Flagyl 500 mg 3 times a day for 3 WEEKS?!

[Dakzee]

Hi, I'm new.

I got c diff from taking too many antibiotics due to an infected salivary gland (which I'm now having removed). I think I had c-diff for about 3 weeks before I realized it because my symptoms were mild (possibly due to my pain pill prescription 1-2 10/325 hydrocodone per day.

My doctor first treated me with Flagyl 500 mg 3 x daily for 10 days. My mild symptoms haven't gone away, so I was retested and came back positive. Now my doctor is prescribing the same round of Flagyl but for 3 weeks. I can't see anywhere that this is typically done for this long. I'm worried about the side effects AND I'm having surgery to remove my salivary gland in 4 days and then they're going to put me on antibiotics AGAIN so I don't get an infection.

I feel like I'm getting bad advice and no one is looking out for me. My doctor didn't have any advice for me but that I should take Imodium (which I think is a horrible idea).They said I should be retested after 3 weeks, and then if it wasn't gone my doctor would refer me to a GI doctor. Is a GI specialist the correct doctor to be referred to?

I think I need to see an infectious disease doctor asap. I don't want to wait until I'm so sick that I need my colon removed!

I'm going to call my doctor tomorrow, or my insurance company - I'd like to go to John's Hopkins and get some quality care. However it would be nice to get that care where I live instead ...

I live in central PA, and wish I lived in Boston again as I'd go to MGH to get their new pill.

Any advice?

A tad freaked out by all of this,

Cris

[beth22]

STANDARD INTRODUCTION:
Welcome to the site. Read the first forum “All Users Read This First” and subtopics “Site History” and “Information and Guidelines for Posting to our Discussion Boards.” (Note limits on posting.) This will guide you in using the site and answer some of your questions. Read Dr. Borody's articles. Also see the topics under “CDI” – particularly Recent CDC Report, The C. diff. Bible, Tests, Antibiotics, Hygiene, and Nutrition.

“Doctors” lists physicians our posters recommended and also a list of C. diff. specialists throughout the world with contact information. (Many perform FMT's.) See the new forum “FMT’s and FE’s” or “Media Reports” for new information on C. diff.

The majority of patients (about 70%) recover with one to two rounds of Flagyl or Vancocin. An unfortunate small percentage doesn’t and can suffer for months. Most recover unless there are factors such as advanced age or other severe health problems. New treatments include FMT's, which have a high cure rate, and Dificid. Other drugs and treatments are in the pipeline, and there is increased recognition of C. diff. You can help by educating your family, friends, neighbors, and co-workers. Help us make others aware of C. difficle – which will lead to further advances in treating and/or preventing the infection. If antibiotics contributed to your C. diff, be careful about taking them again. Some people tolerate them; some develop C. diff again. Don’t take medications for C. diff. unless you are tested.

If a medication contributed to your case, please fill out an Adverse Event Report online at: http://www.fda.gov/Safety/MedWatch/default.htm. Under "Resources for You," in left-hand column, click on "Report a Serious Medical Product Problem Online." (Allison provided this information.)

The best protection for you and others is thorough hand washing and good hygiene. (See Dr. Borody’s articles and “CDI.”) For more information, see other support groups on Facebook, including http://www.peggyfoundation.org, the Mayo Clinic and Web MD web sites, and “The FMT Foundation” under “Links” on the homepage.

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Again, welcome. Remember, the odds are in your favor. (End of letter.)

Sorry that you have to go through this and to have surgery on top! Yes, a GI doctor is one who would treat this as well as an ID. Either one is fine. I think since the Flagyl did not work for you, and it has side effects, you should talk to your doctor about switching you over to vancomycin, especially if you have to take another antibiotic with the surgery. I hope it is not Clindamycin, which is one of the worst for giving c diff. There is a list on the CDI information section that has antibiotics that are less likely to cause c diff. I would print out the list and talk to whoever is prescribing the antibiotic with surgery and see if they can give you one of the antibiotics that is less likely to cause the c diff. I don't know how your insurance works to get a referral, but I would ask to be referred to a GI or ID if you can. If your insurance does not cover the vancomycin pill, there is a liquid that is much cheaper that a compounding pharmacy makes up. It only lasts for about 2 weeks though, so if you are prescribed it for longer, you would have to get another prescription.

[Dakzee]

Thank you. I did read the rules before posting.
Clindamycin is what gave me c diff.
Thanks for the information and well wishes Beth. I'll get that list.
Ever heard of a doctor prescribing Flagyl for 3 weeks?
Cris

[beth22]

The 3 weeks is not the problem - it is the fact that it is the second time because the first time did not work. That is a strong dose and if the first round did not work, I would ask for vanco.

