Infusion

Treatments, possible treatments, unsubstantiated/unproven treatments. Consult your doctor first.
Guest

Postby Guest » Thu Sep 09, 2004 10:35 am

Hi there, <BR>I have had c-diff since the birth of my child 9 months ago. <BR>I have been on vanco and tried to stop 6 times but it always comes back. I decided to contact Dr. Borody's office and spoke with Sharyn. <BR>I started the infusions last Friday. And it seemed to help. I did 4 then took a break. On day 5 I started with cramps and loose stools. Then I did another infusion yesterday and it doesnt seem to help. I was going to do the last 4 but I dont feel very good. I passed mucous and lots of cramps. Doesnt anyone have any advice? Should I continue to do the infusions of start my Vanco again. <BR> <BR>I am wondering how much stress can be a trigger. While doing the infusions, my son started with an ear infection and I wasnt sleeping at all. <BR> <BR>I just want this to go away. I am so tired!!!! <BR>MJ

Guest

Postby Guest » Thu Sep 09, 2004 12:16 pm

Hi, MJ- oh my GOSH..poor thing!! What a way to start your time with your child! :( Im so sorry. <BR> <BR>Well, I'm here with ya, waiting to hear what the replies will be on this too-because I am ABOUT TO start my infusions too, at home with my doctor, THIS WEEKEND!! When I spoke with Sharyn, I remember her saying "I always WARN the patients; during the infusions, you may feel great right away , and then "feel like hell" after that. There is a Gigantic battle of the bacterias, going on in your gut." Hopefully the good is winning even though it feels awful?!! OF COURSE I cant say for sure--check w/ your doc- but i just remembered that helpful point made by Sharyn. I'm SO afraid of the SAME THING happening..then not being able to tell WHICH is worse. But I think this same thing happens to us all on pro-biotics...worse OR better on culterelle for the same unsolveable reasons. Grrr! <BR> <BR>Was your donor screened thoroughly? <BR> <BR>I would check in with your doc & weigh the risks. <BR>Did you do the 5 days of vanco before starting on the 6th day? Im just curious cause I'm about to start too...Ive battled with this disease over and over, after antibiotics..but have had it so life-threatening until now. Let us all know what you decide to do and how it works!!...I hope your son's ear feels better too! <BR> <BR>Love & healing prayers <BR>Megan

Guest

Postby Guest » Thu Sep 09, 2004 12:58 pm

Megan, <BR>Thanks for the encouragement. I know that my donor was tested for everything and he is fine. <BR>I didnt know that you feel great for a few days then not too great after that. Well maybe it is working. <BR>I think that where I went wrong was stopping after 4 days for a day. I think that you should do 10 days straight. <BR>I did take Vanco 125mg 4 times a day for a month before starting the infusions. I stopped on Wednesday. I did the bowel cleansing Thursday and then started the infusions on Friday. I felt great, until Tuesday. NOw we are Thursday and I feel pretty bad. I passed mucous and always have this urge to go. I was only able to keep the infusion for 30 min today then had to go to the bathroom, so I doubt it even worked. <BR> <BR>Good luck with the infusions. Hopefully they will work for both of us! <BR> <BR>MJ

Guest

Postby Guest » Thu Sep 09, 2004 1:19 pm

MJ - I was coached this way : 5 days of infusions (week days) , then a weekend break, (2 days off) then 5 week days on again. =10 days total. Of course your case could be different so I don't know, but thats how im gonna do it. <BR> <BR>Hope that helps...& I mostly hope that your oogie-boogie "mucus"-monster is simply the bad guys, fleeing for it!! Back to Heck, where they came from!! ;) ...."and stay out!!! hmph!!" hehee. <BR> <BR>Luck & love, & please keep me (us) good-n-posted, if you can. I have to go to my doc's now and get an IV of fluids today...I keep fainting from good ole c-diff dehydration. wee. <BR> <BR>Love <BR>Meg

Guest

Postby Guest » Fri Sep 10, 2004 8:29 pm

MJ, <BR> <BR>Don't get discouraged. I was sick, in and out of the hospital for 6 months before I did the infusions. I started them in February. I did 5 then skipped two days and did 5 more. Well I was ok for a couple days then started feeling yucky again. I called Sharyn and she said I may have to do some "pop up" infusions to rebuild my good bacteria. I did 1 every 3 days for a while, then 1 a week, then about 1 every month. It has now been over two months since my last infusion and I feel pretty much back to normal. I have gained back all my weight and have my energy back. I think it just takes longer with some people. Don't give up!!!! We will all beat this thing. If you need any more info my e-mail is <!-- BBcode auto-mailto start --><a href="mailto:rwear@socal.rr.com">rwear@socal.rr.com</a><!-- BBCode auto-mailto end --> . Good health to you!!! <BR>Valerie

