Vanco pulsing. I take vanco 2 times, 5am & 5pm. Then 2 days without for 2 wks. Repeat for 1 vanco. Get nasty symptoms?

[Machaon]

I decided to take double probiotics at 5pm instead of vanco. I only took one vanco today.

Has anyone pulsed down to one vanco every three days? Get nasty symptoms?

I don't feel good but I don't feel overly sick. I felt much worse this morning!

I am hoping that the probiotics do some good even if it is just a little, so I don't have to take a second vanco.

Has anyone, with C-diff really been helped by probiotics?

[NanciT]

You CAN over do the probiotics and they will ALSO give some symptoms. If you doubled the probiotic, it might be too much for you. Go back to what you were taking.

It is very scary for all when we are tapering down on these meds, the fear takes over. But it is a process we have to walk through. Continue with your taper and see how things go. Do remember it's possible to get Post IBS symptoms. Give yourself time to get through the taper.

I would change nothing at this time

Take Care

NanciT

[Machaon]

Thanks NanciT!

The fear IS taking over!

I feel that the probiotics are helping, but I just don't know!

I'm seriously contemplating trying one vanco per day at 5am, and my probiotics at 5pm. I am so glad that I didn't yield to FEAR and take a second vanco at 5pm.

So... here I sit, waiting for symptoms to get a lot worse, and hoping that they don't.

Thanks, Bob

[georgina]

Yeap , probiotics can give you symptoms. I cannot tolerate probiotics in any form :pills or fermented foods , I get bloating , gassy and more frequent trips to the bathroom.

[NanciT]

Hang I there.
The FEAR is a natural thing we go through and often lasts for awhile. Let me just say this, often MORE treatment can cause more issues. Deal with the Fear and Post IBS and don't consider it's a relapse unless you have at least 3 days of D. This can vary per person but you do remember when initially diagnosed so watch for those symptoms.

Wishing you the best, recovery takes time and things just do not go back to "normal" right away, it takes time

NanciT

[Machaon]

Thanks Georgina and NanciT for your comments!

Probiotics don't bother me. I just wonder how much they help.

My pulsing was down to one pill every three days. Yesterday I took my scheduled vanco at 5am. Felt pretty good. I then started feeling quite ill with urgent runny potties. The vanco must have kicked in because as the day progressed, my health improved. Took my probiotics at 5pm.

I thought that I had won the war against C-diff. Have felt very good for weeks! Woke up this morning feeling good. Shortly thereafter I started feeling very ill again! Took a vanco at 8:30am. At this time, 10:40am, I feel a little better with an appetite, although still a little sickly.

Here's what I think and why I am boring you with all of the details: (thanks for reading!)

Taking one vanco every three days leaves me unprotected against C-diff for about 60 hours. Too long! It allows C-diff to get too much of a foothold in my gut. So... what do I do?

Choice 1: One vanco per day at 5am with probiotics at 5pm?

Choice 2: Go back on two vanco, at 5am and 5pm, every three days?

I think that I will try choice 1. My body seems to be telling me that I need the vanco in the morning to kill the C-diff spores that hatch over night. I'm just hoping that I'm right and hoping that I don't continue to get sick every morning! This is so very frustrating, not knowing what is best to do and not wanting to have a nasty relapsing C-diff infection!

Choice 1 will hopefully allow me to avoid nasty symptoms until I can get to the doctor for a new rx, perhaps dificid?

[roy]

Most posters say mornings are rough during recovery.
Stop experimenting and get an experts advice.

[Machaon]

Thanks for the advice and good info, Roy.

I've been disappointed by the performance of medical professionals during my life. The way I figure, it's either them experimenting or me experimenting, and I have much more time to evaluate, analyze and solve my health problems. I was diagnosed with Heart Failure back in 1987 and was faced with non-caring, inept doctors, under whose care I worsened. My weak heart improved significantly after I took more control over my health.

The large number of C-diff patients relapsing, over and over again, shakes my faith in medical professionals even more.

Today I am not feeling so good. Runny potties. Feel "out of it".

Also I am also concerned about developing a resistant strain of C-diff by constantly starting and stopping Vancomycin. I took one vanco at 8:30am. I'm planning to take another one at 8:30pm. I'm hoping to, at least, get stabilized again.

