Dr Coleen Kelly's suggestions today to me for C Diff

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Dianlynn
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Dr Coleen Kelly's suggestions today to me for C Diff

Postby Dianlynn » Thu Jul 21, 2016 5:08 pm

To review, I am a 52 year old professional female who received a CDiff diagnosis on July 2 after taking Clindimycin and Levoquin for cellulitis in May. Today is day 14 of Vanco. I've lost 15 lbs in 20 days and am eating carefully and having some anxiety, depression and insomnia. It's been hell. My GP over prescribed Vanco (500 x 4) so I was desperate to see someone who knew how to treat CDiff. I was all alone but then because of you, I found this doctor. You guys literally saved my life.

Everyone I called was booking in September and October but by some miracle from the good Lord above, I got an appointment with Dr. Coleen Kelly in Providence, RI two days after my phone call. Perhaps my sobbing over the phone was a factor and telling them about what my doctor did? And even more good news. I was told she was not in my network but I was going to just pay out of pocket and then my insurance called and said they made a mistake. She is in network so I won't be paying out of pocket. I could cry for joy.

She is everything you described and better. Compassionate, caring, a listener, thorough and humble. She spent 45 minutes with me. Below are her recommendations. I brought the CDiff discussion printout and read all your comments to her telling her what a privilege it was to just get in to see her. She said, "You have no idea who nice that makes me feel. Some patients have left me very nasty reviews. This is wonderful". So she heard everything you all wrote about her and it made her smile.

Here are her suggestions

1) First you do two weeks of Vanco 125 mg 4 x a day. I'm done that. Now I do a Vapor Taper for week 3 & 4 which is 375 mg Vanco at once every 3 days for 2 weeks. Then 250 mg at once for 2 weeks. Then 125 mg all taken at once for one week. That is a full 8 week taper and different from other tapers I have read here. She said it allows the spores which are hiding to come out and get hammered.

2) She said is is very important I do the Kefir at the same time. She said there was a study that Kefir is as good at eliminating CDiff as Vanco. The study said 5 oz 3 X a day one hour before meals or 30 minutes after. I'm doing way more than that but Kefir is one of the few things that works for me so it keeps my weight up. This makes sense. Fill the gut with good bacteria throughout the day.

3) No PCR stool testing. She said it is useless and flawed and the diagnosis for her is made based on how the patient responds. Given I have fairly formed stools, a significant decline which includes very WD, mucus, temperature and feeling very sick means I call her. Based on that conversation, she will decide next steps. She actually ripped up my CDiff stool paperwork in front of me. To her, it's about how the patient responds during the taper.

4) Take Culturelle and Florastor daily not near the Vanco. She did not recommend other probiotics but was very emphatic about Kephir. To her, that is the more important thing for people to drink throughout the day.

5) If this fails, then we go right to a Fecal Transplant. She is booking them a week out or so. A week? Are you kidding me? I figured 6 months. How is this even possible?

6) If all goes well, I see her in mid September and then do a colonoscopy in 6 months with her. Ha! I'd love to get there. Some days I thought I was going to die.

I cried in the car on the way home with tears of joy. CDiff makes you want to kill yourself but now I have hope. I have a doctor who knows what she's doing and who cares. I have a plan so that even if I fail and regress (and I'm very prone to infections so very worried), I have someone who is so incredibly knowledgeable and caring to guide me.

Many thanks to all of you for directing me to her. I just love her. She's not like most doctors. She's like a friend you want to spend the day with!!!




I told her of my GP having another patient now with CDiff and she said, "Send them to me". She wants to help others. We talked about her children.

amyc
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby amyc » Thu Jul 21, 2016 5:44 pm

WOW thanks for that report. Good for you that you got in to see her, and I am going to keep a copy of that treatment plan in case I ever need it. Unfortunately the taste of kefir makes me puke, so it would be very tough to follow that portion of her advice. It's amazing how a kind and caring doctor can make such a huge difference for patients. Maybe they should teach that at medical school!

