Doc Won't Do Pulsing

[DaniDahlia]

So I contacted my GI to ask her about trying the pulse/tapering with the Vanco I'm on right now. Here is her response:

"Yes, I am familiar with pulse dosing. That is usually something done after a 2nd recurrence of the infection. Let's plan for the 2 week course treatment right now."

I am pretty frustrated. This may be my second round of Vanco, BUT, they initially had me on Cipro/Flagyl for a week before the 1st Vanco treatment. So, I tend to count this round as my 3rd round.

This is my life and I have 2 small children and I am still nursing. I had to cancel a surgery to remove a 4 inch ovarian cyst that was scheduled for next week because of this C. Diff. I feel like these doctors are playing around with my health and it's very upsetting.

Any advice on how to respond?

[roy]

You should be fine.
Don't test to try and prove your cured though, if the D stays away that's the only proof that's reliable.
The least amount of meds that do the job is always the best route to take.

[seekingcure]

I understand your frustration. From reading your posts, you sound a lot like me: a woman who likes to take control of a situation and really doesn't like it much when she can't. But sometimes we can't be in control, even though we are convinced that what we are asking for is the best option. I understand you feel like a pulse would be better as a sort of "insurance" that all the spores are gone. For now, it seems that you are going to have to work within the constraints of what the doctor has prescribed for you and hope for the best. Chances are good this course will be all that is needed to clear up your c-diff. Seventy percent of people recover from c-diff with one or two standard courses of medication, without any pulsing or anything else. You also have the benefit of youth on your side. Those of us who are older are often the ones who have more trouble fighting off c-diff. I wouldn't consider the Cipro and Flagyl your first treatment because Cipro can be a culprit in causing c-diff and is not used to treat it, so it may have actually been working against the Flagyl. Roy is right about the least amount of medication you can take being best, as the Vanco is also killing off the good bacteria as well as the bad. It sounds like your doctor is open to other options if this round of Vanco does fail.

If I were you, I would try to quit worrying about something that hasn't happened yet (I know it's hard) and concentrate on other things that you can do to prevent relapse. You might want to add probiotics, if you're not taking them already. You can ask your doctor for her opinion on this. My GI did recommend VSL-3 and s. boulardii during my treatment with Vanco. I also drank about three fourths of a cup of kefir two to three times a day. If you haven't already read it, there is a good article under "media reports" about the benefits of kefir in preventing relapse. Start slowly with the probiotics and the kefir, though, as both of these can sometimes cause GI issues.

Since you are close to Dr. Stollman, it would probably make you feel more secure to go ahead and have an appointment scheduled with him "just in case," especially since it's going to take awhile to get one scheduled. You can always cancel if you don't need it. Hopefully, you won't.

Hang in there. Things will get better.

[DaniDahlia]

Thank you for the reply. Is there a reason that Pulsing wouldn't be a better route than just a 2 week course? Seems to be so effective.

Honestly, I'm just plain sick this time from the Vanco and don't ever want to do this again. I'm having a hard time staying awake and it makes my stomach HURT (fancy that, side effects that mimic the disease you're trying to get away from). The nausea is awful. I seem to do best at night which is when I am doing all of my eating. Mornings I can try and get something in before my belly "wakes up." Hell, I feel pregnant again. :)

[DaniDahlia]

Oh, and I started the kefir last night and it was great. Had some this afternoon and my stomach gurgled very loudly for over an hour afterward. I think I'll just stick to nights. It really does help the stomachache over all though.

I have both the probiotics you mentioned but wasn't sure if they interacted with the Vanco or not? I know the yeast does not, but the probiotic??

[roy]

Hmmmmm have you had a pregnancy test!
Those side effects are NOT typical of vanco, but a typical symptom of antibiotics and c.diff is that oral contraception often fails!

[DaniDahlia]

I'm definitely not pregnant. Also, these symptoms only started when I began the antibiotic. I see them listed as side effects. Hmmmm

[roy]

Glad about that!
Call the next one Roy:-)


Sorry your getting side effects on vanco, most don't get anything like that.
PS
I had more mmmmmmmmmmmmm's than you

[seekingcure]

The s. boulardii can be taken anytime without regard for antibiotic dosage because it is a yeast and the antibiotics don't affect it. Vanco will kill the VSL-3, so space it halfway between doses of Vanco in hopes that part of it will survive.

