posted
Have a question about PICC lines. I have been reviewing hundreds of pages of hubby's medical records from his final hospital stay for my lawyer.
His blood cultures were negative during his entire month in the ICU. I know hospitals think blood cultures are a really great diagnostic tool -- but I personally have very little confidence in negative cultures.
PICC line was pulled 9 days into hospitalization and replaced with central line.
Two blood cultures from day of admission negative. WBC normal at that time.
9 days after admission and after 6 days on massive doses of steroids and 2 days after bronchoscopy and intubation cultures from peripheral blood negative. Same day cultures from PICC line tip positive for staph epi and strep non-hemolytic.
Patient given 10 day course of antibiotics for PICC infection.
Three more sets of cultures -- 2 sets prior to stopping antibiotics above and one set day before death -- all totally negative including for bacteria found in PICC line.
Is this the norm or unusual -- if bacteria are cultured from the tip of a PICC line how frequently are the blood cultures negative?
Day after admission and after steroids started bandemia began and WBC became elevated. Prior to stopping steroids WBC went to a high of 29.7 and bands at 27 percent. Fevers up to 103 or so appeared after steroids stopped. Obviously there was an infectious process going on.
Fevers began before bronchoscopy and elevation in WBC and bands as noted was also prior to bronchoscopy. No lung cultures done up to that date -- patient could not produce sputum but later pneumonia determined to be aspiration pneumonia. Was assumed that patient aspirated during bronchoscopy.
From my research on babesia even in acute cases with fever I can not find any references to elevated WBC. There were at least 2 episodes of hemolysis during the 9 day time frame.
It looks to me like there was probably a PICC infection that for whatever reason did not show up in the blood cultures.
What do you think?
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I looked back on my bloodwork schedules and despite 14 prior ER visits on 12 days (2 visits on the same day twice) prior to his final ER visit for the lung failure he had not had an elevated WBC in 8.5 months -- that is as far back as I looked. Bloodwork was done weekly during the entire time.
The PICC line had been in place about 3 months. He had been without a PICC for about 6 months or so prior to that line.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
you are right to suspect infection... but what type of infection and where?
Steroid use signficantly reduces the bodies ability to fight infection and it is a mistake to think that antibiotics on their own do all the work of fighing infection either. A functioning immune system is REQUIRED for full success.
Also, remember, antibiotics can push a microbe into mutation, so a test may not find it... and of cours conventional doctors dont believe in polymorphism, even int he face of MRSA! idiots..
Im sorry for your loss and I understand your need to try to figure the puzzle out but you may never know what happened for sure. Invasive lines are a high risk endeavor and they should be avoided like the plague. Ive seen many die from the complications they cause, complications mind you, perhaps not directly related to the pic. But in your case contamination caused an infection which further weakend your husband, he was given antibiotics which further weaken him, he was probably on a lousy diet and receiving no meaningful supplements to boot.
I am working on a book right now dealing with infections, how to treat alternatively, and the repressed knowledge of microbes and the resultant MRSA and other plagues we are now dealing with... my revenge for the years of working as a nurse in environment filled with lies, ignorance, distruction and death that I participated in due to my own ignorance. Never more sayeth the Raven, Nevermore.
[ 10-20-2013, 10:53 PM: Message edited by: Carmen ]
Posts: 803 | From USA | Registered: Oct 2013
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No need to reinvent the wheel as the saying goes. The 2nd edition of the Buhner book Herbal Antibiotics probably covers alternative treatment of infections just about as thoroughly as any book could.
But that book does not cover other ACAM treatments such as IV vitamin C, blood ozone etc. But there are other books that do cover those treatments.
If you are seriously considering putting the time and effort into writing a book you need to research what is already out there as there may not be much of a market for another similar book from an unpublished author.
Yes, I may never have all the answers about hubby. But I feel a moral obligation to seek justice for any mistakes made by the hospital. And obviously the number one issue is the refusal to treat his babesia or other blood borne protozoan infection. The other issues are secondary, but show a pattern of putting protocol and prejudices before patients.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Its not a matter or reinventing the wheel, its a matter of addressing different types of audiances. My concern is addressing my local communty.
They will not read someone elses book on this topic but they will read mine because thats how this community works.
I find it interesting that you are discouraging. What Im hoping is that my book will help people understand how to approach disease and keep people out of the hospital entirely, people like your husband and so many many more.
There are millions of people out there who would never in a million years pick up Buhner's book.
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Carol in PA
Frequent Contributor (5K+ posts)
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Carmen said, "...he was probably on a lousy diet and receiving no meaningful supplements to boot."
Bea is so knowledgeable about treatment for tickborne diseases that I don't think this was the problem.
However, you are right about people who would never even try to read Buhner's book. Many people just do not like to read, and manage to get through life without it.
I remember one person here, who bought Buhner's book, and realized that she couldn't understand anything. She gave the book away.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
I assumed a lousy diet because thats what you get when you are in ICU unless you are fighting tooth and nail to get it.
