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» LymeNet Flash » Questions and Discussion » Medical Questions » Failure to Diagnose Babesia - MUST READ UPDATE

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Author Topic: Failure to Diagnose Babesia - MUST READ UPDATE
seibertneurolyme
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Talked to the company verbally regarding the 8 expert witness opinions. Not surprisingly most say I do not have a valid case. Some of the reports have been a little slow coming in.

I should be getting an email with the actual reports today (Saturday) and will be madly scrambling to find a lawyer next week so I can file the case.

As far as I am concerned as long as I have one or more experts on my side I am willing to move forward. These are standard AMA docs. The next step of course is finding lyme literate docs to add to the number of experts.

As they say in the opera - It's not over til the fat lady sings.

Bea Seibert

[ 10-06-2014, 11:07 AM: Message edited by: seibertneurolyme ]

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steve1906
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-
I agree, all it takes is one expert on your side.

Haveing a LLMD on your side would be great, keep plugging...


It's Not Over 'Til the Fat Lady Sings

 -

Good LUCK,
Steve

--------------------
Everything I say is just my opinion!

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TerryK
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Bea,
You have probably already thought of this but have you contacted anyone via the ILADS website with your/our plight?
http://ilads.org/ilads_media/contact/

Perhaps someone will step up and testify??

You are doing a great job as usual!!

Terry

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Lymetoo
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Finding an LLMD to testify may be the biggest challenge.

Hope it all works out, Bea!

--------------------
--Lymetutu--
Opinions, not medical advice!

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seibertneurolyme
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I got 4 of the reports yesterday and they did not support my case. Probably will not get the other 4 reports before Monday. Supposedly there is one positive one I have not seen.

The 4 I received show just how little attention they paid to any documents I submitted that did not come from the hospital.

And the other mind boggling thing - they still agree that the low dose Cortef caused immunosuppression (no tests to support this), yet there are supposedly no standardized doses of steroids and whatever dose they gave him was appropriate. The doses were massive - equivalent to 3000 mg hydrocortisone or 750 mg prednisone daily - the 5 mg daily dose of Cortef (hydrocortisone) he was on was the equivalent of 1.25 mg of prednisone.

Cardiologist expert - No evidence of endocarditis. I did not really expect this one to be supportive, but did not know enough about EKG's to know for sure.
--------------------------------------------------

Infectious disease expert - No surprise here either, but of course they are not familiar with chronic babesia infections. Comments such as "his illness did not suggest babesia infection. He had already been treated for multiple times for a diagnosis of Babesiosis with no apparent benefit."

The multiple times daily seizure-like episodes and the Parkinsonian tremors and other movement disorder symptoms - both of over 10 year duration - which went away with aggressive babesia treatment and stayed away for 17 months is NOT no improvement.

And again in regards to endocarditis - "The postmortem microscopic findings on examination of the aortic valve which was suspected on gross inspection of having a possible vegetation showed no evidence of vegetation, thus definitively ruling out endocarditis."

Sounds good but not true - the hospital pathologist sent the aorta to Columbia Presbyterian and did no testing themselves. Unfortunately Columbia Presbyterian has yet to do any testing of the aorta and other specimens.

And the final bit of nonsense - "While it is possible that he suffered from an undiagnosed babesia-like blood borne protozoa infection I think that this is highly unlikely and if present was virtually impossible to diagnose or treat in 2012."

Steve had a total of 4 blood smears while alive - 2 by the hospital and 2 by Clongen. The second one by Clongen found the babesia like organisms. If the hospital had followed standard procedure per the IDSA, CDC, VDH (Virginia Department of Health), Quest, LabCorp or any of the numerous journal articles I could cite - they would have done 4 blood smears initially and if their pathologist had read the smears manually and had enough experience they could have found the babesia like organisims at the beginning instead of on the day Steve died.

And as for treatment - that is the other issue they failed to address - per the IDSA a red blood cell transfusion was appropriate for pulmonary involvement in babesiosis.
--------------------------------------------------
Pulmonologist expert - This one just made me mad and made me cry as well.

"Protozoa infections of the lungs are uncommon. Any of hundred other diseases are more likely." My response would be, "Why is it not significant that the only potential cause found for the lung failure despite numerous tests was the one positive Clongen blood smear?"

"Had his doctors consulted with the world's leading experts, they would have done the same things that they did for him in the hospital and the outcome would have been the same."

"Hopefully, you can have some peace of mind knowing that his pulmonary physician and the whole team of doctors did the best that anyone could to help Mr. Seibert."
-------------------------------------------------
Internal medicine/G.I. expert - Big, big disappointment here. Prior to examining the records this doc had said that a case for an undiagnosed babesia infection would make history.

This was one of the few docs that actually answered my questions.

I am still shaking my head over this one - his conclusion was that hubby was immune suppressed which allowed opportunistic organisms to overwhelm the patient and I should sue his LLMD for overprescribing meds.

My question again, "Where is the proof?" - all blood cultures negative. The hospital was the one who prescribed the massive steroid doses which allowed the hospital acquired pneumonia to go into septic shock and they were the ones who waited 9 days to remove the PICC line.

-------------------------------------------------
The bottom line is that none of these 4 docs seriously considered tickborne diseases in the differential diagnosis in my opinion.

Bea Seibert

[ 10-05-2014, 09:55 PM: Message edited by: seibertneurolyme ]

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seibertneurolyme
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Steve - Loved the sign.

Terry - The truth is that I have been very disappointed over the lack of support from many different groups in the lyme community. I am not going to name anyone specifically. Other than hubby's LLMD I have gotten very little practical help or advice from any lyme physicians.

