so sorry to hear how it is for you, I can't imagine. I'm glad you don't have strep, that has to be good. "not worse" also good...I wish I had more encouragement.
C. difficile
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so sorry to hear how it is for you, I can't imagine. I'm glad you don't have strep, that has to be good. "not worse" also good...I wish I had more encouragement.
Terri
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@Leeayn Byrd I am so sorry that 1) you are going through this. 2) that it is still going on 3) that there is no end in sight. I am happy though that you don't have strep and that you were at least able to stop 3 times on your way to work. The alternative would not have been good.
Spiky Bugger
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and the (freakin') saga continues!
Went back yesterday to my ID dr. Not getting better, but not worse.
Monday was suppose to be my first day on 1 Vanco every 24 hours, took it at 7 am; Dr appt at 1:00. She started me back on 4 a day, then taper to every 8 hours after 2-3 weeks, then taper, taper, taper - so will be on Vanco another 2 months, at least. I know it's a good thing, I just want to get better, not sit at this stand-still!
Every 2-3 days, I have the horrible stomach cramps and horrible diarrhea, then I'm ok for a couple of days and only having 5-8 bms per day. My "normal DS day is 1-2 times in the morning and I'm done.
So just really frustrated. I feel like a prisoner in my own house. I am afraid to go out much, never know when the pain will hit. I had to take my laptop back to work the other day (it died, it has to have a new system board) and I had to stop 3x on the way and it's only 30 miles! ugh!
Last night was a horrible night, I was about 2 seconds from asking to go back to ER
I know, TMI!
Yes, I am a Costco person, I will check it out. Thank you, Sue!
Oh - strep culture was negative, just have to let it run it's course - sore throat, swollen lymph nodes, cough, snotty, but that is all getting better!
Spiky Bugger
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Leeayn Byrd
Member
Hi all
my latest update.
DX with C-diff on 3/30/2014>
I just finished a 10 day round of Dificid. My ID dr was waiting hoping the Vancomycin would do the trick, but we had to go to the big(ger) guns!
It made me so nauseous, headache, diarrhea worse, just ick! But I stuck it out...... It got so bad, it had me really dehydrated, even though I drink at least 100 ozs of water per day.
about 2 days after finishing the 10 day round, it was almost like I woke up a new person!
I'm doing so much better, thank God! still have some diarrhea, but nothing NOTHING like before.
Still on Vancomycin every 8 hours for at least another month before she weans me down. Seems when I wean down to every 12 hours, then every 24, it gets worse (don't want to say comes back, because it hasn't "gone" anywhere).
So, hopefully, the key for me was the 10 days of Dificid.
Now, we are waiting on my GI doc to schedule a colonoscopy just to make sure there is nothing else going on. I'm a cancer survivor (Breast cancer) and my last colonoscopy showed 8 pre-cancerous polyps, so just doing a double check. I'm not even letting my brain go there!!!!
Thank you all for your support!
my latest update.
DX with C-diff on 3/30/2014>
I just finished a 10 day round of Dificid. My ID dr was waiting hoping the Vancomycin would do the trick, but we had to go to the big(ger) guns!
It made me so nauseous, headache, diarrhea worse, just ick! But I stuck it out...... It got so bad, it had me really dehydrated, even though I drink at least 100 ozs of water per day.
about 2 days after finishing the 10 day round, it was almost like I woke up a new person!
I'm doing so much better, thank God! still have some diarrhea, but nothing NOTHING like before.
Still on Vancomycin every 8 hours for at least another month before she weans me down. Seems when I wean down to every 12 hours, then every 24, it gets worse (don't want to say comes back, because it hasn't "gone" anywhere).
So, hopefully, the key for me was the 10 days of Dificid.
Now, we are waiting on my GI doc to schedule a colonoscopy just to make sure there is nothing else going on. I'm a cancer survivor (Breast cancer) and my last colonoscopy showed 8 pre-cancerous polyps, so just doing a double check. I'm not even letting my brain go there!!!!
Thank you all for your support!
Leeayn Byrd
Member
Oh - and I forgot to update.
I am in the process of Breast reconstruction, which is the reason for all the freakin' antibiotics.
I have had:
12/10/2013 - double mastectomy
1/17/2014 - surgery #2 - close up wounds (they were opening up)
1/24/2014 - surgery #3 - left tissue expander removed - I had pseudomonas, bad!
