Boy am I mad!!!!

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Christina
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Boy am I mad!!!!

Postby Christina » Tue Dec 06, 2005 9:56 pm

When this relapse occured in October I went to try a new Dr. after begging her to do a C-diff test because I had D. and severe cramping.She agreed to do it but said it was a waste of time and money because there was no way that I still had C-diff.So I went to th ER and was put on vanco without a stool test.Then as you know I was put in the hospital for five days by a new GI doc who said I could not possibly have C-diff anymore and a series of GI tests were done.All came out fine.I was even tested for C-diff and it came out negative because I was on the Vanco.Anyway,today I decided to call that Dr.'s office to find out about that test because I never heard anything.The nurse pulled the report and told me it came out positive for C-diff and toxin A!!!!!!They never even called me. That was on October 21st.So I didn't need to spend 15,000 dollars in the hospital for five days because like I tried to tell them it was C-diff !!!!!!!!!I'll bet all of those tests made it worse.I am really, really ticked off!!!!!
Tomorrow I will go pick up the lab results to see for myself.I E-mailed Dr.Kelly and he said at least we know we're treating the right thing.

Bobbie
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Postby Bobbie » Wed Dec 07, 2005 2:06 am

This has happened to me and probably almost everyone else on the site, Christina. Never assume everyone in the medical professsion (or any other profession for that matter) always knows what he/she is doing.

Don't count on a doctor's office or lab calling you about tests. After several days, call them.

Last year I went to an immunologist. Even though I had all my health issues and symptoms on a computer printout, the doctor decided to run more tests after my second visit. When I didn't hear the results, I called. The nurse said, "Oh, you probably just have Lupus. Come back in six months." When I returned, the doctor said she shouldn't have told me this and explained since I have Reynaud's Sydrome, I will show signs of Lupus if I have it or not. (By this time, I'd found this out on a medical web site.) He wanted me to come back again as he said, "We've just tested one branch on the tree of immunology." When I asked how many branches were on this tree, he said five or six. I think not! I'm done climbing branches.

When I had pneumonia again in l999, I managed to get a sputum speciman. The lab lost it, and by the time it was found (I called numerous times from my hospital room), I had been on Levaquin for five days and developed C. diff. again. Because they were able to identify the bacteria in the culture, a narrower spectrum antibiotic probably would have been as effective.

I've had similar previous experience and lost a baby in my seventh month of pregnacy due to a wrong diagnosis by one of the best (supposedly) OB's in town.

Never assume; call and check. The field of medicine if full of land mines. It takes a lot of skill, luck, and experience to avoid even some of them.

cindym
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Postby cindym » Wed Jan 04, 2006 12:21 am

Christina- I had an infectious disease doctor do blood work on me and called me and told me all my counts looked good etc. My regular doctor at that time wanted a copy of the report and called his office to have it faxed to him and he immediately called me and told me my blood sugar was sky high and he wanted me in his office immediately..........I called the ID doctor and asked him why he didn't tell me about it and he merely said "Well I wasn't looking for that!"-------Can you believe that? Thank God my blood sugar was elevated due to cdiff (which I have found out is not uncommon) and by the time I got to my doctor and he did testing all was normal again. I have learned ANYTIME I have bloodwork done I request a copy! I could tell you several other instances of failure to disclose pertinent information to me about test results but I will not bore you with details.......Just view this as a learning experience and take control of your own care and demand copies of ALL TEST results, Xray reports etc. I was sick for over 2 years with an infected appendix and enlarged gallbladder that clearly had shown up on cat scans but never told to me. The appendix I thought had been removed 15 years earlier!
Now, I get copies of EVERYTHING!
Cindy

angelmom
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Postby angelmom » Wed Jan 18, 2006 12:18 am

I guess I am lucky because my GP knows that I also have docs at the University of Iowa looking over his shoulder asking for tests and copies. I am also in a study at the National Institutes of health--mention that and docs tend to not be lax. And, with getting an $8000 (yea, 8 thousand-ridiculous, huh) infusion every 2 weeks they tend to pay attention. However, I had a bad staph infection that went undiagnosed and that is what landed me in the hospital w/ antibiotics-one of which resulted in c diff! I should have called my Iowa docs sooner....So, even with all of the checks and balances that I have docs can still be sloppy. You cannot believe how much of my own research I do and how often I am picking pharmacists brains!
Linda

