Dificid+Vanco=Success

[Karenna]

First, let me say a BIG thank you to all the contributors and moderators of this forum. My mother,age 74, was diagnosed with c diff in July. We didn't understand how difficult c diff could be to treat. After her first failed treatment with vanco, I found this forum and lurked here to learn everything I could about c diff and various treatments. Her second, longer treatment with vanco was also a failure. At this point she was referred up to a team of infectious disease specialists who prescribed Dificid followed by a long course of vanco. During this treatment, on some days I thought I saw symptom improvement and on other days I was certain that c diff was winning as the symptoms did not seem to be appreciably improving. The infectious disease nurse suggested we eliminate milk, cheese and eggs but add the yoghurt advertised by a certain Hollywood actress (JLC). This made a slight improvement. She has tested clear three times and had a sigmoidscopy to confirm through visual inspection that her colon looked healthy. Now a month later the symptoms have begun to improve. And dairy in small amounts is back on the menu.

C diff has left her with other health issues (broken ankle due to weakness and fall during emergency bathroom trip and recurrent UTIs due to weakened immune system) and it will be months before she returns to full strength. But she beat c diff and you can too!

Her go forward plan is to take a lactobacillus supplement each day, eat the aforementioned yoghurt from time to time and to ask for a protective dose of vanco or flagyl anytime she is prescribed an antibiotic. If c diff ever raises it's ugly head again, her ID team will recommend she go for the stool transplant.

This forum was tremendously helpful in helping us deal with c diff and make me feel like there were other people who understood the struggle and were winning the battle. So again, thank you. To those who are in the struggle, keep fighting and keep the faith.

[Bobbie]

Thanks, Karenna, for your wonderful post. This is why many of us "stick with the site." A "thank you" means a lot to us.

I'm so glad your mother is improving. I am 73 (two days ago - Happy Bday to me) and know how your mother is feeling. I, too, as well as others on this site, have recurrent UTI's. I am on 50 mg of Macrobid - which combats E. coli infections - but not those caused by other bacteria. I hope she is seeing a good uro. You might ask him/her about the Macrobid. Also, see CDI - UTI's.

I've had two broken bones - wrist and vertebra. C. diff. can weaken the bones through mal absorption. See is she can do some light exercise but do ask her doctor first, and a physical therapist might be helpful. I do aerobics, stretching, walking, and sometimes zumba so was appalled at my last bone density test but was sick all last winter with a form of colitis - which probably affected my bones. (Also have a history of osteo. in my family and have been on steroids for asthma.) I don't know if she is on a med. for osteoporosis (or if she has it). If you have questions about a medication I am on (that actually builds bones but can have nasty side effects), PM me.

Let's again for writing. Tell your mother hello from another "mature woman." She is fortunate to have such a caring daughter. Merry Xmas to both of you.

[getwellsoon]

Let me also add my thanks to you for coming back and letting us know what we do helps others. Its why we are here and all the Mods have battled CDiff or had a loved one who did so we know from what we are speaking. I'm so glad ;your Mom is better and lets hope she stays that way. Dificid cured me after over a year of relapses. Your plan is good also, it gives you a sense of control and helps you not to panic if you see symptoms returning. Thank you again for your kind words. Carol

[Karenna]

Ladies, thank you for your encouraging words. She has a long way to go, but she is very determined. Now if we could get that ankle to heal, she could really start with some desperately needed physical therapy.

[Bobbie]

Hope she is seeing a good orthopod. Ask for PT group that specializes in ankles - makes a difference.

Good luck to both of you. Keep us posted.

[Karenna]

Bobbie, I have a question for you about recurrent UTIs. My mom's urologist has suggested she go on a regimen of fosfomycin (Monurol) once every ten days to ward off UTIs. I know you said you take macrobid to ward off the UTIs. Do you take oral vanco as well to ward off c diff? Have you heard of anyone else using fosfomycin in this manner and what they did to protect against c diff?

Her recurrent UTIs are really getting out of control but a constant antibiotic scares me too.

Thanks for any insight.

[Bobbie]

Karenna,
I googled the antibiotic you mentioned - had never heard of it before. Didn't find much out except it can cause diarrhea - but any antibiotic can - and drug companies put every possible side effect down - to avoid a possible law suit.

I would do some more research on this drug on WebMD or the Mayo site. I'd also call several local pharmacists and ask about the drug. One important thing to ask is, "How long has it been out?" A pharmacist at Mayo told me years ago, "I don't care how much drug has been investigated. We don't really know all its side effects until it's been in the general populace for a year."

I don't take Vanco. with the Macrobid. It's worked well for me for years and treats most infections caused by E. coli. I had an infection caused by proteus mirabellus two years ago, and had to take ampicillin. After 9 years of being C. diff. free, I developed C. diff. again. I take the 50 mg. every day and also use the estrogen cream Estrace three times a week. Several on this site are allergic to Macrobid. I saw my uro the other day, and he said I was doing well - no bacteria in the urine sample. I forgot to ask about blood as I usually have it, too - IC. I also have a kidney stone. The "more the merrier."

There are quite a few women on this site who've had constant UTI's after C. diff. I am sure some will also comment.

Do some more research and ask a pharmacist if the patient insert with the drug mentions C. diff. I didn't see any mention of it but only checked several sites.

Interested in knowing more about this drug. Let us know.

[seekingcure]

Hi Karenna,
I also have suffered with recurrent UTI's since 1986, after I had my hysterectomy. For many years, I took Ceftin as a preventative, but after having c-diff, I needed to get on something less likely to cause a recurrence of c-diff. I had a rough time with UTI's during my c-diff, which contributed to me being on Vanco for almost six months, but I was finally able to get things under control and get off the Vanco. I have been off Vanco since the middle of November.

