Relapsing and back on vanco.

[dawnie31]

Hello, I am just back from hospital with a confirmed relapse of cdiff, toxine positive plus inflammation of the bowel seen through a sigmoidoscopy, I have another treatment of vanco tapper for 2 months, and my doc is considering IV immunoglobulin or stool tranfer if this tapper does not work. I finallly found a specialist in paris who knows well cdiff as my GI was not aware of the stool transfer but he said that he will do it foe me if the vanco does not work this time. I have not awful symptoms just a bit more mucus in stools than usual and loose stools, as I have been undergoing these symptoms for ow year with Cdiff negative tests untill they found cdiff again!! I don't understand why they found it now, and why they did not find it earlier as I always had the same symptoms!!
I Now feel considered by my GI and he is even interested in my "so far unseen case" for him, and said that he learn something more everyday! Before testing positive he considered me as a crazy IBSer always complaining!
I am so relieved to know what is going on with me even if I knew it was still here inside me.
hope this is the beginning of the end for me!

[Mommy23]

I'm sorry to read your post, but glad that you have found someone who has finally listened to you. Hopefully this will be enough to beat it or at the very least help you feel better.
Sounds like the new guy is a gem, willing to learn & listen.

[dawnie31]

I was wondering what is the best tecnhique for stool transfers? Ng tubes? enemas via a colonoscopy? do we have to repeat the preocess during one week or one enema or ng tube transfer is sufficient? I am teaching my gastro in toulouse about these techniques as he is willing to do it for me if the vanco does not work, I am taking vanco for 2 days now and nothing happens. For those who have stool transfer with sucess can you tell me your experiences about it?
thank you for answering.

[Mommy23]

In regards to stool transfers, as you mentioned there are several ways it can be done, colonoscopy seems to be one of the best methods of administration. Since you have a doc willing to help he would be familiar with that procedure. There are a couple of doctors in CA that do the procedure(I think) they might be willing to chat with your GI and walk him through the steps. I followed Dr Borody's protocol which I can also send you. He is based out of Australia and has a clinic, you can get in touch with them via phone, I've spoken with his head nurse. His procedure is administration using the colonoscopy followed by 10 days of enemas. Another way to do it is through the NG, a doctor in Duluth, MN who does that procedure as well.
I never went through a doctor as none would treat me this way, hospital boards refused, so I did them at home!
If you PM Beth22, I believe she might have contacts that your doctor could get in touch with.
Also, check through the doctor section, I think you'll find some names there too.
All the best.

[beth22]

Dawnie - I sent you a pm.

[JenniferH]

I'm so sorry Dawnie, at least now you have a diagnosis, and now you can focus on getting proper treatment to rid yourself of this beast! Too bad you can't just skip the vanco, and just do the stool transfer

[dawnie31]

thank you for your messages,

well I can't stay away from vanco caus I have cdiff and I can't take vanco anymore cause it makes me weaker and now I have a candidosis on the tongue and get more D!! I have trifulcan for the candidosis but I don't know if I can swallow it with the vanco. I am going to paris to see a specialist who is doing stool transfers and see what he can do for me, as my GI here won't do it because he is not "abilitated"...
Hope the new guy in paris will do it for me, I am afraid to die as I am soo tired and weak... It seems the doc won't do nothing and are not avle to see that I am suffering, it is ok for them although you get D 15 times a day with deshydratation you can stay at home and go working if you have D and get nausea all day!!
Am I the only one to feel abandonned?!
sorry to vent but I really needed to.

[beth22]

My mother took Diflucan while taking Flagyl and it helped her. I don't think it is a problem with vanco either. If it is too much to take at once for you, can you space the two pills apart? Maybe take the antifungal a couple of hours after the vanco? Vanco gives me D too, especially in the beginning. If the specialist in Paris can't help you, perhaps he is in touch with one of the other European doctors who do this. Ask him. Would it be possible for you to travel to another country? I know they do this in Norway on a regular basis. Or, perhaps you could get in touch with one of the doctors in NY who does this. I saw some listed on the doctors page. I know traveling is very difficult when you are sick, so hopefully the Paris specialist will be able to help you. There is always the home protocol from Australia (Dr. Barody). Don't give up. I have felt like you many times in the last 3 years. I'll be praying for you to get this resolved.

[Kathy George]

Dawnie, Do you have Dr. Borody's Home Infusion Enema Therapy Protocol. If not, I would be glad to send it to you. I did this method and it cured me. I couldn't leave my house for many months due to c-diff and was at wits-end, so I decided after much thought and research to do these infusions. Just pm me and I will be glad to send you the instructions. Take Care!!!

[dawnie31]

kathy,

I already have the borody'a method you sent me, but I don't know who to take as donor and I wanted to see if an expert could teach me more about this procedure, apparently the professor I am seeing in paris wednesady is aware of this techniuqes and has practiced it on 15 patients, that'a why my GI told me in toulouse, the guy in paris send him the protocol but my regular GI is not wanting to it to me because of the variouise regulations of hospitals, as it is still an experimentla procedure, it needs agrements in france to be done, and it seems to be complicated... maybe the paris GI can have this agreeement more easily than the other as he has written a book about cdiff and other infections and the role of the intestinal flora and the immune system. Mine seems to be very compromised, so taking antifungal and antibiotics won't hepl me cured, just ease the symptoms a bit...
I will do the borody procedure in last resort.

[dawnie31]

hello

I came back from Paris, where I saw a cdiff specialist, he wants me to continue the vanco and he prescribed me questran, but I don't understand, because it seems that questran prevent the vanco from working... so I don't know what to do. if I relapse the specialist wants me to do stool transfer but only if I relapse another time, I am tired to wait to see if the vanco will work or not. I have a 6 weeks taper, it's so long. He also told me that the vanco seems to work but I keep on having pb because of IBS along with Cdiff so it is difficult to see if it is still cdiff or just IBS as my case seems not to be a severe case of cdiff infection, but that I was a chronic carrier of cdiff and it shows up from time to time without causing major damages to my bowel. He says otherwise I should have had bad fever, blood cells increase and inflammation in the bowel. So my D and pb are more likely to be post infectious IBS with a non severe case of cdiff... It is a bit wierd, as if he wants me to get rid of cdiff if vanco does not work...
has anyone took vanco and questran toghether? does questran works for recurring cdiff?

[Kathy George]

I took Questran many years ago for IBS. It helped with the "D" plus helping with my high cholesterol. It's not unheard of to take Questran along with Vanco. I did when I had C-Diff as well, but it was not as effective as when I just had IBS. I remember my GI checking to see what other medications I took at that time as he said it can interact in a negative sense with medications such as diuretics, birth control pills etc. Something to discuss with your doctor. Good Luck!!!!

[Bobbie]

Questran "binds" other meds. so take it as far apart from the Vanco.& other meds. as possible. On his 2nd bout with C. diff., Questran alone worked for my son - unusual, however. As Kathy said, check with your doc. & "run it by several pharmacists."