg Vanco. She wanted me to drop the Florastor to two times a day for a week, and then on the following week I was to change to the 125 mg Vanco 3 times daily (and so the taper began). I did all of this as requested. Last week, which was week two of 125 mg, I started with c. diff. symptoms again. I had the pain, bloating, diarrhea and furry bm's. I also got the nasty headache again and the hair falling out more than usual. On Sunday, I started back on the 250 mg. Vanco once again. It is now slowing down, but I am not "back to normal" yet. I see the specialist on March 27th at noon and will discuss all this with her. For now I am listening to my body and doing what it tells me to do, as the doctor told me to.

[Knitter]

Major relapse going on right now. I have all the symptoms I had when first contracting C. Diff. I have contacted the ID, but I don't see her until March 27th unless it all becomes intolerable. A few weeks ago I tried to taper down to 125 mg. three times a day, as per the instructions of the ID. That did NOT work and I am back on 250 mg. three times daily now until I see her again. It is taking a while for my system to settle back down again. I am frustrated, but I will survive!

[Knitter]

Saw the ID on March 27th. She has me doing stool testing (one a day for three days) while I am on Vanco 250 mg three times daily. Then if the testing does not show C. Diff. she will be sending me to a GI who will be asked to do a colonoscopy. I asked her about the chance of getting back a false negative because I am on Vanco and she said "if the toxin is present it will show up, Vanco or no Vanco". I decided in order to give the testing a fair chance I would stop the Vanco and Florastor myself until after the stool tests are submitted, which will be tomorrow morning thank God. It's been a long weekend. I am having all the symptoms of a relapse, but the ID thinks it might be IBS and not C. Diff. She says she has NEVER had a patient last this long on Vanco with no positive results. I go to see her again April 10th and will update my file at that time for you.

[Knitter]

Soooo ... I had the joy of spending half an hour with the specialist today. No big shock that my test results were all negative.

I told her about pulsing and she said "it is just as effective as tapering, and that the tapering had not worked for me so pulsing probably woould not either". I told her about false negative test results if you are still on Vanco or have been off it for less than 7 - 10 days before testing and she said "if there is toxin present, it will show up on tests whether you are on meds or not". I asked her about a GI and testing for IBS and she agrees that this is the next step. She did NOT remove me from Vanco or Florastor, however I will now be taking 3 x 250 mg. one day, 3 x 125 mg. the next day, 3 x 250 mg. the next day, 3 x 125 mg. the next day, etc. for the next six weeks. She wanted me on 3 x 250 mg. for one week and then 3 x 125 mg. for one week, for a six week period, but I thought perhaps this would be a bit more like pulsing for my system and she agreed that I should try it my way for six weeks. I see her again the end of May.

The ID actually told me to consider going to Calgary for a Fecal Infusion. Calgary is in another province (three day's drive away from here) and is not covered by my medical plan, nor is it covered by the provincial health plan each person that is legally in Ontario is entitled to. Also, I do not have the money for a hotel or food or gas to get me that far.

The ID is letting me go to the GI that diagnosed me with IBS ten years ago, he's an hour's drive away but going to him is a good thing. Let me tell you why that is... this GI refers patients with recurring C. Diff. to a specialist at the University of Guelph. This doctor (I am told by the GI's receptionist) ONLY deals with patients with recurring C. Diff. Perhaps he will have or know of other options for me. We shall see! I have to go back to my family doctor to get the referral to the GI so that he can refer me to this doctor at the U of G, if that is what they decide to do with me. The ID seems to think this is IBS, but says that would not explain the (TMI) colour, odour, mucus, gas, bloating and pain, etc. that I experience with each relapse, or why I have had several positive tests for C. Diff. during these relapse time frames. They have never tested me for the kind of toxin it is so they have no idea if I have the more virulent strain of C. Diff. or just the plain or regular one. She says she has never yet had a patient that has not responded to her treatment after four full months of seeing her. She describes me as a challenge. She said quite frankly that she is unsure where to go next or what to do next for me. She says that this is such a "new disease" that there is not a lot known about it and that we are setting our own protocols with my case.

ALSO the ID says that if the spores were in my small intestine as well as the large intestine, the Vanco would treat that because it goes through both before it exits the body. She said it is a VERY VERY small percentage of patients that actually have C. Diff. in the small intestine. She did not mention how one finds out if the spores are in both or just the large intestine.

Onward I go. I have my appointment with the family doctor on Good Friday at noon, to beg for a referral to the GI. Wish me luck, I may need all the prayers I can get.

[Knitter]

I went to the family doctor today to get my referral to the GI, as ordered by my ID. In his infinite wisdom, the family doctor told me that he thinks I never did have C. Diff. although there are several positive tests documented. He says I just tested positive for C. Diff. toxin and not C. Diff. bacterium.

