new to c diff

[HennyPenny68]

I was diagnosed about a month ago with c diff. I have had to take many courses of antibiotics over the last few years because of constant upper respiratory infections, mainly sinus. I think I had this c diff last year but never knew that's what it was and it wasn't severe enough to make me seek help for it and one day the "D" spontaneously stopped. I managed to stay away from antibiotics for about 6 months when over Christmas break I got a throat infection and started a z-pack. Almost within a few days I got the "D". I let it go for about 2 months because I had always had bouts with "D" off and on throughout my life so I thought it was my normal bout. But then I noticed it seemed to be making me feel weak and on top of it I felt my sinus infection was coming back so I didn't know what was causing what. Any way, my family doc ordered a stool test and it came back + for c diff toxin A and B. She started me on Flagyl and I could only handle it for about one week. It started making my upper abdomen hurt really bad and it wasn't make the "D" go away. Now she put me on Xifaxan. It seemed to help but so far I've only been on it for 1 week. Has anyone ever been treated with just Xifaxan before? I'm worried because my stools seem to be getting a little soft and close to "D" again. Also, does c diff do damage to your intestines without being symptomatic without you knowing it? Even before I got on medicine for it, I only went to the bathroom maybe 4 or 5 times a day. Now it's just every morning. This stuff is scary knowing what it can do to you. Does taking a zantac every make it harder to treat? I feel like I'm in a losing battle. Can't live with antibiotics and can't live without 'em. Also, is anyone taking allergy shots? Just wondering if taking those is going to affect my immune system with trying to fight the c diff as well. I've also been recently diagnosed with celiac disease so would love to talk to anyone who's got that as well. Thanks for this support group. It's wonderful!

Amy

[Bobbie]

Amy - HennyPenny68,
Welcome to the site. Read the first forum & its subtopics to help you get the most from the site as well as Dr. Borody's article Both Dr. Borody's & Dr. McDonald's articles will give you an overview of C. diff. FAQ contains various subtopics such as hygiene, nutrition, resp. infections (contains tips on sinus problems), and others.

I, too, have allergies and sinus problems. I've had 3 sinus surgeries. The last was a Godsend & decreased my need for antibiotics. (Surgery always carries a risk, however.) I am also prone to pneumonia. Be sure and get a pneumovax shot plus a flu shot. I live in an allergy-ridden climate (KC). Some climates are worse than others. Allergists help some; can't say they did much for me or my son. Everyone is different and has to try different things.

Some people can't take Flagyl because of its side effects. Many docs. try Vancocin as the next resort. It often works well, has fewer side effects, but is very expensive. Xifaxin is a newer treatment, but several of our posters have been on it, and I'm sure they will post you.

There was a study correlating acid reducers with C. diff. I am on a PPI (supposedly the worst offender) because I have acid reflux/hiatal hernia. When I first got C. diff. in l993, I wasn't on any meds. except an occasional antibiotic for sinus infections. The allergist prescribed Vantin -- rarely used now because of all the C. diff. it caused -- and I was finally hospitalized with the sinus infection, pneumonia, a UTI, and C. diff. I had C. diff. for 4 yrs. (extenuating circumstances) & sought help everwhere --- Mayo Clinic, the U. of Michigan Med. Center. I was finally "cured" by "the broth." See Doctors -- Dr. Mark Allen in KC. (Ironically where I live.) It failed the first time but worked the second time. Two years later I got C. diff. again after another bout with pneumonia and Levaquin. This time "the broth" worked the first time. At this point, it is only being done in KC, but Dr. Allen will advise other GI's how to perform it if you are not one of the lucky ones (about 20%) who don't respond to one or two rounds of treatment. There are also other new treatments "in the pipeline."

I recently got pneumonia for the 4th time and was forced to take a Zpak. Amagingly enough, although I am a prime candidiate for C. diff., I have not developed C. diff. although I am still on a PPI, & I've been off the Zpak 90 days. Go figure!! (I was not on a PPI either of the times I had C. diff. in the past.) I hadn't taken an antibiotic in six years (except Macrobid for UTI's - See FAQ-Antibiotics.)

If you aren't already seeing a GI, do consult one & ask him/her about the correlation with acid reducers. You do need to stay away from antibiotics - unless they are absolutely necessary. Sore throats aren't always bacterial; most are viral. Always demand any test (i.e. a strep test) that might help excluce an antibiotic. If you continue to have sinus problems, consult a good ENT.

Good luck. Keep us posted.

