Vaccine, VSL3 and Male vs. Female Enema Donors

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

Postby Guest » Tue Apr 23, 2002 8:56 pm

There has been some question about whether a male or female donor is best for the pooh enema. I finally got to talk to Sharyn this afternoon and she explained this way: A male is better. However, a female in good health who has not taken anttibiotics recently, poohs regularly and has regular periods is an o.k. donor. Sharyn says a male is preferrred because generally, it is the female who has IBS or other stomach upsets. <BR>If a female donor is used, it should not be done just before, during, or just after the period because of the fluctuation in the hormones. <BR> <BR> <BR>And now, about the vaccine study: I heard from Dr. Kelly today and he says only the HEALTHY subjects will receive a placebo. Any subject with active C. Diff will definitely receive the vaccine. Also, it does not matter how long it has been since you have had a positive stool test as long as it occurred within 30 days of stopping therapy on Vanco or Flagyl. He thoroughly understands about false-negatives. <BR> <BR>I also asked him his opinion about VSL. He said he had recently given it to a patient who thus far was responding well. He thinks it is "safe, easy and worth trying- certainly a lot easier and less expensive than a trip to Australia." <BR> <BR>As you can see, I spent most of the day contacting doctors. I also sent a fax to Dr. Allen. <BR> <BR>Sharyn is sending me all the info, etc. about the pooh enema. I also think I will sign up for the vaccine trials. I also think I will try the VSL3. <BR>Just have to make up my mind which I will do first. <BR><BR>[Guest Posted by: 'Jennie']

Guest

Postby Guest » Tue Apr 23, 2002 10:05 pm

Good for you, Jennie! It must feel good to be moving in an affirmative direction - whichever one you choose to take. I look forward to the day when you tell us you're well. I'm sure it will happen, one way or another. <BR> <BR>Good luck. <BR><BR>[Guest Posted by: 'Lauren']

Guest

Postby Guest » Wed Apr 24, 2002 1:36 am

Jennie, <BR>Good for you. I'd do the least invasive and least risky first. At least we now have some alternatives. For years, there were only two alternatives: Flagyl and Vancocin. Also Questran. <BR><BR>[Guest Posted by: 'Bobbie']

Guest

Postby Guest » Wed Jun 19, 2002 11:19 pm

Jennie, <BR> <BR>Got antibodies? <BR> <BR>Just wondering if you've mounted an immune response to toxins A and B yet. I finally booked my first flight to and from Boston yesterday and am cautiously optimistic about being in the study. Dr. Kelly told me I am among the last batch of volunteers who will be receiving the vaccine. Whew! <BR> <BR>Anyway, hope you're doing well. Please, keep me posted. <BR><BR>[Guest Posted by: 'Friday']

Guest

Postby Guest » Thu Jun 20, 2002 11:03 am

Friday: Do you think that Dr. Kelly would be interested in having an HIV+ person, that has active C. Diff., in his study? I do not have insurance or any means to pay for any part of the study including travel. I get all of my medical care and meds for free at Grady Memorial Hospital/Infectious Dieaese Clinic in Atlanta. <BR><BR>[Guest Posted by: 'Danny']

Guest

Postby Guest » Thu Jun 20, 2002 12:26 pm

Hi Friday, <BR> <BR>It is really good to hear from you!.. I have had two vaccine shots so far and am scheduled for the third one on June 27. I had a relapse last weekend but not as severe as usual. I emailed Dr. Kelly and advised him of the relapse and asked him if he thought it was caused by the vaccine and whether I should continue in the study. He called me right away and said the relapse was NOT caused by the vaccine and that I should continue in the study. He explained that the antibodies do not really begin to build up until the third and fourth shots. He tends to believe that in my case, the Vanco is now causing me to get C. Diff and said on my next visit he is going to try to lessen the dosage of Vanco and heavy-up the probiotics. <BR>As for being cautiously optimistic, I can fully understand that feeling. I think anytime you step into the realm of the unknown, it is a bit scary, and must admit that before each shot, I say a silent prayer. <BR> <BR>Also, the flight fright lessens with each trip. <BR>It is too bad we couldn't participate in the study at the same time. <BR><BR>[Guest Posted by: 'Jennie C']

Guest

Postby Guest » Thu Jun 20, 2002 10:34 pm

To Jennie C. and Danny <BR> <BR>Jennie: Glad to hear your injections are going well! I am going to go to the bookstore this weekend to treat myself to a Boston travel guide. One whole week to myself in the big city. . .oh, am I looking forward to this! That is, all except the flight, but I'll trust you that my fear will lessen with each successive takeoff and landing. Please give me updates on your trips! Take care! <BR> <BR>Danny: Unfortunately, people with "serology positive for HIV" are not able to participate in this phase of Dr. Kelly's vaccine trial (per his exclusion criteria). How are your probiotics working? Feeling better lately? Try not to get too discouraged. You have lots of support here and we will all help you however we can. <BR><BR>[Guest Posted by: 'Friday']

