help requested

[AmyO]

Hello. I have been struggling with a horrid C-DIFF infection since May 8. So far have had 7 days of flagyl, then 14 days of flagyl, then 14 days of vanco, now another 7 days of vanco. The vanco is being absorbed systemically and my white cell count is down. I am better, but a long way from well. has anyone heard of other drugs being used to treat this bug? Which Dr.'s in the KC area are the best resources? So far I have been using my family doctor. Thanks. Amy

[Nancy1]

Welcome to the group that no one wants to join. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you.

You are lucky to be in Kansas City, where there is a doc who knows a lot about cdiff. Check in the Doctors section for Dr. Allen. See the Treatment section for other drugs besides Flagyl and vanco used for cdiff. Pulsing vanco was what finally worked for me, after 8 months of cdiff. Other folks may post their experiences with other drugs. Good luck. Let us know how it goes.

[Bobbie]

AmyO,
I live in KC. Nancy is correct. I would see Dr. Mark Allen if your problems continue. He finally "cured" my C. diff. (after 4 yrs. - lst bout) with his "broth" treatment. (It didn't work the lst time; unfortunately, I listened to other docs. & didn't have it again until 3 yrs. later.) I had C. diff. again 2 yrs. later, & the "broth" cured me the lst time. Sometimes it has to be done several times. It's done through a endoscopy-- thus, often your insurance will cover most of the procedure.

Dr. Allen is a GI. Primary care docs. often are fine with responsive C. diff., but, in my opinion, it's best to consult a GI or ID if you don't respond.

[AmyO]

I have an appointment with a local GI, but it's not until the 5th of August. This whole mess started with a persistent sinus infection that would not go away. I still have that, and it's also in my ears and throat. So an ENT is on board now as well. I have been really sick!

Now my son has strep throat, and I'm scared I'll get that too. It's a challenge to not let my fears run away with me. But I am hanging in there and making it through one day at a time.

Thank you for replying to me. I will ask the GI if she has ever consulted with Dr. Allen. My primary care Doc started me on a supplemental product called "silverbiotics" which has made a lot of difference for me. I am not tolerating the vanco well tho, so am eager to find other options, just in case I have one of those cases of c-diff that simply refuses to leave! But am much, much better than when I first posted.

Take care and thanks again for being here and for this message board.

Amy

[gm37]

Amy,
I am so sorry that you are having so much trouble. I am in the same boat. I was very sick in the springtime and no one diagnosed me correctly. This is a stubborn disease so don't get discouraged. I am starting my third round of Vanco tomorrow.
I live in KC also. I go to a GI named Dr. Phillip Pattison. He has been very kind to me and so has his nurse, Barb.
Keep me posted about your care.
Anne

[AmyO]

Hi Anne, thank you for your words of encouragement. How are you feeling? The third round of vanco, are you doing 7 or 10 day rounds? The vanco is making me sick, so everything else is getting infected, then when I pulse off the vanco, everything gets a little better, than back to sick when I pulse on. So far I seem to have dodged my son's strep throat, for which I am very thankful. I'm really surprised that there is so little research/info about c-diff when it is such a horrid illness! My husband was reading about a drug called "opt-80" which is in the third phase of clinical trials. Hopefully that will give us all better relief. Take care and keep posting, it's good to not feel like I'm the only person in the world with this crummy problem!

Amy

[gm37]

Amy,
I am having a bad week. I have relapsed again and am back on vanco for 14 days and then 14 of pulsing. I love my dr. but I have made an appt with Dr. Mark Allen at St. Luke's just to see if I am doing all that I can.
I am usually very upbeat and positive. My son is home from MU for the summer and we have had a great time. When I was on the vanco/rifaximin, I felt great. We worked out at the fitness center every day. 12 days after coming off, I relapsed. I was quite disappointed. I have cried for the first time just from being frustrated with this whole mess. I admire all of the people on this site who are so positive. I repeat their comments to myself about how everyone beats this, it just takes time. You and I will do it, too. We will WIN.
My sister wants me to go to a Traditional Chinese Dr. and get some acupuncture. I don't really think it will help me with this problem, but maybe it would help me with the stress. I seem to be feeling more stress the longer it goes on.
Keep me posted. I will keep you in my prayers.
Anne

[Nancy1]

For dealing with stress, check out the info under Coping with Cdiff in the FAQ section. And see the Ten Commandments of Surviving Cdiff, also in FAQ, especially #7, about never giving up hope. I printed both out, and read them every day.

Cdiff is terribly stressful and depressing, because you never know how you will feel from one day to the next, sometimes from one minute to the next. I had to cancel so many plans that I began to think that I should never make any more plans. After several relapses, you start to think that maybe you will be chained to the toilet for the rest of your life. But you won't be. You will get your life back. As Anne says, you will WIN.

[AmyO]

Anne and Nancy, thank you both for your replies. I have cried a few times too, it did take me awhile. At first the mindset prevailed that after 7 - 10 days of treatment, I'd be all done and move on with my life. haha. now I've kind of gotten over that a little bit and realize this thing will carry on for awhile. There's nothing I can do about it! but that does not keep me from wishing for instant gratification in this matter.