Guest

Postby Guest » Sat Sep 11, 2004 4:15 pm

Thanks for the info Valerie! <BR>I have done 8 infusions and will do 2 more! I am starting to feel OK! If I see that I start to feel yucky I will probably do the pop-ups! <BR>HOw long was it after the infusions that you started to feel sick again? <BR>I felt bad on day 5 and 6 but since then I feel OK. <BR>I hope it is working!! <BR>MJ

Guest

Postby Guest » Sun Sep 12, 2004 3:15 pm

HI MJ and Megan, <BR>I am on day 6 of the infusions. And I also feel like crap. I actually logged on today to search for info and messages sent by Vicki since I know she did the one infusion by nasal tube and it worked for her. I know the statistics and have been preparing for this literaly since March when I made my first apt with Dr. Borody. But some how I just thought I would be doing better than this by now. I have faith in the power of the human flora but I just did not expect to get worse. <BR> <BR>I have been able to hold them, never losing them exept the second one. I put way too much saline in and could only hold it an hour. And MJ,I know how you felt after losing it in 30 minutes. I was so upset that I could not hold it longer, was worried the entire day that I had not kept any of the good bugs in. <BR> <BR>But I have a method down now so to speak. I have been having that horrible odor and that gold colored d in the mornings. Plus my joints ache, fatigue etc. All slowly coming back since day 2. And my thirst, plus a very minor headache. Ugh. Plus I have tons of inflammation. Has any one else had the inflammation? <BR> <BR>This has me really afraid that the infection is also in my small intestine. But I am not stopping. I have all ten planned out with my donor. And then I am not sure what I am going to do. We discussed the possibility of slowly tapering them off. <BR> <BR>MJ what where your symptoms on day 5 and 6? Did it feel like the infection was coming back? Please let us know how the next few days go. Since I am a few days behind you I am more than curious to hear how you are progressing. <BR> <BR>I wonder if the lenght of time you have the infection has anything to do with it. Our best guess is over 3 years for me with a treatment routine of flagyl and then vanco for over a year now. I bounced off and on vanco the last 2 months just trying to control it. Then I did the pretreatment for 13 days. <BR> <BR>Megan my protocol also said pretreatment for 5 days but I ended up asking my dr for more drugs first because I was not reducing my sympoms at all and was scared to start the infusions without having had some relief, and second to work around labor day weekend for my donor and school starting for my son. I talked with Sharyn about this before I asked my dr so he had no problem writing me another rx. <BR> <BR>I hope today is going well for both of you and let me know how you are doing. <BR>karenb

Guest

Postby Guest » Sun Sep 12, 2004 3:21 pm

MJ, <BR>I forgot to ask you what you are eating? I have lived on nothing but basically chicken for 3 years now (I have many gi problems) so the idea of adding in new foods scares me. How much food with fiber have you been eating? I have been eating in addition to chicken, beef, tomotoes, zuchini and for fiber tons of pumpkin and lentils. Since I have never eaten lentils before 5 days ago I wonder if they could be the reason for some of the symptoms.

Guest

Postby Guest » Tue Sep 14, 2004 10:56 am

Well Karen, <BR> <BR>I finished my 10 days of infusions! And I feel OK. <BR>On day 5 and 6 I felt tired, had mucous loose bowels movements. <BR> <BR>I am able to eat anything. Food has never bothered me too much. I eat an omelette with spinach, onions, cheese, red and green peppers for breakfast.Then for lunch a salad and a sandwich and for supper whatever. I make sure I eat lots of fiber and I take acidophilus 3 times a day and drink juice and water.My weakness is sugar. I am trying to cut back. <BR> <BR>I was able to keep in the rest of the infusions except for 1 day. I spoke with Sharyn the other day and she said that if I can try to keep it for 2 hours that it is good. <BR> <BR>She also said that it was normal to have a few rocky days. And yes my stomach is often bloated. <BR>I am waiting a few days and crossing my fingers that it will work. But if I start to feel icky, I will do pop-up infusions. <BR> <BR>Hang in there, if you are like me, you should start to feel better by day 8. I am still very tired though. <BR> <BR>Let me know how you are feeling? If you have any questions you can e-mail me at : <!-- BBcode auto-mailto start --><a href="mailto:lmaria@scolaire.ednet.ns.ca">lmaria@scolaire.ednet.ns.ca</a><!-- BBCode auto-mailto end --> <BR> <BR>MJ

