Lori's Case History
updates at the bottom (11-2-99)
I am a 26 year old female, live in Washington state and was in normally good health before I contracted clostridium difficile. I have never had c-diff before this year. I am posting my case history on December 13, 1998. I have had the condition since April, 1998.
In April, 1998, I vacationed in Cabo and La Paz, Mexico in Baja for about a week. While there, I came down with a common stomach illness that many people get while vacationing in foreign countries. My symptoms were bloating, cramping and excessive gas. Diarrhea was not one of those symptoms.
When I got back home, I went to an urgency care clinic to take care of my traveller's illness. The doctor said it was either a bacteria or parasite (he wasn't sure). He didn't do a test to exact his diagnosis. Instead, he just gave me two antibiotics: metronidazole (flagyl) and ciproflaxin. He said that both of those would take care of either problem. Four days before I finished both medications, I developed severe diarrhea. I called the doctor and they told me to go ahead and finish the medication.
I was skeptical and wanted a second opinion from another doctor, since I developed worse and different symptoms. In addition, I was unimpressed that the first doctor didn’t really know what I had in the first place.
I went to see another doctor that my husband had been to and was pleased with. He ordered a lab-tested stool sample (which the first doctor should have in the first place). It came back as positive for Clostridium Difficile Toxin. The first doctor's prescription of two antibiotics was too much for me and gave me the c-diff illness. I feel that had he done a test in the first visit, none of this would have happened.
Amazingly, the second doctor prescribed that same medicine (metronidazole) to me in an effort to combat the C-dif – at 1500mg a day! My husband and I both questioned his decision to prescribe this medicine again, which was originally at least partially responsible for making me ill with the C-dif. He also prescribed an anti-diarrhea medicine called diphenoxylate/Atropine. I later discovered on the internet that prescribing diphenoxylate/Atropine to patients with C-dif can inhibit the body’s ability to rid itself of toxins and actually worsen the condition.
I went ahead and took the metronidazole as the second doctor prescribed. Five days into my course of metronidazole, I became violently ill with a fever, hot & cold chills, body aches, worse diarrhea, and nausea with vomiting. I thought I was going to die. I could not keep food or liquid down at all. We called the second doctor's office. He was not available and his nurse rudely told me that "she knows that the medicine may make me a little nauseous, but that I must finish the whole course and there was nothing they could do." I was more than a little nauseous. I took the metro one more day and then called the office again because I got worse. This time I asked to see a different doctor. A third opinion! The third time has got to be a charm – so we thought.
I saw the third doctor. He ordered a stool sample done and immediately pulled me off the metro and the diphenoxylate/Atropine. My doctor was very surprised to see that the second doctor had prescribed the metro. I thought prescribing metro was ironic, but we trusted the second doctor's judgment.
The third doctor then prescribed what was only to be used as a last resort in fighting C-dif and was sure to work: Vancomycin. We were relieved that this "super-antibiotic" (which cost $603 for 9-day dosage) was going to surely work. This was in a liquid form. I felt better after 4 days. Then I finished 5 more days and thought c-diff was gone. I had a stool sample done and it confirmed I was free of C-dif toxin. (Apparently the spores were still there - but they are not detectible with a stool sample test)
Thinking that I had been cured, I wrote a letter to the first doctor. He responded shortly after with a phone call. He admitted doing nothing unusual or wrong in his procedures in causing me to contract c-diff.
15 days after I finished the liquid vancomycin, my symptoms came back. My husband called and left a message with third doctor's nurse that I wanted to be referred immediately to a gastroenterologist specialist. My answer came from the nurse that the doctor had refused my request. She gave no reason for the refusal. I called other specialists in town, but they wanted a referral. A specialist in Portland couldn’t take me until two weeks later. So, we decided to give the current (third doctor) another chance at curing me – since he was so confident that he would refuse to refer me to a specialist. Instead of arguing with him, we faxed him a questionnaire to see what he really knew about C-dif. By this time, we had been all over the internet and thought we knew more about it than him. He called shortly after and beat around the bush. He didn’t answer much. I should have done something then, but we tried hard to trust this 3rd doctor’s opinion.
The doctor put me back on the Vancomycin for 14 days (16 pills a day! At $1087). We used the credit card to pay for the medicine again. We don’t have that kind of money. In two weeks the insurance company would reimburse us for 80%. I finished the course of Vancomycin and we kept our fingers crossed and had people praying for me.
Eleven days later, it was back. I was really upset and worried - and so was my husband. I called and had the nurse set up a stool sample kit at the hospital again. We dropped off the sample again. My husband was furious that the doctor had not referred me to a specialist - like we asked before. So we called his office, polite but firmly, and demanded to talk to the doctor. When I told him I was sick again, he said he had not heard about it. Evidently, his nurse did not tell him. Nice – Huh? He was at a loss of words. He didn’t know the answers to any questions about side effects of taking Vancomycin for any period of time. He didn’t even know if the C-dif could build a resistance to the Vancomycin antibiotic. Finally he said, "Maybe we should get you in to see a specialist." He also recommended getting me back on the Vancomycin for now – since that was all he knew to do for this thing. I knew that this doctor had given up. His ego was not powerful enough to cure me after all. He ordered me a third prescription for 28 days of Vancomycin!