I also currently take Macrodantin 50 mg. at bedtime, as well as using the Estrace cream. If your mother is not using Estrace, talk with her urologist about that. It helps with the vag. atrophy that makes one more prone to UTI's. I don't take Vanco with the Macrodantin either. It is supposed to be one of the least likely antibiotics to cause c-diff and so far I seem to be doing fine with it. I do find that the Macrodantin works better for me if I take it along with 2 Ester C caplets. I believe I read somewhere that Vitamin C helps with the absorption, but I can't put my finger on that article right now. Macrodantin also is supposed to be absorbed better if taken with food and also is less likely to cause stomach upset.

As Bobbie said, the Macrodantin is only effective for e-coli bacteria, so if your mom's infections are caused by some other bacteria, that might be the reason her doctor is suggesting the other antibiotic. I have heard of Monural, but have never taken it. I googled it too to see what I could find out. How much of it is the doctor talking about having your mom use every ten days? According to what I read, it is a single-dose antibiotic, so I would think it would be rather potent. If he's talking about her taking a packet once every ten days, that seems to me it would be the equivalent of treating a UTI with a full course of antibiotics every ten days. I did see online that Monural can cause c-diff, but I think that warning is on pretty much any antibiotic now, even the ones that are less likely to. As Bobbie said, a pharmacist would probably be able to give you more information on this drug than anyone else: is it broad spectrum or narrow spectrum for one thing. A broad spectrum antibiotic would kill off more good bacteria than a narrow one. I suspect it's broad spectrum, whereas Macrodantin is narrow spectrum. I found the following info on Macrodantin: "Macrodantin is a narrow spectrum antibiotic that acts only on urinary pathogens. Rates of e-coli resistance to Macrodantin have remained at 5% or less over the past 15 years in spite of increasing use."

I also use D-mannose powder and Cystex liquid several times a day, as well as a Cranactin cranberry capsule twice a day. Whether the Macrobid would be enough on its own to prevent the UTI's for me I don't know yet, as I have not tried to get by without these other things. I've had so much trouble with the UTI's recently that I'm trying to cover all bases and maybe am doing a bit of "overkill," but it's been working for me. I haven't had a UTI since October.

I hope you can find something that works for your mom. These recurrent UTI's are a real problem and probably contributed to a lot of us getting c-diff in the first place. Let us know what you find out from the pharmacist and what the doctor decides to prescribe for her.

[Karenna]

Ladies, thank you for your replies. The research I've done on fosfomycin indicates that it is an older antibiotic that is coming back into use due to bacteria becoming more resistant to newer antibiotics. It is strong, with a single dose being a full treatment for a UTI and 3 doses being a full treatment for an especially stubborn UTI. My mother gets all types of UTIs and so I think this is a broad spectrum antibiotic. Right now she is in the hospital trying to get over another UTI and this one has done a real number on her mental state. For over a week now she has been talking out of her head. The doctors don't know why this isn't improving and it's scary to think this could be permanent. But the UTIs have got to be stopped and her urologist says this once every ten days dose of fosfomycin has been working for his patients with recurrent UTIs. I had him consult with her infectious disease specialist who says to continue the oral vanco during this treatment. I just hope her mental state improves soon. I'll update when the treatment gets underway.

[beth22]

My mom had recurrent UTIs last year and her mental state was affected too. She has some dementia, but this was way worse. After the UTI cleared, she went back to how she was prior. What finally helped her was using Estrace cream around the vaginal area - a little odd for her age (93), but it worked.

[seekingcure]

I'm so sorry to hear your mom is not doing well. I know it's distressing to see your mom in this shape. My mom is 94, not doing very well mentally and has become very docile, totally unlike herself. My sister and I looked at each other the last time we visited her and said, "I wish she were her old cantankerous self again." Your mom is very lucky to have you as her advocate. Sending prayers that she will start to improve soon. Let us know how she does on the fosfomycin.

[Bobbie]

Karenna,
I'm sorry to hear your mother is not doing well. I don't remember (altho I glanced back at your previous posts), has your mother ever been on Macrobid? (A few can't tolerate it.) Are her Uti'S caused by E. coli?

Memory problems and vagueness are indeed a sign of UTI's in older women.

I am 73 - one year younger than your mother and I drink water all day long. Is she getting enough fluids.

I know how frustrated you (and your mother) must feel. I don't know what to advice you except I'd go the Macrobid, Estrace, and water route first unless they haven't worked in the past. I would not allow her to take any antibiotic unless a culture has indicted the type of infection she has. You might not have a choice but to try the other antibiotic.

Good luck to you. Again, your mother is lucky to have you as her advocate. What I would give for a daughter like you!!!! (I have two sons - am not sure if they know what UTI is.)

Let us know what happens.

[Karenna]

My sweet mother passed away on March 19. Although she did not have c diff at the time of her death, I think it is fair to say that c diff started a terrible chain reaction of medical problems that resulted in her death.

[beth22]

I'm so sorry to hear this. Your mother was lucky to have a wonderful daughter like you that tried to be her advocate. Yes, c difficile can be particularly debilitating in older people. Again, I'm very sorry for your loss.

[Bobbie]

Karenna, we are so sorry. Even though your mother did not die of C. diff. I am sure it weakened her system. I lost my mom 5 years ago and still miss her everyday.

Our condolences. You are a wonderful daughter - cold comfort now, but it might help you recover.

Your mother is in a better place. There is a beautiful poem, "Do not weep for me, I am not here, I am in the wind and the sky." (Paraphrased.) This poem made me feel better when my mom died.

Again we are so sorry. Thank you for letting us know of her death. I'm glad the site was helpful. Keep in touch.