Need Help Finding a Doctor in Philly PA Area

[Phillygirl]

I am so desperate! My sister has been sick well over a year, hospitalized 4 times, the doctors are HORRIBLE to her! We can't get anyone to take her situation seriously. They prescribe her meds and just send her away, and she never gets well! We keep going back to the doctors, the ER when she is near death and they just say "she is so sick and we must treat the C Diff" and they keep her for a few weeks and send her off! And once the antibiotics run out, it starts all over! This is the most horrible thing I have ever seen. I am so afraid my sister is not going to be able to fight this anymore. We must find someone to help her. Can anyone tell me a doctor we can go to? The 10 we've tried just don't care. We will drive if it's far - we don't care at this point. It's about saving her life now. Thank you.

[beth22]

If you are interested in doing a stool transfer or seeing the doctor who does them, he is in Duluth, Minnesota. Other people fly there from all over the country. It's not that close, but if you don't find anyone else closer, you might want to consider it.

[Phillygirl]

We were just talking about doing that. Thanks for that. I think I saw him listed under the doctor list if I'm not mistaken? Do you know what the success rate for that procedure is?

[beth22]

I was told the success rate was around 85% - but remember this is for RECURRENT c diff, so that is a pretty good success rate. The procedure didn't work for me, but I was in the middle of a relapse when I got it and did not take enough vanco as a prep. I had a different stool transfer done later via colonoscopy, which did work to get rid of the c diff. I have the phone for the Duluth clinic. If you would like it, just pm me and I will send you the information. I know there is also a doctor listed in NY who does colonoscopy transfers, but I don't know if he still does them or not.

[Mommy23]

I pm'd you some information

[Phillygirl]

Thanks so much for the info. I was researching the clinic in Duluth and thats certainly an option. NY is obviously closer, but we'll do whatever we have to at this point. She was misdiagnosed for so many months the 1st time and they were giving her broad spectrum antibiotics which put her near death, literally. So many complications, her gall bladder had to be removed, she's never really gotten well since that time. Now, here we go again, and she hasn't recovered. We just can't find a doctor that cares at all! When you tell them how bad she is, they just sorta shrug their shoulders and totally dismiss what you are saying. It's just unbelievable to me!

[rhona]

I saw the same DR that Mommy23 saw. She refered me to him and he is wonderful! I saw him once, and have talked to him or his PA on the phone quite a few times since my appt. They really know what they are doing. Baltimore isn't too far from Philly. It would be well worth the drive.

[Nancy1]

Phillygirl,
Welcome to the group that no one wants to join, for you and your sister. Be sure to read All Users Read This First, Dr. Borody's article, Dr. McDonald's article (in the FAQ section under Articles by Experts), and all areas in FAQ that interest you. Whew, your sister has really been through a lot!

Aren't folks here great? You have gotten lots of good advice. How awful that you have seen ten docs and no one cares! Having a good doc is half the battle or more in getting over cdiff. I surely hope you find a good one soon. Good luck. Let us know how it goes.

[Phillygirl]

My sister is 40 years old today. We aren't sure how she got it. She wasn't taking antibiotics. She was caring for my grandmother who was in a nursing home and passed away. It was 2 months after that - she got very sick - ended up in the hospital. We can only guess from there. Constant vomiting (is that a normal C Diff thing) and all the rest. After the 2nd hospital visit they gave her broad spectrum antibiotics at that point and then....OMG. They almost killed her. Then they realized what they had done. They figured out what she had. They came in aplogizing....but seriously, they almost did kill her. It took almost 2 1/2 months for them to figure out what she had, and I think she had it for 2 months at least before that. So she was quite sick let me tell you. My mom called me from out of state and told me to fly in - that they said she wasn't going to make it. They finally got her somewhat stablized, but she could not eat and they made her go home. She just vomits (sorry) all the time. (I know I shouldn't post that here). Is that normal? She has never gotten well, never had a normal BM and this has gone on every day now for over a year. She was back in the hospital 3 weeks ago, still tests positive, more vanco and flagyl, but makes no difference. The doctors just send her home. We feel hopeless. I don't know how much longer she can hold on.

[beth22]

I believe that poster Kathy George was on Flagyl and vanco and it did not work for her. She did a home infusion protocol and it cured her. She has been c diff free for over a year. You might want to pm her if you are interested in the protocol or consider doing that. It would be something that could be done at home since your sister is so ill. Traveling might be hard for her.

BTW I most likely got my c diff from visiting my mom in a rehab hospital/nursing home. She was there for a year and many patients there had c diff, over and over again. Those places are not very careful in controlling the spread nor do they warn people about protecting themselves, at least this place did not.

[Nancy1]

Have they tried upping her vanco dose? Some folks need more vanco than others, and it is trial and error until they get it right.

I had nausea with relapses but not vomiting. Good luck.

[Nancy1]

I should add that at one point they put me on both Flagyl and vanco, and I was so nauseated that I couldn't eat at all. I figured I would never get well if I couldn't even eat, so I stopped the Flagyl. (It had always made me nauseated just by itself.)

[Phillygirl]

This time she's taking Vano 4x a day and Flagyl 500 mg 2x (I believe on the Flagyl). She was so sick adding the Flagyl that she barely made it through and couldn't take the last 2 pills. She couldn't keep them down. She has 4 days left of Vanco and she will have been on that for one month. Last time she was on Vanco 7 weeks total. The true test will be in the next few weeks, and if it just starts over again. She has had 3 calm days for the 1st time in over 2 months - now that she stopped Flagyl. I guess we'll see.

[Phillygirl]

Roy, you are so right! You nailed the situation - I am very impressed! I pushed hard that there was an underlying problem right from the beginning. They did take her gall bladder out August of '09, after much fighting from me!!! All of their tests said it was fine. I KNEW it was not! Turns out, it was very diseased! Yet, she still seems to have this nausea all the time. She's had every test known to mankind and they attribute it to the cdiff. Anyone have any great ideas of what would cause violent vomiting? The docs just say the cdiff. Speaking of - anyone have any suggestions for nausea meds- compezine & zofran don't seem to do much good. Regulan along with Adavan in the hospital iv, but cant get Regulan in pill form.

[Nancy1]

Phenergan sounds like a nausea med that you haven't tried.