Seeing Dr. Kelly. Questions about seeing a doctor.

[Dianlynn]

I'm a 52 year old female who got C Diff after using Levoquin after having cellulitis in my cheek. I did 5 days of Flagyl which didn't really work. I have a few questions and would love your help.

I'm on day 12 of 14 of Vanco and then a taper. I'm doing ok but eat pretty restricted but that's normal I guess for now. Some of you may remember my GP had me on 500 mg x 4 of Vanco and thanks to you all, I got her to switch to 125 mg. I am terrified to relapse but have a long history of difficulty with infections so I'm rather worried. I know you can not get a FT until you've had at least 2 relapses. I am seeing Dr. Kelly in a few days. I honestly think I may end up with a FT. But I would love your help.

Does anyone know her?

What are the most important questions I need to ask?

There are only 3 doctors in MA who do FT. Dr. Gill, Dr. Hohmann, and Dr. Dr. Lamont. Getting in to see those 3 are nearly impossible! They are booking months and months out.

Why does it take so long to see a CD specialist?

Why are there so few Gastro people who do FT?

Thank you. I'm still new and trying to learn.

[beth22]

I have spoken to her on the phone a few years ago and she was very knowledgeable, helpful and kind. She is a great doctor to see for c difficile treatment.

I would speak to her about the possibility of FMT down the road if you need it and what the requirements are. I would also ask her about foods to eat, probiotics or supplements to take.

Also, ask her what you might expect once you are off medication. I would also ask if you can have your vitamin levels tested because so many of us wind up with deficiencies in vitamins D, B16, B6, A, some with iron deficiency. Best to check it out so that you can start to supplement and build up your strength so your body recover.

[amyc]

Everything I have read about Dr Kelly has been very positive, and congratulations for getting an appointment with her so quickly. Since this is only your first course of medication I would still expect that you will recover and not need the FMT. I would ask Dr Kelly if there would be any advantage to doing a vanco taper or pulse this time since you have enough medication to do one. You must have enough vancomycin to treat 10 people :). I would love to hear what she thinks about VSL#3 or other probiotics once you stop the vancomycin treatment, and if she would recommend taking probiotics if you have to take antibiotics again. I would also ask her for any advice she could offer to decrease the risk of coming in contact with C diff while traveling? I would love to know if community based C diff infections are on the rise in any significant way, but you might not want to ask that last question if you think it makes you sound paranoid :). Dr Kelly was a pioneer in the FMT field, and everybody has said she is wonderful, so I am amazed you could get in to see her so soon.

[roy]

Dr Kelly is well known and much admired in the c.diff world.
She will be horrified when you tell her about your treatment so far.
She might even contact your Dr to prevent it happening again.
Your in very safe hands with Dr Kelly

[Dianlynn]

Thank you!!!!

I think my weight loss of 13 pounds in 16 days was a factor and my bawling my eyes out and sobbing uncontrollably on the phone to the nurse explaining how my doctor over prescribed Vanco and I thought I might not live another month may have been factors in them moving my appointment from mid August to this week. And I wasn't acting. I was in the band aid isle of the CVS sobbing on the phone to the nurse.

She sounds wonderful and I had to get my insurance to allow a gap extention for me to see her or I would have just paid the $500 to get in and get some real advice from an expert.

Again, I thank you for all your ideas. They are so helpful. Love this place. You guys keep me sane. XOXO

[NanciT]

My advice would be to put your history in writing for her, exactly when you were diagnosed and what you were given. Make sure to write down the dose of meds you were given. Write your history of symptoms and what you have now.
Sometimes it's easy to forget all this once you get in there, this way you have it all lined out.

When I was in the middle of all of this 2 years ago, there were NO doctors in my area that did FMT's. Some had done them, but the FDA put more restrictions on them so many stopped. There was only 1 doctor who did them and I waited 4 months to see him. I live in a large area with 2 major teaching hospitals, it shocked me I could not find anyone. There are still limitations.

Dr Kelly has a great reputation, I considered flying there to see her myself 2 years ago.

Wishing you the best
NanciT

[georgina]

Wow , congrats for getting the appointement with Dr Kelly , she is a highly knowledgeable and also has had great success treating relapsing Cdiff.You are lucky to be treated by such a eminent doctor. Praying that she finds the best treatment for you too. Let us know what she tells you.