The third doctor sent me to a gastroenterologist in Portland. We went in to the specialist on July 23rd. He answered all the questions that the other 3 doctors could not. He performed a colonoscopy to confirm the amount of damage and presence of the C-difficile. It was confirmed I had it – but he didn’t say what the extent of the damage was. He kept me on Vancomycin, but reduced my dosage from the 16 pills a day (2,000mg) that the third doctor had me on, down to 4 pills a day (500mg). He gave me a plan of dosage that would last 7 weeks – but would taper off gradually. He said that the dosage prescribed by the third doctor was not necessary (it was too high). Furthermore, we learned that vancomycin is under strict regulations concerning dosages and the original 16 pill a day plan is now illegal. The reasoning is the emergence of vancomycin-resistance enterococci (VRE). That just means that the bacteria has mutated and is not affected by the treatment using vancomycin. This is very rare and there have only been a few cases known.
It is now December, 1998 and I have been sick for 8 months. Since I was diagnosed with the c-diff, I have been on 1 course of metronidazole(Flagyl) and now on my 5th course of vancomycin, paired with my 2nd course of rifampin. I am on a tapered dosage that will probably last 3-4 months. I am scheduled to see the specialist in 3 months for a follow-up.
My symptoms caused by the c-diff are gone while I am on the vanco and rifampin, but I believe that I have new side affects possibly associated with the rifampin. We are not sure, but before I took the rifampin I had none like them. Those side affects appear to be: Irregular menstrual cycles, bloating, joint pain (similar to arthritis) and more frequent (monthly),stubborn yeast infections.
I tried using acidophilus after finishing my fourth dose of vanco. But it came back anyway. My doctor has never suggested staying away from certain foods. He has never promoted any alternative medicine either. He is confident that just taking the vanco and rifampin will eventually outlast the c-diff and allow the spores to leave my body.
I am still on the vanco and rifampin as directed by my gastroenterologist. I am down to taking the vanco 2x a day and taking a rifampin pill every Monday and Friday. Yesterday had an appointment to a Naturopathic doctor. She was very helpful in trying to explain that I may have had poor intestinal health prior to my contracting of c-diff. She started by showing the difference between a healthy intestine and a not-so-healthy intestine and how the unhealthy intestine lets certain toxins and bacteria (c-diff) "stick" themselves in the intestines.
She started me off on a special diet this week. Next week I will go back and get more good stuff added to my diet. Because I am still on the vanco and rifampin, she is first going to get my diet healthy in order to help cleanse my system of toxins produced from an unhealthy digestive system. She used the term "dysbiosis" which just is an overall term for my unhealthy system and intestinal flora. Right now, I am restricted from these foods: Milk / dairy products, breads (containing yeast and gluten), refined sugar, alcohol, caffeine, excess sugar, beef and pork, and to avoid canned, boxed or processed foods (instant and easy to cook stuff with weird preservatives and long non-foodlike names on the labels).
I am eating all my food from a health food store called Nature's. Their food is all organic. They have no added antibiotics in their meat, no pesticides in their fruit or vegetables, no hormones. Those chemicals are toxins and contribute to an unhealthy flora in the intestine. The organic stuff actually tastes better! I am basically eating chicken, quinoa ("keen-wa" - which is cooked like oatmeal), brown rice, rice -or- soy milk, clear vegetable based broth soups, beans, lots of fruit & vegetables, salads, plain yogurt with acidophilus and bifidobacterium in it and very low sugar. If I eat the fruity yogurt, I only eat until I reach the top of the fruit (to avoid all the sugar). I use only raw honey (in substitute for sugar) in sparingly amounts. Drink at least 2 quarts of water a day.
Basically, we are avoiding yeast (which thrives in the absence of good bacteria) which may be causing my frequent yeast infections. Also avoiding most refined sugars, carbs, milk products which the bad bacteria thrive on right now due to the absence of good bacteria. We are adding more fiber and water in my diet to help cleanse. After a few weeks of a modified diet, we will add a special acidophilus which she will recommend. The Naturopathic doctor said that many name brand acidophilus were tested and either did not contain any live acidophilus or only had a shelf life while in the manufacturing plant. She said to only purchase refrigerated kinds and to get one that a N.D. recommends. When we find out the brand - we will post it here and on the main page.
My first visit was $94 and after our yearly deductible, will be reimbursed at 70%. I am to go back in to add more stuff back into my diet. She said I will get to eat non-yeast bread products (made with rice flower and arrowroot). Yay.