[megan2]

He should not give you flagyl again he should have given you vancomycin. Plus flagyl has side effects not the greatest drug.. Don't think this doctor knows his stuff maybe find a new one

[Dakzee]

Thanks Beth and Megan.
My thoughts are that the side effects of Flagyl, especially if taken a lot makes you feel sick and can cause neuropathy. I also agree that Vancomycin should be the next prescribed medication.

I believe he's not giving much thought to my situation (especially since I already have a medical problem with needing surgery) or he's not well informed or both and that's not good.

I'll ask tomorrow about Vancomycin see what my insurance company says about coverage for it and getting a proper doctor and care, but I already know I can get care at Johns Hopkins. Just not sure about needing a referral.

Thanks for talking with me - it means a lot - I've felt pretty alone.

[roy]

Your Drs going by the guidelines (almost).
In a mild case they say a second course of flagyl is the correct treatment, nowhere does it say a 3 week course though.
Its all down to $$$ though, 20c a pill for flagyl, $17 a pill for vanco.

When you say mild symptoms what were they? and what symptoms do you have now?
Its very possible to test positive but not need treating and very likely to test positive after the active infection has been cleared
If your Drs treating only because the retest did not prove a cure then that's wrong

Roy

[Lisa33]

I believe taken Imodium with active c-diff is a big no-no as well! You want the toxins to come out of your system. I would definitely seek care from a Gastro dr or ID who is more versed in treating c-diff. I also agree with the others, that if you need to be treated, ask for Vanco. I took Flagyl for the first line treatment, and I relapsed. I had very harsh side effects to the point that I couldn't function or eat anything. Flagyl made me sicker than c diff! Vanco is what cured me, and I had zero side effects. Flagyl is much cheaper, which is probably why many doctors prescribe it for the first and even the second round of treatments. Based on everything I've read, it seems that Flagyl rarely works anymore. I wish you better health and hope you feel better soon!

Lisa

[Dakzee]

Lisa

I agree - everything I've read says taking something to relieve the D is bad - things need to move out, not hang around for the c diff to flourish.

Looking into a specialist now, along with trying to get Vanco or Dificid.

And I don't want to take an antibiotic after my surgery if I don't have to, so calling my ENT doctor again trying to get a response about that too.

I'd really just like to have the fecal pills and get this over with asap. Sigh and Argh!

It seems like no one knows what they're doing but me.

Cris

[Dakzee]

The ENT doctor says I have to take a cephalosporin after the surgery. Since my c diff treatment is subpar right now and not I'm not getting better, I really don't want to, but I'm postponing the surgery. Sad face.

Now I have to try to get the proper med and find a specialist who knows what they're doing.

Cris

[Dakzee]

Roy,

I didn't see your post until now. Sorry.

My symptoms have not changed since I was first diagnosed - which is why I was tested a second time. '

I say my symptoms are mild because I've read how bad it can get, and my symptoms are:
1. I am fairly fatigued.
3. I only have between 1-3 movements a day and the smell hasn't changed since I was diagnosed (I always have them in the morning or within 2-4 hours of waking up).
3. I haven't had any nausea but my appetite is reduced.
4. Maybe once a week I get a pain in my stomach that last for 1-3 minutes, and then it's gone.
5. My other main symptom is that my bowel just feels wrong - irritated and inflamed - it's not painful, it's just I never felt this feeling before and worry I might have colitis.

The COMPLICATION is that I'm taking hydrocodone 10/325 2x a day, and I'm fairly certain that it's masking my symptoms. Over the last 10 days or so, periodically, I've reduced what I take to a 1/2 or only 1 pill to see if I'll feel worse and check if it's masking my symptoms and it seems that it is. When I don't take it or reduce the amount, within 6-8 hours overall I feel worse (more overall unwell, more fatigued, more gurgling in my stomach, a little more bouts of short lasting stomach pain, and I have more movements). And I"m stuck between wanting relief and taking the hydrocodone which probably is stopping me up a bit (which I know is BAD because it's keeping the c diff spores in longer than they should be). I've been on hydrocodone for 2 years taking 1, or 1 1/2 up to 2 a day (because I don't want to become physically addicted and develop a resistance to it and then need more pills). Maybe coming off of the hydro will cause more D symptoms - I hope not, but I think I need to rein this in and stop taking it completely to know how bad by symptoms really are.

