Pulse Dosing

Guest · Postby **Guest** » Tue Aug 14, 2001 10:31 pm

My GI doctor just told me to pulse dose on one day, off the next till I finish the Vanco. This doesn't sound right to me. I have a pulse dosing method somebody (Lauren?) posted here. I am going to bring it to him and review it. I think I need to be tapering longer than this... anyone have opinions on this? [Guest Posted by: 'Dave']

Guest · Postby **Guest** » Wed Aug 15, 2001 1:54 am

Well, it all depends on what gives you results. If you can stay symptom free on just one pill a day - then why not do it. Less drugs is better on the body. This is why pulse dosing works: When you are being treated with antibiotics (normally) - c diff bacteria hides out - in the form of a spore. The spores can live just about anywhere for years. If they are camping out in your gut somewhere as a spore - they can avoid getting killed by antibiotics. So, when you stop taking an antibiotic - the bacteria comes out to play and the spores move - exposing them. The idea is to kill them while they are active. I believe that is why pulse dosing works. Lori's N.D. had her pulse dosing with vanco AND tapering over a 4 month period. It was hard for her to not stop taking the vanco because she felt better and sometimes forgot she had c. diff - but if you don't follow the program and be consistent - it will come back if you haven't nailed it enough times. It's kind of like a moving target shoot. You fool it - it comes out of hibernation - then you zap it! The bad thing is that one person may taper for a 3 week period and it will work. Then another may taper for 4 months and it may not work. You may go through several cycles like this to see what your magic number is.... Good luck Dave, Sam [Guest Posted by: 'Sam']

Guest · Postby **Guest** » Thu Aug 16, 2001 12:32 pm

After talking with my GI doc, we agreed I should try Lauren's pulse dosing (off for 2 days, on 4 for 3 cycles, etc). I thought 1 day off 1 day on, was not long enough. I think tapering gradually, each couple weeks with more days off makes sense in my case. I was treated 3 times, each time it reactivated after about 3-4 days, very clearly each time. So... I am hopeful gradually increasing spacing will be most beneficial. My GI is pretty confident about the effectiveness of the Vanco, and thinks it will work... but he wants me off the meds entirely in the next 4 weeks or so. Thanks Sam. [Guest Posted by: 'Dave']

Guest · Postby **Guest** » Thu Aug 16, 2001 5:15 pm

Dave - if this doesn't work, remember one other thing. I took vanco for a month straight before beginning to pulse. Save that thought for the next time around if you need it. Good luck! [Guest Posted by: 'Lauren']

Guest · Postby **Guest** » Fri Aug 17, 2001 8:53 pm

I was on 125 x 4 for 1 week, then 250 x 4 for 3 more weeks... this Monday would be week 5, starting the pulse dosing. My GI doctor is having me do 250 x 4 for the "on pulse" days. I still have a little burning from the colitis, but it seems to get better week to week. The Vanco definitely was responsible for the cold/tingling hands, as this vanished on the "off pulse" days, and got worse the day I restarted. Gosh, I hope this works. If not, my GI doctor seems pretty aggressive with this stuff. I just hope it works, I've had enough! Thanks Lauren and Sam. [Guest Posted by: 'Dave']

Guest · Postby **Guest** » Sat Aug 18, 2001 12:02 am

I just got home from the hospital,the doctors toke me off ALL my medcine.Still all the pain and the sever burning on my side low grade fevers feet hurt body is puffe,I dont think the doctors known what they are doing.after 3postive stool test,I receive a negtive test at the hospital,but still have the same complaints. I now found a doctor that spectilize in cd in my area and going to see him in Sept. I'm so glad I have this web site to read the infromation each day is really support!! Wilma [Guest Posted by: 'Wilma']

davef · Postby **davef** » Thu Sep 06, 2001 9:48 pm

My colonscopy they took 6 biopsies and samples... all negative for anything serious. They did 3 different c-diff tests, all negative. I am using Lauren's pulse dosing recipe. My GI doctor made a copy of my calendar of dosing. My doctor and I think it's working. A big thank you to Lauren for posting this... it affected my life in a very positive way. <IMG SRC="http://www.cdiffsupport.com/discus/clipart/happy.gif" ALT=":)" width="15" height="15">