As far as pulsing vs. standard two-week treatment, I think the doctor is just following whatever his/her protocol happens to be. I suppose they base this upon their experience with prior patients and how they responded. Don't know that either approach is definitely better as every patient is different and responds differently. Each doctor just has their own way of doing things and few of them ever agree on much of anything.

If I were you I think I would take the medication the way the doctor prescribed and see how you're doing closer to the end of the medication. If you don't feel like you are significantly improved, you can call back and ask for further guidance at that time.

It's unusual to have side effects from oral Vancomycin but, again, everyone is different. Hope you start to feel better in the next few days.

[Misscshell24]

I am on a vanco taper/pulse, but it's my fourth treatment for c diff. I was told there's a 50/50 chance it works, so agree it's best to no over treat. Hopefully the 14 days will be enough for you. Vanco makes me very tired and nauseous. A lot of things cause me pain, including s. Boulardii, foods, some supplements, etc. I see you're doing some things, it may be that they are contributing to your pain or it could be from the vanco. Wen you're doing several things it's hard to know if what it's from or if it's the irritation from the c diff. Dr. stollman is the best in the area, that I've found, if you're looking for a second opinion or peace of mind in going to someone that is very knowledgeable and has a good rep for treating c diff.

[Bobbie]

Dani,

Glad you are on Vanco. Flagyl not recommended for nursing mothers.

Make a deal with your doctor. If this treatment does not work he will agree to pulsing.

[DaniDahlia]

I'm so thankful I found this group! Thank you all for your advice. I will relax for now and cross the Pulsing/FMT bridge IF it comes. Fingers INFINITY crossed that it never has to come, Ha, ha.

I'm up tonight driving myself crazy with my symptoms. Maybe the C. Diff is getting worse, maybe I am just reacting to A, B or C supplement. I don't know. I hate stomach discomfort.

Drank more Kefir tonight and it was soothing.

I have one more question before bedtime:
I no longer have D. It's not happy big poop, but it's definitely not D. Does that mean that Vanco just bulks the stool, or does it mean that I may have had an actual recurrence from the first round afterall (I had been debating whether or not I had to be treated since my only symptom was sudden onset of D and no pain, fever, etc.).

So...does Vanco bulk you up, or is it something that is working to actually kill active infection and that's why I don't have D? OR...maybe I was just having a post-treatment flare up that was going to get a bit better anyway?

See, the disease drives ya nuts.
If anyone can decipher my babbling and answer, I'd appreciate it immensely.

Danielle

[seekingcure]

Vanco is an antibiotic that kills c-diff bacteria during its active stage. The fact that your diarrhea has gone away since you restarted the Vanco leads me to believe you did have an actual recurrence, but there's really no way to know for sure. I actually had small, frequent soft stools while I was on Vanco and didn't have anything that looked like a normal poop until I was close to being finished with my taper/pulse. For some people, though, BM's are perfect once they have been on it a few days. I've got longstanding IBS, so I am definitely not your typical case.

Hope tomorrow is a better day.

[DaniDahlia]

I would describe mine as small, frequent, soft as well (like thin tiny pencils). Just a step up from what I was having before the Vanco. It feels like D though with the cramping and all...only it's not. But in terms of a nice normal stool, I can't imagine ever having a regular one ever again. Never thought that would be a goal in my 30's! Hahaha.

[beth22]

Vanco gave me nausea too and made my colon very sore. It also gave me a ton of gas. My stools got looser on it. I think it affects everyone different. When I added probiotics, then things improved some. The vanco does kill a lot of good bacteria as well. In fact, my bms did not have any smell to them after just a few doses of vanco - kind of like a medicinal smell if any at all. I agree with Bea - see how you feel towards the end of this course of vanco and if you still think you are having problems, call the doctor and discuss the pulsing with her. But, what Roy said is correct - the less the better. I think if I had not taken so much vanco, it would have been a better result for me.