[HennyPenny68]

Thanks Bobbie! Sounds like you've had quite a battle as well. I've had numerous things against me as well. I didn't mention it earlier but I also don't have a spleen so that makes it harder for me to fight bacterial infections. I know I have another sinus infection already and have had it for awhile but am trying to keep it under control with the saline nasal wash. I went to see and ENT doc today and I hope I see a little light at the end of the tunnel as far as my sinuses go. He's recommending me for a study at their main office that involves a topical antibiotic that goes directly into the sinuses instead of having to disrupt the GI area. If I can enroll in it, I will even get paid to do the study! That's a switch, I get paid to go to the doc...hehe. Anyway I hope it works!

Amy

[Bobbie]

Amy,
Good luck. My ENT has prescribed Gentamycin several times as an irrigation -- it seems to help.

Yes, losing your spleen does leave you open to more infections.

What a switch - to get paid by docs.! Hope this new med. works. Some peds. are now prescribing antibiotic ear drops now for ear infections -- less absorption.

Let us know how you are doing.

[Sheila1]

HennyPenny,

You might ask your ENT doctor about the following sinus irrigation recipe, it's the same recipe that was given to me. Don't use it without consulting your doctor first:
___________________________________________________
From the Division of Allergy and Immunology at Scripps Clinics in La Jolla, CA. This solution can be made and stored in the refrigerator for up to 2 weeks.

"ENT Solution"
1/2 teaspoon salt
1/2 teaspoon baking soda
1 teaspoon white Karo syrup
1 pint warm water
____________________________________________________

I have been able (so far) to avoid sinus surgery and recurrent infections by taking 24-hr Claritin-D (with the decongestant) every day; but it doesn't work for everyone. I also use Flonase when the Claritin-D doesn't alleviate enough of the stuffiness. It seems the key, for me, to avoiding infection is to keep things draining.

Different things work for different people and it's 'trial and error' too, of course.

I did recently find out I'm very very low in IgG and IgE both of which can cause increased sinus and other 'mucous membrane' recurrent infections. Might check with your doc about getting your immunoglobulins checked and see if you're a candidate for IG treatments.

[HennyPenny68]

Well I guess I spoke too soon concerning the study for my sinuses. First of all I may not get to participate as long as I'm on the Xifaxan. Then if I do get to I have a 50/50 chance of receiving the actual med or a placebo. My luck it will be the placebo. I hate this!! I know I have a sinus infection already and it's not going away and I'm still being treated for the c diff. What's worse? Dying from c diff or a sinus infection? I try not to think negatively like that but sometimes I can't help it! I know I won't be able to avoid antibiotics and this c diff is horrible!

I'm not sure if my doc is as knowledgeable about this c diff. My family doc is treating me for it but I also have a GI doc for my celiac. I mentioned to her that I have the c diff and she says I need to take a stool test before I finish the xifaxan to make sure it's gone. I'm guessing it's going to be negative but it don't mean that I'll be rid of it. This is my second week of xifaxan. Is that the normal time of treatment, 2 weeks?

Amy

[Christina]

Yes, the "chaser" as they call it is two weeks of Vanco followed by 2 weeks of Xifaxan. I don't know what your dose is but mine was 1,200 mg/ day.

Good luck. I hope you have success with it.

[Bobbie]

HennyPenny,
Ask your ENT about the Gentamycin. It might help. I took it when I had C. diff. w/o a problem.

You are right -- you could be in the blind study for a new med. I was (S. boularidi - now called Florastore) & was on the placebo. However, they then put me on 2 yrs. of the "real stuff" as compassionate usage -- for free. Wish I could say it helped, but it didn't -- but has helped some.

Negative thinking is common with any chronic disease. Try to stop thinking about the "what if's?" & try to concentrate on the positives: When I am well. Difficult to do.

Good luck. Several on this site have had good luck with Xifaxin. Hope you do, too. In the meantime, ask your doc. about Gentamycin. It has little absorption & might help. Keep up with the saline irrigation. See other trips in FAQ-Resp. Infections.

[HennyPenny68]

My doc's office called today and said my sample came back negative and that when I'm finished with this course of xifaxan I don't need another refill. I'm praying that they're right and that it doesn't come back which I've read that a lot of you thought you were in the clear until a few weeks or even months later it came back. Today is my last day of xifaxan so if I can make it a few weeks I'll feel a little more at ease.

Thanks Bobbie for the Gentamycin suggestion for my sinus infection. I haven't heard yet if I'll be able to participate in the chronic sinusitis trial but it sounded like it might be because of taking xifaxan but I'll be off of it tomorrow. My only concern is that if the c diff comes back during the trial then I don't know what to do. Anyway if I can't do the trial then I need to get help for my sinuses because that alone can make a person feel lousy but I know that whatever I do I don't want to take an oral antibiotic and risk this c diff stuff again. Right now the sinus irrigation has helped me get through so far so anyone with sinus trouble definitely needs to do that! Thanks to all who posted a reply to me. It's nice to know there are a lot of caring people out there!

Amy