As of this afternoon:
I was prescribed Vanco in liquid 250 mg 4 times a day with enough for 30 days in the bottle to pulse off later as needed.
I have an appointment with a GI specialist's Nurse Practitioner on Tuesday the 7th.

What I've been doing the last 2 weeks:
I take 1 or 2 good probiotic caps (spaced out at least 2 hours from taking Flagyl I was prescribed) and the Probiotic requires refrigeration that contains: L. rhamnosus 8 billion, L. acidophilus 1 billion, and Bifidobacterium bifidum 1 billion.

Diet: I'm trying to make the majority of what I eat be whole grains (oatmeal), fruit (bananas, apples, applesauce, canned peaches and mandarin oranges not in syrup), chicken vegetable and noodle soup, beef barley soup, toast, rice, Kefir, yogurt with live cultures, PB&J, and occasionally I'll have some chocolate chip cookies, but I'm trying to stay away from sugary foods and meats and processed wheats. Before changing my diet while c diff positive, I was able to eat whatever I wanted including mildly spicy foods and it didn't bother my stomach, but the next day I paid for it so I'm staying away from spicy foods now. I'm also trying to stay away from meat in general except for the bit that's in the soups I'm eating.

Yesterday I ordered Florastor and VSL3. I'm not yet sure if what I bought yesterday is redundant with what I'm already doing.

My current goal is to get better enough to have my surgery so I can rule out that I have cancer in my salivary gland. I've rescheduled my appointment for May 4th, hoping the c diff will be under control so then I can go through all of this again when they prescribe a cephalexin to prevent skin infections post surgery.

I feel like a walking c diff spore and I'm becoming a germaphobe afraid to touch anything despite the hospital grade germicidal bleach I'm using and thoroughly washing my hand and trying not to contaminate anything (which is impossible). I have wall to wall carpeting in the house and I feel like it's in the carpet, and I'm getting it on my feet or socks when leaving the bathroom. Even taking a shower bothers me because I feel like I'm spreading the spores all over my legs and feet when washing you know where and I have the same concern after using the facilities - it's getting on my legs because it's on my underwear. Do I sound paranoid? I know I do.

Sometimes I'm giving myself stress induced hives (I don't think they're from the Flagyl or Vanco I just started - I had chronic hives every day, 24 hrs a day for 2 1/2 years because of a bad situation in my life. The hives topped in 2005, and now I only get them about 5 times a year and I'm not covered with 40-60 of them anymore, it's just a few here and there.... but the last few days, with all the bad advice from my doctor (besides the positive headway I made today) I'm getting a hive here and there more often.

Advice, thoughts, insights all welcome.
With gratitude to have somewhere to go where I know I'll be understood,
Cris

[Misscshell24]

Sounds like you're on the right track. Good to hear you got switched to vanco. It is much easier for most that take it. Sounds like you've been doing a lot of research. That's great! You're your own best advocate. Sounds good that you have an appt with a GI. Hopefully they are familiar with how to treat c diff. If you do feel you need another opinion, there are a list of docs in the Doctors forum that have a good rep for treating c diff. Also, in the CDI forum there is a post on antibiotics, some are 'safer' than others regarding risk to c diff. Might be worth a read to help ease your mind. Sounds like your vanco Rx will cover you with your upcoming surgery, if it is within the next 30 days. I believe most liquid vanco is good for 14 days, though, might want to double check with the pharmacy.

I also had severe pain due to multiple surgeries when I was diagnosed with c diff and needed pain medication that stops you up, so I understand your conundrum. Try not to worry too much. Be comfortable, but try not to stop yourself up too much. Also, many have mentioned that stools were loose when on vanco, mine were. So that may help counter act things a bit.

Hope all goes well with the GI and your upcoming surgery. Let us know how everything goes. Best wishes for you and hope you're feeling better very soon.

[Bobbie]

Pain meds do slow down the GI tract. Drinking lots of water will help. Fiber would also help but check with your doc first.
Glad you are going to see someone in the GI field.

Keep us posted.

[roy]

Is the 1-3 times a day watery D?
Has it ever been watery?

[megan2]

Going to the bathroom that many times a day is NOT c diff... watery diarea is c diff. I am not sure you have c diff maybe you just have colitis or irritable bowl. Drs don't treat for c diff unless you have many loose bowl movements. What you posted are your symptoms does not sound to me like you even have c diff. Also there is a part of the population that carries c diff in there bowels normally unless you are having loose movements you do not need to take any medicine. Your post totally confused me.. How many Loose movements have you had ????