I feel much better after being on the modified diet for the last 11 days. I am still taking the Vancomycin and Rifampin - so I don't know if the c-diff is gone. I won't know until I stop taking them. I have basically been c-diff symptom free with the vanco. But, I could still have the c-diff spores in me waiting to pop-up at the opportunity without the vanco.
I saw the N.D. again on Wednesday. She reviewed my diet from the previous week and said I was doing good with it. She wrote up a plan to wean me off the antibiotics and put me on various supplements. I am scared to come off of the Vancomycin and Rifampin. Every time before - c-diff has come back!
Before I tell you about all the stuff that she has recommended to me - I have to let you know that I am not trying to promote any of these products - I am just letting you know what they told me so that you can gain knowledge about some things you can do. She also showed me a cookbook that has all organic recipes for people who are on a modified diet. This book is great! I have been able to eat great, normal dinners again by using all organic and safe ingredients and spices. The recipes are wheat-free, dairy-free, yeast-free and most are cholesterol-free.It was $25 and is called "Guilt-Free Indulgence" by Dr. Mark and Cheri Percival (published by IPS/Health Coach 1-800-348-1549). It took over 2 hours, but I made a healthy gourmet meal for my husband and I and he loved it.
Here is the plan that she has for me:
1. Stop taking the Rifampin (have been on it for 3 months already).
2. Taper off the Vancomycin every couple days until I am off of it totally on January 28th.
3. Immediately start supplements listed below to build up colon health and intestinal flora.
Here is what she has me taking:
1. UltraInflamX™ (from Metagenics/Ultrabalance, Gig Harbor, WA - 800.692.9400 www.metagenics.com ): a vegetarian supplement powder drink which is "designed for nutritional support of patients who have chronic inflammatory conditions of the lungs, joints and intestinal tract." Supposed to help reduce irritation of the colon and provide nutrients without irritation to the intestinal tract.
2. Mycostat (from Professional Complementary Health Formulas, Portland, OR): aids in the control of intestinal yeast and fungal overgrowth. It has essential vitamins, minerals and acids. It is supposed to help reduce yeast infections.
3. Culturelle™ with Lactobacillus GG 80mg (distributed by ConAgra www.culturelle.com ): maintains and builds healthy bacteria. 40 billion live/active bacteria. Compare to acidophilus. Taking one pill a day.
4. RF Plus (NF Formulas, Inc., Wilsonville, OR): Herbal digestive demucents.
Remember, I am under the care of a certified and trained Naturopathic Doctor who prescribed these supplements. If you consider taking any of these - please go see an N.D. first to get guidance. Our insurance is paying 70% of our visits - but does not cover supplements. You may want to check your insurance company's policy to see if they cover your visits to a N.D.
We have paid about $300 so far out of our pockets to cover 2 visits to the N.D. plus supplements. Partly because we had to meet our deductable for the year. We had never seen a Naturopathic Doctor before, so we are just now experimenting with it because our regular doctors have not been able to stop the c-diff and just keep giving me pills. I feel that the money spent with the N.D. was worth it. She has shown me a healthy lifestyle rather than just given me antibiotics (which is the cause of c-diff in the first place). I hope this works! It's our last idea!
Well, I have been off vancomycin and rifampin since January 28th. I feel very good and have had no symptoms as of today's date. I am still on the above supplements prescribed by the Naturopathic Doctor. I get to go out to dinner (being selective on the menu of course) on Valentine's day tomorrow. I am cautiously optimistic about my progress and hope that this is the end of c-diff for now. I will continue to update if anything changes or if I stay asymptomatic for a couple more weeks.
I have not had a recurrence of the c-diff (knock on wood!) and have been symptom free for over a month now. I hope it's over. I still take the supplements (no medication) and see the Naturopath every two to three weeks. The biggest change in my life has been the way that I cook and the way that I eat now. I am following all of the Naturopathic Doctor's recommendations and us the cookbook I bought from her to eat right. Good luck to all of you, I beat c-diff (knock on wood again!) in about 10 months!
I have spoken too soon. Believe it or not, my husband and I vacationed in La Paz, Mexico. Two days after I got there - I came down with an illness in the middle of the night. I have severe stomach cramps, vomiting, hot and cold flashes and diarrhea. The next day I slept all day and the day after I was much better. We decided to leave the following day and get home just in case I was not better. Just as I thought I was getting over it, I got extreme bloating, gas and stomach cramps - just like I did in April of 98 (right after visiting Mexico). Today I have an appointment with a regular doctor to get a stool sample and lab test done. My husband's parents are retired and live in Mexico - but I probably will not visit Mexico again. It is not worth the risk. I will update again as soon as I find out what I have for sure. Hopefully it is not c-diff. Hopefully I won't have to go back on antibiotics, as I will surely have a relapse if I do.
I had a lab test done and it came out negative. I was scared that c-diff was back. I don't know what I had - but I immediately went on "health alert" and started popping acidophilus and eating the way my N.D. told me to. I am feeling much better - but I feel like there is a knot in my stomach all the time.
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