NanciT
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby NanciT » Thu Jul 21, 2016 6:41 pm

So happy you had such a great visit, more importantly that you feel you are getting excellent care. So many of us suffer through GI's who don't know how to treat CDIFF.
Sounds like you are on your way.
Hopefully, the Vanco will take of this for you! Keep us updated!
NanciT

beth22
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby beth22 » Thu Jul 21, 2016 7:07 pm

It sounds like great advice. I am going to try the kefir myself, since I am testing positive for a month now. Good your insurance covered it too. She is definitely a kind a caring person. I never saw her, as I live in CA, but I was at my wits end a few years ago and she responded to my e-mail and phoned me and we had a good conversation and she gave me some valuable advice. I'm glad you went to her.

susant
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby susant » Thu Jul 21, 2016 7:25 pm

I'm glad she said that about the tests. I absolutely agree after being "negative" for five months then getting a positive. I do not trust the tests. I knew something was wrong for months but the tests were saying otherwise. She sounds amazing

AllisS
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby AllisS » Thu Jul 21, 2016 7:50 pm

That's great! Glad it turned out so well. Based on what you wrote, I'd consider going to her myself, should I need future help (which of course I hope I don't), since geographically she's not far from Boston.
If your illness was preceded by use of a medication, e.g., an antibiotic, please fill out an FDA Adverse Event Report at http://www.fda.gov/Safety/MedWatch/default.htm

Dobies#1
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby Dobies#1 » Thu Jul 21, 2016 9:22 pm

Wow she sounds excellent! So glad you got in with her! Hang in there! XOXO!!
I have a question about Kefir if anyone knows the answer. Is the kind you get at the store in the yogurt section any good? I think the brand I've seen is Lifeway? Is that any good or does it need to be like home made?

beth22
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby beth22 » Thu Jul 21, 2016 9:32 pm

Homemade is always better, but Lifeway is good and what most posters have used. I have a bottle in my refrigerator to try as well. It's supposed to be 99% lactose free.

nickii52
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby nickii52 » Thu Jul 21, 2016 11:26 pm

Life way is good, that is what I uze. I am on this pulse treatment, I am in my 5th week will keep you posted

roy
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby roy » Fri Jul 22, 2016 4:29 am

Home grown can be made with coconut milk, soy milk and many other flavours.
It's probably a lot stronger than shop bought.
Thanks for posting Dr Kelly treatment plan.
I will copy it and put it into another sticky post so it does not get lost

NikaNik
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Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby NikaNik » Fri Jul 22, 2016 9:46 am

She sounds awesome! So glad you got in to see her! I'm curious, though, why she would want to do a colonoscopy six months later since some posters have expressed concern about relapsing from the prep?

Dianlynn
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Joined: Sat Jul 09, 2016 4:55 pm

Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby Dianlynn » Fri Jul 22, 2016 3:51 pm

Thanks, everyone. She just said to because I'm 52 and have never had one before. I am not planning on having one for now.

She called me today and thanked me for the flowers I sent her. I think she deserved the biggest bouquet of flowers I could order so I sent it to her and she was so surprised.

As I said, she is the best!

Day 2 of my vanco taper and I'm feeling ok. I take 3 more pills on Sunday. I'm praying this will go well but no matter what, I have her promise she is going to be there for me and that is priceless.

Bobbie
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Re: Dr Coleen Kelly's suggestions today to me for C Diff -

Postby Bobbie » Fri Jul 22, 2016 5:10 pm

Copied in CDI - Tapering, Pulsing, Other Methods of Treating c diff. Unlike the other forums, the latest info,is last.

Thx. Dianlynn. I have heard good things about Dr. Kelly, and quite a few posters have gone to her with good results.

roy
Administrator
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Joined: Sat Aug 02, 2014 1:05 am

Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby roy » Fri Jul 22, 2016 6:44 pm

I copied in treatments and made it sticky.
It will stay at the top of that forum for all to see.
I wonder if she would be willing to write an article like Dr Barodys that we could include here.
OR
Join the site!

beth22
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Joined: Tue Apr 07, 2009 2:23 pm

Re: Dr Coleen Kelly's suggestions today to me for C Diff

Postby beth22 » Fri Jul 22, 2016 9:23 pm

She did join the site and posted a couple of times years ago - probably circa 2009.


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