Guest

Postby Guest » Fri Jun 21, 2002 8:30 am

Friday: That's alright about the trial, I was just asking. YES, the probiotics seems to helping out immensely. Had a good night last night with only getting up three times and two of them was just to urinate. WOO HOO!!!! I did not have a movement till 5am this morning an another at around 7:30. I think the key to not going so much during the night last night as opposed to the night before is I did not eat anything after supper at 6:30pm last night. I had usually ate my yorgurt and some peanut butter at night. Not last night, so I will try it again tonight an see how it works out. Just have to eat more at supper tonight as not to be going to bed hungry. <BR> <BR>I am feeling tons better. Babysat my neices and nephew on Wed. and yesterday. But, only for a couple of hours. Do not have to babysit today. Not sore today at all and movements yesterday, and this morning were natural and involded no straining. I actually, this morning, could hold it till my mom got out of the bathroom. It is so nice to finally be able to do that. Hope I am not speaking to soon. Took my morning antibiotic at 7am, along with eating a banana and will take my probiotics at 10am. <BR> <BR>Here's hoping for another great day today. Am taking my car to the shop at 9am to get it fully serviced for my upcoming trip to Daytona. I am going to be fully well from this an make my trip. <BR><BR>[Guest Posted by: 'Danny']

Guest

Postby Guest » Fri Jun 21, 2002 10:09 am

Hi Friday, <BR> <BR>I don't want to clutter up this site with anecdotes about the trips to Boston. If you would like to meet me in the Chat Room one evening I can give you tips on where to eat, etc. <BR>Also, about the cab driver who became miffed at me and spit at me because I only gave him a 20% tip!. Boston is awesome with all of their beautiful but medieval-looking churches. I also got to meet Dr. Lynne Kyne, the famous doctor who works with Dr. Kelly on researching C. Diff. <BR><BR>[Guest Posted by: 'Jennie C.']

Guest

Postby Guest » Sun Jan 23, 2005 7:33 pm

Has anyone called Dr. Brandt at Montefiore Medical Center in Bronx, NY? He was the doctor in the article on the infusion via one-time colonoscopy. I'd be interested to know if anyone else has had this procedure or even thought about it. Quite obviously, the results posted in the article were excellent and the woman has been free of C-Diff for 5 years. I sure wish they'd just do this right off after two rounds of meds not working. It's so simple and one doesn't end up with the damage from C-Diff. <BR> <BR>Kelleigh

Guest

Postby Guest » Sun Jan 23, 2005 7:42 pm

What were the results with this vaccine? Is everyone that had C-Diff that participated now free of this vile disease? Please post results...or tell me where I may find them. Are they on the web? I'll do a search, but would love the feedback from someone who participated.

Guest

Postby Guest » Sun Jan 23, 2005 9:22 pm

k, <BR> <BR>I don't know the results from the vaccine or even if they're published. I'm under the impression that the prelim. results were not what they'd hoped. You could try a search on Pubmed. <BR> <BR>Jennie, (in the posts below) ended up with some very serious complications directly related to the vaccine and we haven't heard from her in a long time. She was critically ill and we fear the worst.

Guest

Postby Guest » Sun Jan 23, 2005 10:23 pm

Allison - you're right about Jennie, although I think Friday, who also tried the vaccine, got better almost immediately. Still, with Jenny's results I would certainly not be anxious to try it myself. <BR> <BR>Kelleigh - It took me two years of vanco to get over c-diff. In retrospect, I'd probably treat it the same way that I did at the time (I've been fine for four years now). Life on vanco isn't half bad. Managing the drug carefully allowed me to continue my life pretty much as normal. So far as I know, I've had no residual effects apart from never wanting to take an antibiotic again. It is good that there is research going on and we have experimental treatments. However, it is important to be mindful that they are experimental and there are risks, some of which may be unknown.

Guest

Postby Guest » Fri Jan 28, 2005 10:06 pm

Kelleigh, <BR> I called Dr. Brandt's office in 2003 and was told that since I'd had cdiff for "only" a few months that I wasn't sick enough for him to take me on as a patient. It seems that they have strict protocols for infusion. <BR> I personally had much better success with Dr. Borody in Australia. He was wonderful, and is willing to work with any American doctor who wants his help. My infusions worked right away, and I have been OK for over a year now (will be 2 years in June).

Guest

Postby Guest » Sun Jan 30, 2005 11:16 am

Dorothy- <BR> <BR>After your infusions, did you experience symtoms like excess gas? Also, did you get cured right away or it took you a few weeks to get the full benefit? <BR> <BR>Thanks.


Return to “Treatments”



Who is online

Users browsing this forum: No registered users and 14 guests