3/19/2014 - surgery #4 - left tissue expander replaced
3/30/2014 - DS with c-diff, week in the hospital
5/13/2014 - Surgery #5 - both tissue expanders removed. Infection in the right breast, again - this time it was Staph, we caught it much earlier than pseudomonas.
So my next surgery is scheduled for 9/16 for a DIEP flap (using my tummy tissue to rebuild my ****ies). My body does NOT like foreign objects!
I had breast cancer in 2008, chemo, radiation, the whole 9-yards! I waited 5 years to be cancer free before having the mastectomy. The right side is the radiated breast, and if problems occur, they normally happen in the radiated breast. Stupid ****ies!
I am in the process of Breast reconstruction, which is the reason for all the freakin' antibiotics.
I have had:
12/10/2013 - double mastectomy
1/17/2014 - surgery #2 - close up wounds (they were opening up)
1/24/2014 - surgery #3 - left tissue expander removed - I had pseudomonas, bad!
3/19/2014 - surgery #4 - left tissue expander replaced
3/30/2014 - DS with c-diff, week in the hospital
5/13/2014 - Surgery #5 - both tissue expanders removed. Infection in the right breast, again - this time it was Staph, we caught it much earlier than pseudomonas.
So my next surgery is scheduled for 9/16 for a DIEP flap (using my tummy tissue to rebuild my ****ies). My body does NOT like foreign objects!
I had breast cancer in 2008, chemo, radiation, the whole 9-yards! I waited 5 years to be cancer free before having the mastectomy. The right side is the radiated breast, and if problems occur, they normally happen in the radiated breast. Stupid ****ies!
Spiky Bugger
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Dificid didn't work for me and vancomycin gave some temporary relief. Everyone is different.
But seriously, given your health issues and likely future abx use, you need to figure how long you want to live like this and what your Plan B is...and then you need to find the doctors who are on the same page you are.
C-Diff kills more people than AIDS does...and people suffer for YEARS. Some of us get lucky and go for fecal transplants and/or clinical trials of other treatments...and it all goes away.
Btw...you are correct the the C-Diff doesn't "go" anywhere. Dificid, flagyl and vanco kill the mature C-diff, but it has already left behind spores which, in my case, needed only five days after vanco to grow into another case of full blown C-Diff. I'm told this is fairly typical. This could have gone on forever...or until I died from being sick forever.
I'm not suggesting that you do things my way...just that you are prepared, in advance of a critical need, to try a different approach. You don't need to deal with the logistics of finding your Plan B and a doctor who will cooperate while recovering from a surgery. And frankly, I think that any surgeon who would put you through a non-life-saving surgery before you have a good six months or so free of C-diff isn't looking at the big picture. Reconstruction is important for many reasons, but not worth dying for.
But seriously, given your health issues and likely future abx use, you need to figure how long you want to live like this and what your Plan B is...and then you need to find the doctors who are on the same page you are.
C-Diff kills more people than AIDS does...and people suffer for YEARS. Some of us get lucky and go for fecal transplants and/or clinical trials of other treatments...and it all goes away.
Btw...you are correct the the C-Diff doesn't "go" anywhere. Dificid, flagyl and vanco kill the mature C-diff, but it has already left behind spores which, in my case, needed only five days after vanco to grow into another case of full blown C-Diff. I'm told this is fairly typical. This could have gone on forever...or until I died from being sick forever.
I'm not suggesting that you do things my way...just that you are prepared, in advance of a critical need, to try a different approach. You don't need to deal with the logistics of finding your Plan B and a doctor who will cooperate while recovering from a surgery. And frankly, I think that any surgeon who would put you through a non-life-saving surgery before you have a good six months or so free of C-diff isn't looking at the big picture. Reconstruction is important for many reasons, but not worth dying for.
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Spiky Bugger
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Has anyone heard from @Leeayn Byrd ?
I can't believe she has been MIA for so long. Is she on any other sites?
Negative Nellie that I am, I am concerned that her surgeon went ahead with a procedure that required ABX while she was already dealing with uncontrolled C Diff.
I saw an otherwise well-informed PA today who was sure that C Diff was treated with Flagyl, Vancomycin or Dificid and people responded and it was a done deal. I don't think she was aware that people deal with this for YEARS...and that for some of us, none of those medications ever kill the spores, so reinfections keep happening.