[NanciT]

Its impossible to know how you will do off the Vanco taper until you are off it. If you get severe D and feel poorly as you end the Vanco, you really need to see a GI. There will need to be a next step and this is not something you can do on your own. I lost faith in my Gi's and changed several times which is something I have NEVER done. This is a very difficult illness to have and to treat.
You are going to have to consult a doctor if it comes back.

As you are coming off, you may not feel well and get IBS. Most of us can tell at some point if it's a relapse or IBS.

I know you want to treat yourself but honestly this is a terrible illness and if it returns you need a physician's help. Otherwise you really are risking your health.

Sorry you are going through this, I know the fear...all too well

[Machaon]

Thanks NanciT for the good info, feedback and understanding!

The potties kept getting worse and more urgent. I was feeling more sickly. I think my effort to use the Bakken protocol to rid my gut of C-diff spores has failed, and I was heading towards a full frontal attack of C-diff! Damn it!!

I do not want to wait until I suffer from three watery D's! I do not suffer from IBS unless caused by chemical exposure. I do not want to put my body and myself thru watery D's! Right now my appetite is good, I can eat salads and veggies and dairy, and I don't want to mess that up!

So... What are my options? I started 125 mg vancomycin every eight hours yesterday. At this time finally I am feeling better, constipated, but no more constantly feeling like I urgently have to visit the potty!

And... I reluctantly scheduled an appointment with a infectious disease specialist for next week. I have enough vancos until then. In the meantime I want to figure out what went wrong with my attempt at Bakken's pulsing and MAYBE try again!?

Thanks again NanciT! For all you have endured you are remarkably patient and understanding!

[NanciT]

First you want to make sure this IS a relapse and discuss this with the ID.If it is, at this point talk with the ID about a Dficid Taper or FMT. Follow his plan, you need to have the medical advice and support of a physician. I know how difficult that is when many have failed you but you need to get rid of this once and for all.

Keep us updated!

NanciT

[shooten]

Sorry to hear the pulse isn't working well for you. I hadn't had time to post the past couples day. We are pulsing at the same time. I took my one pill on Wed. And was having some symptoms, mainly urgency and poorly firmed BM. I got better throughout the day and have been good these past two days. Appetite is the best it has ever been, I can't stop eating. Tomorrow morning is a pill day so we will see if the symptoms return like they did Wed. I space my probiotic throughout the day. I take my antibiotic around 8am and then take a florastor around 9am, one bluebiotic with lunch, then 2 florastor and 1 bluebiotic with dinner. Seems to be working. I highly recommend florastor, it is yeast based so the antibiotic won't kill it. About a half hour after the florastor I start to feel pretty good. There was a clinical trial done with vancomycin and florastor and they found people taking florastor we a little less likely to relapse.

[Machaon]

NanciT, I am sure that it is not a complete relapse but I am wondering what is happening. Obviously something caused runny potties and made me feel quite ill, mentally confused and weaker. I just felt that the increasingly bad symptoms were not normal for a pulsing. I am guessing that the germinating spores won this round.

So, yesterday and today I am on 125mg Vanco three times a day. I am feeling better, but still with runny potties. I haven't figured out tomorrow yet.

Yes... I will discuss Dificid with the ID.

Buts... I am not done yet! It's going to be round two starting tomorrow, me thinks!

Thanks NanciT!

Bob

[Machaon]

shooten, It's remarkable that you suffered some unpleasant symptoms from the pulsing, but rebounded! Way to go! Keep up the good fight!

I'm trying a couple of different brands of Saccharomyces Boulardii. I had a good response to the SB two days ago, but not since. Just got worse until I started back on Vanco 3x.

Seems like you are on the road to recovery and have completely planned out your pulsing. I think I will also try Saccharomyces Boulardii twice a day.

I have to figure out what to do. I would love to get back on a pulsing prior to going to the infectious disease specialist next week. Perhaps I can learn something from your encouraging results!

Currently I am thinking of trying vanco twice tomorrow, instead of 3x, followed by skipping a day to see if I can get back on the pulsing wagon. I just have a feeling that I'm heading for a full relapse.

[NanciT]

Once again I would recommend following the plan because you really cannot know you will relapse until you have completed the taper. I did not relapse until around day 16 post a 3 month Vanco taper. Everyone is different.

Seeing the ID is your BEST bet. Follow through with that and try not to change your dose. Hopefully this taper will work, but still see the ID

NanciT