Straight talk from a Dr is seeming impossible.

[Jenny]

I posted in TMI about a problem I am having. I went to the ObGyn today and they examined me. I thought I may have a gartners cyst but they won't even speculate. I am scheduled for an MRI on Saturday. This is just torture. I truely am beginning to wonder how much all these Dr's really know, especially the GI's and ID's, but now the Ob's will this ever end?

Jenny:(

[cindym]

sorry to hear about your problems. Sorry to say most of us have experienced the "I am not sures" and the "I don't know's". I have come to realize that doctors are only EDUCATED guessers and if it is not straight out of a textbook they merely guess. SUCH IS LIFE.......THANKS CDIFF!

[fire7163]

If I only had a dollar for each time in the ER behind closed doors that I've heard the Doctor say " does that look right to you , what do you guys think ?" The best part is that they are serious !!!. You've got to remember
even after all of the schooling, they don't have all of the answers and are only human.

[Bobbie]

Jenny,

I so agree, & most of us with C. diff. feel the same way. I long for the "good old days" when the believed a doc. was "always right." Not so, anymore.

Have posted this on the site many times: Doctors give you an educated, experienced, expensive guess. Few docs. (even in the same field) agree on anything.

Remember they are just people (altho. some don't seem to realize it). Too bad they aren't paid on a "correct diagnosis only" basis.

Because of all the med. mal. lawsuits, many docs. tell you all the "horrible maybes" - just in case. There are so many meds. "out there" now that docs. find it hard to keep up. Usually, by the time they are out of med. school, the meds. they know about are obsolete so they rely on the PDR & drug. reps. And, of course, we have all these wonderful stronger & stronger antibiotics!!

Best you can do is come in with a complete list of questions - 2 copies. Give one to your doc. & you keep one & go down the list with him/her. (Keep the list as concise as possible.) Stay away from ER's unless it's a real emergency (& there are many) because you often take "pot luck" with docs.

If you think a doc. is wrong, seek another opinion.

Good luck.

[cindym]

where I screwed up was not going to Med school and getting my license and prescription pad!......I guarantee you if I had things would be much improved in my life! ha!

[Jenny]

Thanks so much guys for your responses, you're all so right. I just have never been in this position before now, when Dr's don't know how to medicate or what a particualr problem maybe. RA was easily diagnosed as was c diff, this one is new though. As for meds I agree I think most don't know unless it's an obvious infection such as strep or pneumonia which is what it always used to be with me. I never went to the dr unless I really had to. It's all just very disappointing. We put so much faith in them that that are going to be our cure all, get better pill and they are just human as you say. The best I can do is educate myself!

Thanks

Take Care

Jenny

[rnee1974]

First doctor I went to said IBS,which I had already self diagnosed myself with it after food poisoning.I was in tears,thought at this point nooo this can`t be right.8-10 times at the bathroom with D just in the mornings,cramping like this??I told her I was the opposite for almost all my life,maybe 1 every 4 days.She gave me pills for the cramps and told me to go get something for the D but did send me in for samples.She did ask me if I was ON antibiotics,but hadn`t been for 2 months prior.She was surprised herself when results came back.This was an emergency doctor so since then have went to others but only got real answers after being sent to a microbiologist.I feel like I`m in good hands now cause they will be re-evaluating till all is clear.

[Kathy H.]

After reading through most of the threads I feel very lucky. Years gone by with some gained experience in the C-Diff field has helped.

When I was in nursing school learned a tid bit about MESA, and C-diff. Nothing more than a blurb in infection control arena. However I knew of closed ward for Military at Leavenworth for MERSA. So all the medi-s there were talking about time in years before MERSA entered the main-stream pop. in US. That was 20 odd years ago, and today our school nurses will need to ramp up education as of the age infrastructures and antibiotic tx. trends.

C-diff, nothing on my screen until I had grandchildren, recently, and then not much. I threw the info. into the bag of roto virus and left it there until about 7 weeks ago. Amazing! I am still kicking myself. Let dentist give IM of antibiotics, and Clyndo oral. Just didn't know any better.

Sister in law recent from Nursing school, smarter and wiser. She is more a naturalist. And to be honest the pharmo. courses are more informative about the consequences of mega-cillins' treatments, and what that means over the next ten to twenty years.

I have never tested post. for C-diff. That's the crux of being in small town with shipping lab to far off centers. Too many varibles in proper collections and tests. No one in hosp. wants the lab at site, for obvious reasons. By the time I could claim a non-comtaminated specimen, I was already saturated with flagyl. Again I went back to sister, with doubts about C-Diff. I asked what was the difference with the jump to TX. I got as compared to others who linger at the mercy for a positive test.

She was graphic, so I will paraphrase. Once you see it, smell it, or attempt to glean a specimen from collection you will never forget it.

White counts vary. The symptoms vary. But the specimen is sour and fetid smelling. She used my under one year of age grandchildren as example. They remain non-reactive, odor similar less intense. As after tots swimming or out in the heat for prolonged periods, then using bathroom. Of course the active spores produce more concentration of C-diff gas in adults than noted in the non-active process of tots around 1 year.
I could not relate to that, until she asked me to remember the scent to gangue green (sp.) in animals or patients I had cared for.

The collector will by all accounts be amazed at how heavy and mucus ladden the collection is. Because it is damn near impossible to scoop onto the collection tool. The muscus just pulls it back off the tiny implement.