I can't believe she has been MIA for so long. Is she on any other sites?
Negative Nellie that I am, I am concerned that her surgeon went ahead with a procedure that required ABX while she was already dealing with uncontrolled C Diff.
I saw an otherwise well-informed PA today who was sure that C Diff was treated with Flagyl, Vancomycin or Dificid and people responded and it was a done deal. I don't think she was aware that people deal with this for YEARS...and that for some of us, none of those medications ever kill the spores, so reinfections keep happening.
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kirmy
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So you got a second medical opinion? What did she say?
Spiky Bugger
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Well, she didn't seem convinced that C Diff was a possibility, but she liked me and wrote an order for stool test. And retested urine which, as usual, was negative with trace amounts of blood. (That's me on a good day.)
ETA...Well, she didn't like me that much because she didn't order the ONE test I really wanted. Going back today.
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brooklyngirl
Yankee gone south
While you're asking about MIA ppl, anyone heard from @ProteinSnob ? I get nervous when ppl dealing with serious medical issues go missing
Spiky Bugger
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Btw...C Diff testing. As @Larra , I think. Mentioned, there is a real problem in diagnosing this stuff.
In fact, Quest will soon be dropping on of the old standby tests because more than two out of three times, the test gives a false negative.
As I understand it...and that usually means nothing on scientific things...the test we now want is:
Clostridium difficile Toxin/Glutamate Dehydrogenase (GDH) with Reflex to PCR
Question 2. What is the new test being introduced for C difficile testing?
This new test is a rapid, membrane enzyme immunoassay that simultaneously detects C difficile glutamate dehydrogenase (GDH) antigen and toxins A and B in a single reaction well. It is a manual cartridge-based test that requires no instrumentation. GDH antigen is a metabolic enzyme expressed at high levels by all strains of C difficile and some other Clostridium species.
Question 3. What is the reason for introducing this new test?
Studies have shown that EIA testing for C difficile toxins A and B lacks diagnostic sensitivity; some studies show sensitivity as low as 31%. For diagnosis of C difficile infection, it is recommended to use either 1) nucleic acid amplification testing (NAAT) or 2) a combination of GDH antigen and toxin detection with NAAT confirmation of discordant results. The C difficile toxin A and B EIA assay will eventually be discontinued by Quest Diagnostics due to its relatively low sensitivity.
In fact, Quest will soon be dropping on of the old standby tests because more than two out of three times, the test gives a false negative.
As I understand it...and that usually means nothing on scientific things...the test we now want is:
Clostridium difficile Toxin/Glutamate Dehydrogenase (GDH) with Reflex to PCR
Question 2. What is the new test being introduced for C difficile testing?
This new test is a rapid, membrane enzyme immunoassay that simultaneously detects C difficile glutamate dehydrogenase (GDH) antigen and toxins A and B in a single reaction well. It is a manual cartridge-based test that requires no instrumentation. GDH antigen is a metabolic enzyme expressed at high levels by all strains of C difficile and some other Clostridium species.
Question 3. What is the reason for introducing this new test?
Studies have shown that EIA testing for C difficile toxins A and B lacks diagnostic sensitivity; some studies show sensitivity as low as 31%. For diagnosis of C difficile infection, it is recommended to use either 1) nucleic acid amplification testing (NAAT) or 2) a combination of GDH antigen and toxin detection with NAAT confirmation of discordant results. The C difficile toxin A and B EIA assay will eventually be discontinued by Quest Diagnostics due to its relatively low sensitivity.
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Larra
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While I can't quote exact numbers and 31% seems low to me, there is no question but that there are a lot of false negative tests for C diff. So, if there are better tests in the pipeline, they would be very welcome.
Now, if they can just develop better treatments! The strains of C diff in this country have developed resistance to the drugs that used to be very effective (flagyl and vanco), making C diff very difficult to eradicate nowadays. And those damn spores are not killed even by some hospital room cleaning methods, get all over anything in the room, and survive for a long time. So, stay out of the hospital as much as possible, and don't take antibiotics without a good reason.
Now, if they can just develop better treatments! The strains of C diff in this country have developed resistance to the drugs that used to be very effective (flagyl and vanco), making C diff very difficult to eradicate nowadays. And those damn spores are not killed even by some hospital room cleaning methods, get all over anything in the room, and survive for a long time. So, stay out of the hospital as much as possible, and don't take antibiotics without a good reason.