Guest · Postby **Guest** » Sun Sep 23, 2001 7:41 pm

I have a 13yr old son who just went through a bone marrow transplant on April 13th for cml leukemia.Things were going great until c-diff. started on Aug.2nd!We are now in the hospitol on IVs.He was on flagyl and it came back.They said the test came back negative but the pain returned and constant diareha.Now he has been on vancocin since Aug.20th.He has been off the vancocin for two days since we have been in the hospital.I think we are going to try the pulse dosing. I just read about it.We will see GI doctors tomorrow.This poor child has been through hell and now this any tips please email !!!! <a href="mailto:candled24@aol.com">candled24@aol.com</a> Thanks Michele [Guest Posted by: 'Michele']

Guest · Postby **Guest** » Sun Sep 23, 2001 10:40 pm

My vote (so far) is that pulse dosing makes sense, and seems to have worked for me. One point, I was on Flagyl THREE times and tested positive immediately after each course 2 out of 3 times. Flagyl did not work for me. Vanco seems to have worked, but I was on it for almost 3 months, the 2nd and 3rd month pulse dosing. [Guest Posted by: 'DaveF']

Guest · Postby **Guest** » Tue Sep 25, 2001 8:26 pm

what is pulse dosing??? [Guest Posted by: 'bob']

Guest · Postby **Guest** » Wed Sep 26, 2001 11:37 pm

It's when you go on and off the medication. The theory is (and my GI doc said this is theory--not me)... CDiff is a spore forming organism. It creates spores in the large intestine along with active versions of itself. The spores settle in and are immune to any known antibiotic. Therefore, it may be that RECURRENT sufferers may treat the live cdiff and kill it all off, only to have the spores hatch when the antibiotic is stopped. So here's the theory part... you allow different intervals of starting and stopping dosing, to let spores hatch, then kill the live versions before they can reproduce. My opinion is that all you can do is kill off the active versions enough, that your own positive flora overtakes what's left, permanently. Pulsing or tapering on/off the medication for a period of time, is thought to help reduce the cdiff in recurrent sufferers. The key is to help that by taking probiotics like Culturelle and avoiding any other antibiotics if possible, your system will return to a normal balance (since cdiff organism is a naturally occurring thing, it's the antibiotics we humans take that is unnatural and causes cdiff to get out of control). Of course, you need a good GI doctor to help you with this. And some people have cdiff once and never, ever get it again even taking antibiotics. We on this site, are the recurrent sufferers. Look for Lauren's pulse dosing recipe on this site. Find a good GI doctor who has heard of this and will work with you. My vote is that it works, or has so far for me (8 weeks free of symptoms now)... ending the vanco pulsing soon. Dave [Guest Posted by: 'DaveF']

Guest · Postby **Guest** » Fri Sep 28, 2001 9:28 am

Dave - you're scaring me. One of the things that always ultimately caused me a problem was going below a regular dose, even when pulsing. My suspicion is that less than 500mg per day, even when you're only taking the full dose on a periodic basis, is not enough to wipe out the new guys that have hatched. If you start to have a problem and need to begin again, take vanco full time for another month and then try plusing WITHOUT tapering the dose - ever. I do hope you're right, and this is the end of it for you however. Good luck! [Guest Posted by: 'Lauren']

Guest · Postby **Guest** » Fri Sep 28, 2001 6:11 pm

okay-- I am stupid-- what exactly is pulse dosing?And does it work with flagyl--as this is the only drug the Dr. will give me--he will not Rx vanco. thanks so much!!!! [Guest Posted by: 'bob']

Guest · Postby **Guest** » Fri Sep 28, 2001 8:57 pm

Look under "Pulsing Regimen" - this section. [Guest Posted by: 'Lauren']

Guest · Postby **Guest** » Sat Sep 29, 2001 11:43 pm

Lauren, you're message below is very confusing. Your pulse dosing regimine clearly talks about going on and off the Vanco to allow the spores to come out. [Guest Posted by: 'DaveF']

Pulse Dosing

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