Guest

Postby Guest » Sat Sep 18, 2004 8:44 pm

Hi MJ, <BR>I have done 9 days and plan on actually doing two more at the begining of the week. I have only taken one day off so far so I am hoping a 2 day rest goes well. <BR> <BR>I did start to feel better around day 7. I still have fatigue but it is not like before. I can not eat much still but I was actually expecting that. My joints still ache. <BR> <BR>Hope you are still feeling good. Maybe being a new mom and all that goes with that is contributing to your fatigue as well. Let us know if you end up doing a few "pop-ins".

Guest

Postby Guest » Thu Sep 23, 2004 10:11 am

Karen, <BR>I am glad that you are feeling better. I finished my infusions 8 days ago and I still feel great. I still have a bit of stomach discomfort every now and then but I still think that I am on the road to recovery. 22 days without antibiotics! YAHOO!! <BR>I am still nervous to death that it will creep back. <BR>I cant wait for Day 90! <BR> How are you feeling these days? <BR>Pattik, how are you feeling? <BR>Take care, <BR>MJ

Guest

Postby Guest » Sat Sep 25, 2004 2:23 pm

Hi MJ, <BR> <BR>Today is not too bad. I think I might have Toxin A again as my symptoms are the same as they were last May when it came back again. I do have some great news though - my husband finally had his donor testing! So, if this is coming back, I'll be joining you in the infusion club. I have to wait for the results of my last culture - should know by Monday or Tuesday. So, please tell me everything about your infusions. Where did you get your enema kits? What foods did you eat to prepare (I know Sharyn says to go on a low fiber diet and the donor has to be on a high fiber diet). Any "secrets to success" you can pass on? Feel free to e-mail at <!-- BBcode auto-mailto start --><a href="mailto:pkopach51@aol.com">pkopach51@aol.com</a><!-- BBCode auto-mailto end --> , with any advice. By the way, who helped you? Were you able to give the enemas to yourself? I'm a little nervous about doing them but I just have a feeling that without them, I'll be forever battling Toxin A. It would be so nice to know that simply by tranfusing someone else's good bacteria into my gut, I'd be at the same risk as the average "never had c.diff" person again. You can be sure I won't be taking antibiotics though. I'm going totally natural from now on! Thanks for asking about me - I hope you are continuing to do well. How many days left to 90? Just think, by Thanksgiving you'll be breathing a huge sigh of relief and you can even eat a piece of pie! LOL!!

Guest

Postby Guest » Fri Oct 01, 2004 9:57 pm

Hi MJ <BR>How are you feeling now and what marker are you at? I lost track of how far apart we were since I ended up doing 12 infusions in all. I was just beyond scared to stop them. Once I turned the corner, around day 7, I could not believe how much better I felt. <BR> <BR>I am curious why you are calling 90 days the marker? I am hoping to make it past the 3 week mark. I just passed one week but I have other gi problems so it is hard for me to tell. I am so tired of trying to heal. <BR> <BR>Anyway I hope your energy level is coming back especially with such a little one in your house. I do not think I ever gained that sleep back from the first year we had our son I just can not imagine what c.diff was like with a newborn.

Guest

Postby Guest » Fri Oct 01, 2004 10:17 pm

Hi Pattik, <BR>Sorry to hear you are having some symptons again. So so glad to hear you finally got your husband tested. I ended up testing 3 people before I found one that worked. <BR> <BR>I ended up using the bags from optimal. I searched for others but could not find any and you really need the clear bag. I did 12 in all and I did them by myself. It was managable, although my husband helped me with the first one and I did need an extra set of hands just because it was a new experience. <BR> <BR>I am better although not totally cured for many other reasons. My bladder and kidneys are already benefitting as my dehydration blood work levels are down. <BR> <BR>I eat only chicken for the most part anyway so the low fiber diet before was not an issue. I ate tons of pumpkin and lentils during the infusions for the fiber. I actually made this ground beef, stewed tomatoes and lentils kinda hamburger mix that I ate almost everyday for lunch. <BR> <BR>Glad to hear your home computer is up and running. I will send you a note there and if you are on the road to the infusions I will be more than happy to share all the details of my experience. What an adventure. And I just have so much faith in the infusions I know they will work for you.


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