The encouragement of we will WIN is very much appreciated, because there are days when not much victory is coming my way. My oldest brother told me to "be anxious for nothing," which was very comforting.

I have considered the accupuncture too, my daughter suggested it. but have not looked into it, and know nothing of the theories behind it. Guess I'm still pinning my hopes on the vanco/probiotics courses. The silverbiotics have been a real blessing, as they can be put into the sinuses and ears, helping to keep that area somewhat managed.

After the consult with the GI next week we should hopefully have a slightly clearer picture, if not, then I'll likely be looking up Dr. Allen too! Thanks for the heads up that he's at St. Lukes.

Is bleach the best/only thing recommended for cleaning at home? What about carpets? We've been laying a lot of stuff out in the sun so UV rays can help out, but there's only so much you can drag outside. yikes what a mess. It feels like good health will never return, so is very encouraging to hear it will. Thanks again!

Amy

[Nancy1]

I think bleach is the best. I used it in the bathroom, in the laundry, and in the kitchen. I never did anything special for carpets, but thankfully I never had an accident on the carpet (and I know some folks here did).

[AmyO]

that is reassurring about the carpets. Ours should be okay. How often did you bleach your bathrooms/kitchen/laundry? It's difficult to not go a little nuts here, because it feels like the spores could be lurking anywhere, just waiting to pounce. does the bleach kill the spores, or just the vegetative form? how in the world do hospitals become so contaminated, on curtains and such? sorry with all the questions, but it seems there are so many unknowns with this bug.

[Nancy1]

I bleached my bathroom every time I used the toilet, I used bleach and hot water in the laundry whenever I washed towels or washcloths (or any underwear that looked suspicious), and I bleached in the kitchen once a week. It is easy to be paranoid about such a nasty bug, but the most important hygiene precaution is to wash your hands long and often, while singing the happy birthday song.

You are right that there are so many unknowns with this bug, so I'm not sure of the answers to the rest of your questions.

[AmyO]

Thanks for the input Nancy, it is encouraging to hear from someone who has licked this nasty bug. The guidelines for cleaning are helpful, I'm willing to do whatever it takes to hopefully finish this thing some day. It's difficult tho, when I keep feeling so unbelievably ill all the time.

For hand washing, what temp of water worked best for you? The info says c-diff is not killed by heat, so is luke warm water okay? or does it even matter? It feels like no matter what we do here, this things just hang around, and many days it feels like it's getting worse.

Thank you for taking time to be here with me, it really helps with the lonely aspect of c-diff.

Anne, thank you for your prayers, you are in mine as well.

Amy

[Bobbie]

Amy,
Pls. don't take this wrong as I remember the anguish of being the mother of someone with C. diff. (in l979 when few knew anything about the disease) & as a C. diff. sufferer myself -- once for 4 yrs. (Don't panic -- extenuating circumstances). Both my son & I had C. diff. twice -- many years apart. I feel as though I've spent a good deal of my life trying to deal with the disease -- from a non-medical perspective.

Most of your questions are covered in the following intro. to the site (including handwashing).

Welcome to the site. Read the first forum ALL USERS READ THIS FIRST & its subtopics – especially the announcements: PLEASE READ BEFORE YOU POST and GUIDELINES FOR POSTING TO OUR DISCUSSION BOARDS. They will guide you in using the site & answer some of the most frequent questions. Read Dr. Borody’s & Dr. McDonald’s articles and some of the topics in FAQ – especially Hygiene, Nutrition, & Testing.

Let's hope you are one of the lucky ones who recover with one to two rounds of Flagyl or Vanco. If antibiotics contributed to your C. diff., be careful about taking them again. (See FAQ-Antibiotics.) Some people can tolerate them without a problem; some develop C. diff. again. (See Dr. Borody’s article.)

Pls. note the "Happy Birthday Song" in handwashing. (This was even on Oprah.)

I know you need reassurance. However, many of us had this disease when there wasn't a C. diff. support site, & after 8 yrs. of moderating this site, I'm tired & not as nice as Nancy. Many of your questions you will have to find out yourself -- either through the site or other research. We have few moderators & are volunteers. Several work & travel & both Nancy & I have aging parents who need a lot of attention. We all have our own problems. You are the most important person in your own recovery.

Best of luck to you. (Been there, done that, lived through it. You will, too.) Since you live in KC, I would call Dr. Allen's office. He saved my life -- twice. No promises, no guarantees, but he is one of the few C. diff. experts in relapsing/reocurring C. diff.

[AmyO]

Thanks Bobbie. I have already read through those things, but I think with the sinus infection, I'm just too foggy to retain much.

I am so grateful to those of you who blazed this trail, cannot even imagine how much harder it was for you.

I do not mean to be so needy, I realize everyone does have their own life. My parents have both been dead for over 20 years and my husband is completely disabled with MS. I admit to having feelings of panic, because there is no one here to help with things, and we have so much needing to be done.

Thank you for the encouragement of re-stating my c-diff will get better. I really need to hear that. Today it feels as if I am being eviscerated by it, so that makes it difficult to focus on much else.