Christina
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Postby Christina » Fri Feb 03, 2006 7:16 pm

I found out today that the Dr. who put me in the hospital back in November wrote a letter to my Dr.'s here saying that I was basically crazy and needed a psychologist because I can't have c-diff anymore.He asked them to all stop giving me Flagyl or Vanco even if I test positive for c-diff.He sent this to every Dr. I have seen in Ohio for my c-diff including my PCP.No wonder when I saw her a few weeks ago she treated me like **** and wouldn't even treat my yeast infection.I went to pick up my records because I found a really good new PCP and in it was this letter.I'm afraid if he gets this letter somehow I will not be able to go to him either.I have been crying all afternoon because through this whole thing the medical community here has just totally let me down.Any ideas what to do now?
I can't move.I love living here other than this problem and my kids have school, friends and lots of activities here.My husband has a very well paying job and great benefits.I have so totally had it and am really really ticked.How could he do this?

jennie
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Postby jennie » Fri Feb 03, 2006 7:50 pm

Christina, glad to hear you are back home and had good meetings with docs there. It is beyond belief, ignorant doctors, who are stupid enough to go ahead and "share the word" on a condtion they know ZIP about, and have done nothing to become informed about. If I were you, I'd go ahead and email them the New England Journal of Medicine and the CDC report, so that they can see this is what happens. Recurrence in about 30% of us, and you had a very rough time of it. Not only is it moronic and uninformed, it puts the patient at a lot of risk. Several of us had this, and aside from writing them a letter back, turn the cheek, so to speak and send them the real literature. Let them go ahead and call the NEJM crazy. I wonder what that would do for their careers, these ones who knw better. Is there not some complaints authority in the US you can tell of this? And it is tough, all we need doctors in same city where we live, and it is dismal when they behave like gangs. Can your Boston docs not speak quietly to them? So that you get diginified and proper treatment.

Marcia
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Postby Marcia » Fri Feb 03, 2006 9:18 pm

That is where suing the b......d would be so sweeeetttttttttt.

Christina
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Postby Christina » Fri Feb 03, 2006 9:51 pm

I have just finished filing a complaint on-line with our state medical board.the problem is he didn't like me going for a second opinion so he lashed out.Unfortunately, it has now put my healthcare here even at more jeapordy.Somehow everything will turn out fine.How and when I don't know.I will continue to go to Boston when needed and someday everything will work out.At least I have a good Dr. there.

Rose2
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Postby Rose2 » Fri Feb 03, 2006 10:21 pm

Perhaps you can speak to someone in the billing dept about the bill given the whole history. You might also want to speak with the Medical Director of the ER.

Rose

angelmom
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Postby angelmom » Sat Feb 04, 2006 2:44 pm

I would persue the complaint and it is my belief that a positive test should vindicate you.
I have been down this road with doctors and have ended up in the hospital due to medical ignorance and neglect. I remember having one punk doctor tell me it was hormones and I was just getting "too old" for my job! Three months later I was diagnosed with a rare disease. I never went back, but sent him a copy of the diagnoses and wrote " too old and hormones huh" on it!. Doctors get this God complex and cannot accept when they are wrong. I was a medical caseworker and in one case, when a child was finally correctly diagnosed with a condition, the doctor who misdiagnosed her failed to acknowledge his error and, then refused to treat the child. Time and time I see things like this.
Have you spoken to your Boston doctor or shown him the letter? I was going to suggest you go to the state board, but you already have. I personally feel that his actions are unethical. Maybe there would have been a psychological issue had you not had positive cultures and symptoms, but to neglect clear evidence! What a jerk!
Linda

diane
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Postby diane » Sat Feb 04, 2006 4:26 pm

I would be contacting an attorney!@!!!

jennie
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Postby jennie » Sat Feb 04, 2006 4:31 pm

Christina, point of clarity here: this PCP put it in writing that EVEN if you tested positive, the other doctors were to not treat you? Lucky you finding that letter! If it was me, I'd nail him. Not ok to not treat, not ok to not treat c-diff. And if that was his (idiotic) opinion, how dare he write all your other doctors with this?? I recall the time you were posting about the yeast, and it did seem strange that your doctors in Ohio were not responding, not dealing with it. Now we know why! And why you feel you have to go to Boston when you don't feel well. Your hometown doctors are not dealing, not taking good care, that's how it reads from out here.