He says he disagrees totally with the ID and always has. He says he doesn't think I should have been on Vanco for 10 months. He says even though I am very allergic to Flagyl, that is the medicine I should have been on, and then the C. Diff. would have been gone months ago.

He has written orders for blood tests, an Upper GI and a Barium Enima done. At first he refused to let me see a GI and finally after I insisted several times he agreed to fax a referral to the GI of my choice (one I have dealt with in the past for IBS). He has written me a script for a medicine called Dicetel (100 mg.) for the IBS that he is sure I have always had. Has anyone heard of this medicine? I think I will wait to see the GI before I take this stuff.

I am to call the hospital and book the tests he has ordered. I asked him when he wanted me to get the blood tests and he said right away. I then told him I would not take the blood tests unless I was off medicine for at least 7 days and he said "so stop your Vanco then". I told him I have had several false negatives, two and four days after stopping Vanco (ordered by himself) and then the hospital, two days later, got a very positive test result of C. Diff. This is the one he denies was positive and claims he has no record of. This is also the test that the hospital told me was definitely positive and is the reason they ordered me to go see their ID. This is the second documented positive test result the hospital had for me in three months.

He told me that some people are just chronically ill and that I need to accept the fact that I am probably one of these people and will probably be ill for the rest of my life. I REFUSE to accept this crap (no pun intended).

Anyways, IF he did what he said he was going to do, the GI will already have my referral on his fax machine and I will contact his office Monday morning about going next week to see him.

I am tired of being a medical guinnea pig and more tired of a doctor that doesn't treat me with enough respect to accept that I know my own body. I am tired of being sick and hurting. I am tired of the Big D. I am tired of putting my life on hold for some damned bacterium! I am very very tired of being treated like this is all in my head and told him so. My exact words were "this is not in my head, it IS in my gut!!!" to which he replied "of course it is, certainly it is, but I still don't think it is C. Diff."

GRRRRRRRRR ... I was so angry when I left his office that I was shaking.

And this chapter of my life goes on........

[Knitter]

I am starting into my third week of taking Bio-K+. The ID took me off Vanco altogether and told me I could try the Bio-K+. She said if it came back, I would have to have infusions. No relapses yet. No problems so far, except first thing in the morning there is some urgency, oh yes and I made baked beans at the cottage the other day and the song IS right (beans, beans the musical fruit, the more you eat.... well, you know what I mean). I put the Bio-K+ into a Banana Smoothie and it tastes great. It has worked for me so far, and I hope it keeps on going (touch wood).

[Knitter]

Went to the GI today. I am having a Flexible Sigmoidoscopy on Monday morning at 7:45. Once that test is done, he will tell me if he thinks I have IBS, Post Infection Irritable Colitis Syndrome, C. Diff. or something else. He has asked me to stop the Dicetel as it is not stopping the cramping, and that is it's purpose. I will take Buscopan for the next few days if the cramping is severe. He told me to take Florastor. He does not know of Bio-K+ but said he wants me to still take the Florastor whether I take Bio-K+ or not. He says the Price Club has huge containers of Lactobacillus Acidophilus, enough of a supply for one month for $10.00+ taxes.

So I am doing the W & W game again, but this time it's with a doctor I know and trust. He is leaning towards this problem being PIICS and will treat me for it on Monday if all it pans out.

[Knitter]

Hi all:

The test I had done today (flexible sigmoidoscopy) has conclusively proven that I am finally C. Diff. free, according to the G.I., although he says it has not been long that I have been free of it. He says I now have a thing called Post Infectious Irritable Colitis Syndrome. He has given me Librax (Clidinium BR/Chordiaze 2.5/5 mg.) to take three times daily for the cramping and Metamucil once daily for the diarrhea. He gave me 90 Librax and 6 refills. He thinks this will get rid of the problems. He told me to keep on with the Bio-K+ for a while if I feel it is helping, but only 1/2 bottle daily as he said before, and to take Acidophilus as well. We shall see! I see him again in September for a follow up.

I had the test without sedation, but it wasn't too bad. I did not faint this time, but it was painful at times. I got to watch on the screen. He was very careful and explained everything to me as he went along. It only took about ten minutes.

Hopefully that's it for me for C. Diff. (note that I am keeping my fingers, legs, hair and anything else I can find crossed when I say this)!!!

[Knitter]

Well, I've been on the Librax for a week now, and other than being really really mellow, I've still had most of the same symptoms that I had before. The doctor has now ordered Metamucil (which I just can't tolerate) so I found a product called Benefiber, which is not gritty, totally taste free and can be put into any drink (hot or cold) or any food. I will try that for a few weeks and see if things get any better. I still have the urgency and frequency in the mornings, the cramping and bloating feeling, and the "not quite normal" stools.

Life goes on, I will keep you all posted!