Supplements cannot replace a wholesome diet, especially during an onslaught of drugs.
and even if you are served a good diet in ICU many ICU patients can't eat it anyway for a multitude of reasons.
Posts: 803 | From USA | Registered: Oct 2013
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Not trying to be discouraging -- just realistic. Writing a book is a major undertaking.
As far as diet goes -- 3 of the 4 weeks hubby was in the ICU he was on a ventilator so while not optimal of course that issue was pretty much out of our control. I did insist that they change the formula so he would get additional fat the one week he was on mepron.
As far as keeping hubby out of the hospital -- when a person is in lung failure that is where they belong if they want to keep fighting for their life. Three days of shortness of breath and he ended up in the ER. That is how fast these illnesses can act when things go wrong.
Hubby had been sick for 12 years but never that acutely ill before. And then to further complicate matters he had had 2 recent tickbites and after the 2nd new bite is when things really went downhill.
Yes, there are dangers to PICC lines. But sometimes you have to take calculated risks in life. And tickborne illnesses can be very serious life threatening infections.
The hospital physicians were so busy trying to tell hubby his seizure like spells were a conversion disorder and that I had munchausens or poisoned him with herbs and nutritional supplements that in my opinion they ignored obvious signs and symptoms of not only babesia but other infections that they actually should have been experienced in treating.
Razzle
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Member # 30398
posted
Cultures will miss what the culture is not designed to detect.
It is highly likely the fevers and elevated WBC's were from an infection the cultures missed (for whatever reason).
PICC lines may have biofilm communities attached to them, also, and this may be another reason the cultures were negative, but the PICC tip showed infection.
Just my $.02. I'm not a nurse, but have had several PICC lines and done lots of reading.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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But that still does not answer my basic question. If a PICC line tip culture shows bacteria does that mean the patient is infected with that bacteria even if blood cultures do not detect the same bacteria?
In 2011 we had the opposite problem. Hubby was hospitalized 5 times for fevers over 102. Two times cultures found nothing and once -- the first time when the fever was the highest (105.8 rectal) the WBC was normal.
But two times when the culture found serratia marscescens in the blood stream it was not found in the PICC line.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
You can be sure that they would be checking for staph if they were doing a culture in a hospital. Its a main concern for them across the board.
this is how I see it.
It means that the catheter was contaminated. It does not mean that the infection had colonized in the blood.
It does mean that there was a potential for infection of the blood.
Conventional medicine holds only one card for determining infection in the blood and that is blood culture. Cultures have never been 100% reliable.
If it came back negative then in their estimation no infection was present. There is the possibility that in a week or two or there though, that an infection could grow enough to make a culture positive.
Somewhere there is that fine line when a pathogen is present but not present enough for a culture to respond. this would be in the early stage of contamination
for instance, and this is just a theoritical example... if you have 1 ml of blood and the infection has just been introduced to the body, say that day, there may be only 5 microbes in one ml of blood.
Two weeks later, if left unrecognized and untreated that one mil. of blood might have 10,000 microbes. Do you see what Im saying?
If the blood culture sample is taken when only 5 microbes are present it may not grow out in a sample.
Of course infections get missed because there is not enough pathogen to grow out a culture at the time the blood is drawn.
If the infection is there and if the body cannot mount an immune response eventually there will be symptoms (enough microbes) to instigate another blood culture test.
My best guess is that if the catheter was contamininated it would only be a matter of time before it would show in blood unless he was on some type of antibiotic that was activing killing as fast as the contaminated site was releasing microbes into the blood.
Catheters may develop biofilms, making them a foci of infection that can not be dealt with. The catheter needs to be changed then treament followed.
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desertwind
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posted
In 2005 I had my line pulled due to infection.
The way it was explained to me back then was; Blood taken from the side of my arm that did not have the picc did not show any bacteria growth in my blood.
When they cultured the blood taken directly from the line and the tip line itself it was positive for gram negative bacteria.
A few days leading up to the removal I would spike a 102-103 fever w/ rigors each time I would flush. This would pass by the time I got to the e.r. The last time it did not and they pulled the line.
Not sure this makes sense - bacteria in blood only on side where picc line was. My wbc was normal at the time of e.r. admission.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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I know it is a complex situation and there may not be clearcut answers.
It just seems to me like after they had lectured us on the dangers of long term antibiotics and PICC lines (orally and in writing in progress notes) that if they could not find the source of infection they should not have waited 9 days to pull the PICC line.
I guess it will be up to the lawyers to sort it all out.
I was very disappointed to find out today that my contact with Columbia Presbyterian University in New York with the tickborne diseases research group is in Europe and won't be back until the end of November. I still have no idea if they have written a report or done any actual testing on Steve's brain and other organs that were donated to them. And I can't get specimens to other researchers until the Columbia guy gets back.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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sammy
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Bea your PM box is full
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Sammy -- Tried to clean up my mailbox a little. If a message will not go thru send me an email to the address below.
seibertbb (at) yahoo (dot) com
Had a long phone conversation -- probably at least 45 minutes with hubby's former LLMD this afternoon. The LLMD thinks it is even possible that due to the high dose steroids that hubby's line was never really infected. That the fevers and elevated WBC could have all been from the babesia or whatever exact blood borne parasite Steve was infected with.
