My Birthday ID Specialist Appt

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jbud70
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My Birthday ID Specialist Appt

Postby jbud70 » Fri Sep 14, 2007 5:35 pm

Well, this will be interesting. I have an appointment with a ID specialist on Oct 8 (which is actually my birthday too, ha). I have enough Vanco to last me until the Sept 27th. I've never made it longer than 9 days without a relapse. This doc said two things ...

1) hopefully, you won't relapse at all, and then we won't have to worry (not holding my breath on that one).

2) if you do relapse, try and hang on until Oct 8th because it would help in his treatment of me to see me when I'm relapsing.

Guess that makes sense. Anybody have a similar experience with docs wanting to see you when you are actively sick?

He was compassionate enough to admit that if I'm so sick that I can handle it before the appointment, he would rx me more Vanco.

Mainly, I'm glad I finally got an appt with a specialist. He said he has treated numerous C Differs too, both hospital and community infections.

Josh

Christina
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Postby Christina » Sat Sep 15, 2007 7:22 am

I have not had a Dr. wanting to see me in the middle of a relapse but have been in a Dr.'s office while relapsing. This was one of many PCP's I had during my C-diff experience as I had to keep firing them. My husband came with me and I was literally curled up in the corner of the exam room on the floor crying from pain. I was also running to their toilet every five minutes. She (the PCP) told me I had IBS and gave me a print out on it along with a script for Bentyl. My husband told her we were not leaving until they took a stool sample so finally they agreed. I never heard so I figured it turned out negative. Meanwhile, I was so sick I wound up being hospitalized for a week.At which point I was still told I didn't have C-diff as all my tests were done while I was on Vanco.I tried to argue with them but it got me no where.After switching to a new GI we found out months later that test was actually positive and when we spoke to the PCP about it she said I'm sorry we just filed in your records and never looked at it.

I'm sure you will have a better experience so don't worry. Good luck with the appointment and rememeber your list of questions.

PS - Happy Birthday in advance!

Christina

jbud70
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Postby jbud70 » Sat Sep 15, 2007 10:55 am

Thanks Christina. That is the one thing good thing about my PCP throughout the ordeal, he always believed me about the relapses and was always willing to prescribe me Flagyl or Vanco when I said I was relapsing. I've read some horror stories about docs wanting to wait for a positive culture before giving out more Vanco (one GP tried the IBS blame game with me, but I was able to convince him otherwise). The ID specialist acutally didn't want to see me without a positive test result, but I had already gone back on the Vanco, so my PCP called him directly and asked him to see me, because he trusts my judgement about it being a relapse and not IBS.

And then he really showed what a good person he is by calling me last night from his home, even though he had the day off, to see how I was doing. He was even a bit apoligetic about not being able to help me more as he just doesn't know enough about C Diff.

All the other GPs I dealt with at that practice seemed so cold and uncaring, but to goes to show you that just having a bit of compassion for your patients is half the battle of being a good doc (even if you are over your head). I think that is something that has been completely lost in our insurance driven healthcare system.

Josh

Bobbie
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Postby Bobbie » Sat Sep 15, 2007 12:46 pm

Josh,
You are so right. Many docs. need a course in Compassion l0l. It means so much to a patient who is sick & terrified. You PCP sounds like a great doc. Many don't know how to talk on the phone anymore -- or refuse to do so.

If you continue to battle C. diff., however, I would ask your PCP to refer you to either a GI or an ID as they see more cases of stubborn C. diff. Unfortunately, many docs. don't believe you w/o a positive culture.

For best test results, you should be off Vanco. or Flagl for 10 to 14 days -- 14 days. (See FAQ-Tests.) Many people become so ill they can't "last" that long.

Good luck.

jbud70
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Joined: Tue Jul 24, 2007 12:33 pm

Postby jbud70 » Fri Sep 21, 2007 1:53 pm

Well, the NP at my ID specialist's office (who I have yet to see), overrode my GP's recommendation to stop taking Vanco after I run out and see if I relapse before my ID appointment, and had him call in another 2 weeks of Vanco for me. So, I'll be covered till my ID appointment.

I've actually talked a few times with ID docs office, and are incredibly friendly and interactive with their patients (not at all what I was expecting from a specialist office). The particular NP I spoke with on the phone (for about 20 minutes!) knew more about C Diff (she actually had it herself, but was in the lucky 80%) than all the GP's I've seen combined. I think that is a good sign that the docs there probably know something about this disease too.

She was also impressed with my knowledge of C Diff (of which I learned most of it from this site), and thought it was great that I am proactive about my health. Another total opposite from what most doc office who seem to turn their noses up at patients who educate themselves (especially from the internet).

Jayne
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sounds promising!

Postby Jayne » Fri Sep 21, 2007 4:58 pm

Josh, So happy to hear that your experience thus far with the specialists office has been good. Sounds promising (I'm almost jealous). But seriously, it's so critical to have knowledgable & kind medical care. That must really make you hopeful.

I'm in the heat of a relapse & dealing with a less than responsive GI. My PCP has really been handling most of this-but he is limited in his knowledge of C.diff too. I meet w/GI next Wed. We'll see how it goes.

Keep us posted.

jbud70
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Postby jbud70 » Mon Oct 08, 2007 6:06 pm

Had my first appt with the ID specialist today. He was great, really friendly and compassionate. No doctor/god complex at all. Spent 1/2 hour just going over the specifics of the disease and treatment options. He has co-authored numerous articles on C Diff, and pretty much reaffirmed everything I've learned about C Diff from this board. I brought a bunch of stuff I had researched and printed out, but didn't need to even take it out. He brought up all the treatment options I've read here and on the web: tapering, pulsing, IVIG and fecal infusions. He said nothing is off the table, it's all about getting me cured.

The first thing he wants to try is a month and 1/2 taper/pulse (I've already been on Vanco for 25 days prior to seeing him) with a chaser of the stuff that binds the toxins (is it called Questran?).

So, I'm really relieved to finally be under the care of a knowledgable and caring doctor. It's a great birthday present.

One thing he mentioned that was really intriguing was that he knows a research doctor in Chicago who has just submitted for a patent on a vaccine for C Diff. It's hasn't entered into human clinical yet, so it's a ways off. Has anyone heard news of this?

Josh

Christina
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Postby Christina » Mon Oct 08, 2007 6:56 pm

There are already vaccine trials underway for a C-diff vaccine made by Acambis as there were in 2001/2002. I'm not sure who in Chicago might be doing so. The researchers there I know are Dr.Gerding and Dr. Johnson. No known others I am aware of. It could be this.This is very new.Not sure though.

http://www.sciencedaily.com/releases/20 ... 125257.htm


I'm glad your appointment went well. Good luck with your taper/pulse.

Jayne
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Things are looking up for you

Postby Jayne » Mon Oct 08, 2007 10:38 pm

Josh, So happy to hear the appt went well. That's got to make you feel so very hopeful. My drs too used Questran along w/ABs to treat CDiff (only be careful if you don't have a bm for even 1 day as the Questran can bind things up too much too - if that happens check w/dr asap). Keep us posted & I'm gald to hear you're in good hands.

My last visit w/GI was on 9/26 & went surprisingly well. I'm having double scopes on Weds 10/10 so we'll see what he finds.


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