And now you are taking heat for complaining? Christina, you live in a city which is one of the epicenters of c-diff. There have to be better doctors, who at least, are reading what is going on with c-diff (such as, hospital cases have to be reported to the state authority, Ohio the first state to require this.) Do you know if you have the virulent strain? Did they ever figure that out? I also want to say to you, count your blessings. You consult with the best experts on this, and I agree, what do you need this kind of attitude for. But it is awful not having a caring doctor nearby, and it seems that is something worth working on, to get right. And I think many of us have figured this: tell the doctor the symptoms, the pain, what is going on physically. They get confused when you say I feel stressed, I feel worried. It sort of gives them an excuse to not focus on what the bug is doing, and how to treat it. We all feel stressed, it worries us all. Good doctors are in general able to separate that from the illness, not mix them up. But up to us individually to enable them to hear what the bug is doing. For yourself, figure, this is my fear about it, this is my panic about it, my family, my kids... and this is the illness..and communicate that clearly. Am saying this because many of us have had bad care because the doctors are ignorant, and because they pick up the panic signals, and it makes them tune out, to the illness. Bobbie has posted a few times about going to a new doctor prepared, calm, with all the records in place, not wasting valuable time with the bits and pieces, with your symptoms and questions in a note (for yourself). And lastly to say, it sounds you are doing great, down to Vanco every 3rd day, I think you posted. It says you are doing something right, are getting this figured! Other times, time to move on from bad doctors, don't waste energy on them. There are some really good guys out there, that's what's to find and focus on!

Bobbie
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Postby Bobbie » Sat Feb 04, 2006 6:14 pm

Christina,
Your story is not an ususual one. It's called, "Beat up the victim." It happens in both the legal and the medical fields. It's another version of "I can't fix you so what is wrong with you?"

Once when I was relapsing (had been off Vanco. for awhile), I got so sick one evening I called the GI on call at one of the first practices I went to for a consult. When I explained the circumstances, the jerk said, "Well, if you have recurrent C. diff., I can't help you" and hung up on me. May he someday have C. diff.!

Ask Dr. Kelley to recommend someone he can comnunicate with to coordinate your care.
Last edited by Bobbie on Tue Feb 07, 2006 12:27 pm, edited 1 time in total.

angelmom
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Postby angelmom » Tue Feb 07, 2006 10:59 am

Oh boy is Bobbie right! I have gotten that! I had a doctor refuse to call me back when I called about the staph infection. Doctors can be complete a**es when it comes right down to it. And then they "label" you when they don't do their job! I just got a bill from 1994 from a doctor that I gave the heave-ho for practically killing me for non diagnosis and treatment of the staph infection that landed me in the hospital and ended up with c diff. What a crock! I'd been paying each co-pay every time I was there, but somehow they dug up something and now he won't fill out papers for my life insurance disability clause- which could cost me a year of premiums if he fails to fill it out.
Linda

diannestevens
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Postby diannestevens » Tue Mar 07, 2006 11:27 pm

I am a former medical biller and I have worked very closley with doctors. Sounds like your old doctor has the God complex. You are going to test negative for c-diff if you are on antibiotics. You need to be off of them for at least two weeks before you test again. And you could be having false negative test results. I only test positive before I feel like I am dying. For this doctor to state in a letter that you are crazy and mail it out to all your doctors is unethical. Does he have a medical degree or a phsyc degree? And he should have never stated not to treat you even if you test positive. Right there is your proof to nail him to the wall in a court of law. You also did the right thing in reporting him to the state medical board.
Dianne Stevens


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