LLMD said that staph epi could have been a lab contaminant since that is such a common bacteria. Agreed that line should have been pulled sooner and confirmed what I already knew -- if LLMD had been consulted they would have advised against steroids. And they would definitely have advised that the dose should have been tapered which was not done.
In an emergency situation we just did not know what to do about the steroids as I had never researched lung issues. Hubby and I both honestly thought that when the steroids did not help (we never expected them to and they obviously did harm rather than help) and when the bronchoscopy did not find anything (did not provide any new info which was what we expected) that the docs would agree to treat his babs.
Anyway -- the paperwork will all go to the lawyer soon -- hopefully by the end of the week.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
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posted
Bea,
I am sure that you are completely on this, but can Steve's LLMD help with the case in terms of what he thinks may have been at issue, or any opinion, etc.? I realize that he was not allowed to weigh in at all when Steve was in the hospital, which is just plain criminal in and of itself.
And if there is any other medical person who can testify, not to Steve's situation from being involved, but from what is most likely in such a case, or what should have been done, etc., you need that.
Of course, I'm sure that you have gone over all of this, and so has your lawyer.
I hope that you have the best lawyer possible for this sort of case.
The whole situation is and was so galling and disturbing. Preaching to the choir to say the least! It's also so disturbing about what might happen to any of us, should we land in the hospital in dire straights.
Most of us have already experienced how bad it can be just in the ER. It's a very, very rare doctor who can be respectful, let alone knowledgeable or open about TBD's, other than LLMD's.
I just went to my ENT yesterday, and he is a very, very rare exception, as he understands TBD's very well, although he's not an LLMD, of course. I dread his eventual retirement, although they said "no time soon." (Didn't mean to veer off the subject here).
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Hubby's LLMD is willing to help in any way they can. It is my understanding that if the case goes to trial it would require expert witnesses -- I am assuming from both sides. And I am requesting that the lawyer let me approve of any docs they want to call as expert witnesses for my side.
Anyway, I have been reading the progress notes again and after discussions with his LLMD I think there is a very high probability that even if he did get pneumonia from the bronchoscopy there was a lot more going on that the docs missed infection wise. The timeline and test results just do not fit the scenario the hospital docs painted.
As I mentioned, my contact at Columbia Presbyterian is out of the country until the end of November. Hopefully they can fill in some of the gaps.
The big question that is unanswered is whether or not hubby had endocarditis. The autopsy findings said grossly suspicious for vegetations of the aorta. But of course the hospital did no post mortem testing. But Columbia got the aorta as well as the brain. I don't know if they have done any testing yet or not.
The 2 Clongen bloodsmears done while hubby was in the hospital (the first one before any antibiotics) both found coccobacilli on wet mount exams. But then the hospital cultures never grew out any bacteria from the bloodstream. And we all know how difficult it is to grow out bartonella. The hospital never tested for bartonella although I did request it.
If hubby did have endocarditis then the antibiotics he got for the PICC line infection and the pneumonia may have helped a little with that problem, but of course did not solve it since it is unclear exactly what bacteria may have been involved.
Steve had a heart murmur that he had known about since age 3. That is a known risk factor for endocarditis. He had lots of heart issues while in the ICU. But I don't know enough medically about lung failure and ARDS to say how much that was causing the cardiac issues or if something else really was going on with his heart.
He had episodes of a-fib, even had heart block at one point, tachycardia, wild swings in blood pressure etc etc. But some of that was from the septic shock and what I believe was an adrenal crisis from not tapering his steroid doses.
For now I am trying to summarize the thousands of pages of medical records for the lawyer and then they will consult whatever experts they feel are needed to prepare a case.
It is very obvious the hospital did not know how to test for babesia and that of course is a key issue. But a winning case will require explaining and understanding some of the other medical issues as well. And showing a pattern of either ignorance or ignoring their own test results or not ordering tests that should have been ordered etc etc
Personally I feel that markers of infection were ignored (backed up by their own notes) and that they did not monitor coagulation issues adequately. And they supposedly were going to order additional cultures and blood smears for fevers over 101 which was not done.
There are multiple issues involved because as we all know these tickborne illnesses do not just affect one system in the body.
And the splenic infarction is one major issue that can't be ignored. As far as I can determine none of the pathogens supposedly in the PICC line or that caused his pneumonia generally cause that. And we know that the spleen was normal in size half way thru his hospitalization. Haven't found any other logical explanation for the splenic infarction except for babesia or a similar blood borne protozoa.
I haven't seen the nurses notes yet. Went ahead and ordered those and they should be here within a week. And I think at that point I will have his complete medical file.
Maybe I don't need to do all the write-ups for the lawyer, but I have the time and think I can at least point them in the right direction to do further digging.
Thanks to everyone here for your help and encouragement. It is not an easy thing to do, but I feel it is a necessary one. And hopefully in a few years when this is all resolved it can help other tickborne patients in the future.
Bea Seibert
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