So I, stupid person, ended up at ER. 10 days of god-awful flu I thought.
But so dehydrated and potassium low I was scared. But sister-inlaw made sure I described the D. in detail to the staff, and to tell them she thought that C-diff. was the cause. They didn't blink an eye. Said starting on flagyl now, not waiting for pos. collection.

I think back on this, and I know I would have avoided any details about D.
I would have focused on the gut pain, which was worse right sided. (That would have confused the picture to say the least.) It was after the the main symptom was I hope I tactfully described, they inquired about anti-biotics recently. I was positive for that too. So it was a done deal.

When the doc. mentioned OTC anti-D. meds. I told him that had just increased the pain of cramping, and wouldn't take. He nodded and said that fits too.

The reason I recall this is, I wonder how many people go longer periods untreated, because we are polite, and cannot talk about the changes in
D. that are not in keeping with flu or other illness.

I know of several young people now where celliacs and H-plori is considered first and have similar symptoms. Once on med. for C-diff the truth evolves from the young person who could not or would not aptly describe one of the major symptoms.

Roy I think has great perspective from the UK side. Kay-Daver have been reading your threads, pretty fantastic background and I think you will have some good info. Please stay on site. This was the only place where I was able to glean rapidly the info. I needed. I thank Nancy and all others so much more knowledgeble than me. The teaching in terms of the seminars from ent. docs. were very helpful. I didn't get that in school.

While you guys probably hear this often, know this. At some point my white counts were so elevated I couldn't think my way out of a wet paper bag. For a nurse to have to contemplate the ankle bone is connected to the... you get the picutre. The threads here put it all into perspective for me.

Currently my doc. says she hasn't seen any cases where the patient wasn't over C-diff in two to three TX.s. I was getting that sinking feeling. You know the one, is it in my head? Am I lazy because a.m.'s are the worst? Or am I personally doing something to reinfect my self. She has been the best with patience. I guess we will learn together.

Thanks to all please continue to post- Right now you are the life line. My home state of Treatment is one of those states not routinely reporting to CDC. I've been to the WHO, the NIH. The studies are ominous for pandemic, but really no trully recent stats. just guesses.

Thanks again.
Kathy H.

[fire7163]

Kathy:

Welcome to the wonderful world of C-Diff. The odds of you knowing more on this issue than your Doctor are very good.I've reffered many of the MD's that I've dealt and worked with to this site. All of them have the same comment, " I didn't know that " Most of the MD's we deal with have little knowledge of C-Diff and it's 100+ variations. I actually won a $ 20.00 bet with a covering GI who told me that I wasn't positve. I knew better and should've held out for $ 100.00. The best thing that you can do is refer them to this site and find a Doctor who is willing to listen to you and what your body is saying. This illness is just like a roller coster ride of up's and downs. The only difference is you have no idea when it ends. I've said this numerous times" you control your life, not C-diff, don't let it make you a victim". You've got to realize that you didn't get sick overnight and it's going to take a lot of time and effort to get well, and that's not going happen overnight. The gains you are going to make are small, but they all add up to getting well. As for relapes, they are fairly common, don't panic and get depressed, just deal with them as a bump in the road. Beating this is just like climbing stairs in a high rise...take 1 step at a time and don't worry about where you've been, or how much farther that you've got to go, just worry about the next step...everything else will fall into place, just don't or give up.

Fire

[Kathy H.]

Jenny, Cindy, and Fire.

Jenny hope all is better today. Fire and all posters thanks for that encouragement. Fire, hope you should win each bet. Still we are now living in the land of wanting advocates to refer to. Would I have even gone to the ER until farther along had it not been for the knowledge of another, who might be a nurse but a good civilian to ask the right questions. Update us Jenny on your trip through the medical world you are traveling.

Kathy

[cindym]

There are NO definites with cdiff. It is all a game of wait and see what will work and what will not work. If it doesn't work it is off to something else. But basically from all the things I have read until your body is willing to recoup on its on it is a medical mystery. Infusions may cause cdiff to go into remission but as far as curing it I have my doubts as nothing has been proven to kill the spores --only to keep them in check. Any of us are at risk (even after infusions) of taking antibiotics ever again because the spores are lying dormant just waiting for the opportunity to grab hold again for another roller coaster ride. After 7 years I am beginning to think cdiff loves me more than my husband does! ha!

[Hua Kul]

Hi Kathy H. You perfectly captured a vivid word-picture of the d, it was exactly that way for my wife's three bouts. The good news is we live in a large city where the lab was used to testing accurately. The bad news is they had so many opportunities to perfect the testing.

You wrote, "Once you see it, smell it, or attempt to glean a specimen from collection you will never forget it." and "...she asked me to remember the scent to gangue green (sp.) in animals or patients I had cared for."

It's timely that you should mention the smell of gangrene. The gangrene toxin is produced by another Clostridium bacteria, c. perfrengens. This was part of the information that led me to try giving my wife EDTA to try to neutralize the c. diff. toxins, because I found a study showing that EDTA neutralized the gangrene toxin both in vitro and in vivo ( http://www.pubmedcentral.nih.gov/picren ... obtype=pdf ).

So far it seems to be working for her, but I would only know for sure if I withheld it and she got the d back, which I won't do. God Bless.

--Hua Kul