Bea Seibert

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Razzle
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Did they do cultures of the PICC line blood? If so, and if those cultures showed infection, the PICC should have been pulled immediately. This alone would be grounds for medical malpractice...

--------------------
-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.

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seibertneurolyme
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razzle - The blood cultures were negative. But when the PICC line was pulled the culture of the tip was supposedly positive.

Of course, they ignored the increasing band count that was present even before the bronchoscopy.

Personally I feel there was evidence of infection from the PICC line prior to the bronchoscopy that was ignored, but no one paid any attention to my bloodwork schedules. And of course due to the new medicare rules they were only doing bloodwork every other day for the first few days and the infectious disease doc did not make patient visits over the weekend.

Waiting for the hematologist report - that is my best bet at this point. If he actually looked at my charts that show the hemolysis maybe he will see the trends with the WBC and bands as well.

The docs all claimed the increased WBC was due to the steroids initially, even after their own lab added notes to the records that said steroids would not explain the numbers.

I just need to find a doc that actually reads the notes instead of just skimming.

Bea Seibert

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Razzle
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Bea,

I just sent you a PM...

--------------------
-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.

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TerryK
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Bea-
Thank you for the detailed info.

Their conclusions are illogical based on the information so on the surface it seems that they are

a) not paying attention (hard to believe that NONE of them are paying attention)

OR

b) sticking together so as to stay out of trouble.

There is also the standard of care. If they follow the standard of care laid out by the IDSA they can keep themselves out of trouble no matter how much the advice defies common sense and logic.

I would flat out ask ILADS if they will help and if not specifically why not. Is this a battle they think cannot be won or ??? Do they have any useful suggestions for you??

Most hospital employees (doctors and otherwise) stick together even if they know it is horribly wrong. I've seen it first hand a number of times.

I feel frustrated over this, I can only imagine how frustrated you feel. I know it's not much consolation but at the end of this, no matter what happens, you will know that you have done everything you could.

Take care dear one,
Terry

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seibertneurolyme
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Terry - Thanks for the kind words. In my opinion, they are simply uneducated. My whole point was that they did not adequately test for babesia according to the IDSA guidelines. Unless you consider the hemolysis there were few signs of babesia - fevers were initially suppressed by steroids. The more recent journal articles do talk about chronic babesia, but only LLMD's are aware of that fact.

I just think they read on every page that patient does not have babesia and they did not read my schedules or journal articles that explained that the testing they did to reach that conclusion was inadequate.

Yes, it is very frustrating.

Tomorrow will be a phone day and hopefully I can get some forward momentum going.

Bea Seibert

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rzh1
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Mrs Siebert,I am not trying to discourage you from filing the lawsuit,I guess I am just showing you what your going to be up against when you get inside that court room.

I think you need to be prepared for what is going to be coming at you.You are preaching to the choir over here,but when you get inside that court room it is not going to be a friendly place.

Earlier you said that the doctors should not pay any attention to the VSDH when they say they have found no evidence of Babesia M. or any speicies of Babesia in the state that has not been imported from somewhere else.They should be looking at his medical files instead.

The problem with that is your husbands medical file I assume is full of diagnoses made by LLMD's and LLNP's.

My wife has been in the mainstream medical business for over thirty years,and she told me that if a doctor came into a hospital where she has worked and stated that they were a LLMD,the hospital personal,Dr's and all would laugh him right out of the place.

Their not going to take anything in that medical file seriously.I agree with TerryK about going to the ILADS (and I would also go to Lymedisease.org)for help to legitimize the reputation of LLMD's to the jurors.

Like I said before,if I am the attorney of the Dr you are suing,I am going to show all the bad things some LLMD"s have done over the years and pound the fact that they are self promoted experts and not state board certified.

Also,you are putting a lot of emphasis on the Clongen and Fry test's.I think you need to get Dr Kilani and Dr Fry to come and testify for you and defend their findings.If I was a juror I would expect this and it would tell me a lot if they did not testify.

Again,I am not trying to discourage you,I am just trying to give you some examples of what your going to face inside that court room.

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seibertneurolyme
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Of course I would expect Clongen and Fry Lab to testify. But that is not what is needed to get a lawyer to file the case though. What I need is a doc in the same specialty of each doc I want to sue that agrees that the hospital doc was negligent - did not practice to the standard of care.

There would be no case if there were not two camps - LLMD's versus ILADS. Believe me when I say that hubby had to fight this battle for years with many many docs and hospitals.

The courtroom is the least of my concerns at this point.

When I say looking at my husband's medical file - I am talking about actually looking at and understanding prior test results - not diagnoses. A good example of one major issue is the question of immunosuppression which I have posted in another thread.

Bea Seibert

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rzh1
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Again I am going to act as if I was an attorney for the defendant.

Your husband tested positive for Babesia D.,this is what the VSDH has to say about babesia D:

Babesia duncani was first identified in northern California, and since its discovery there have been only a relatively small number of proven cases recorded in West Coast residents. Although a commercial laboratory developed a blood(antibody) test for B. duncani more than 10 years ago, and testing by this laboratory has yielded many positive WA1 tests in persons from across the U.S., no one has ever been able to isolate B. duncani from WA1 positive patients in places other than the West Coast.

When your husband came into the hospital,I am sure they saw what his symptoms where and treated him for what was the most likely cause of them.According to the VSDH,Babesia would be the least likely cause of his symptoms.

How is that negligence,and not practicing minimum care standards?It would seem to me that you would have a much better case if they pursued the Babesia diagnoses and the outcome was the same.

I think you would have attorneys pounding down your door to take your case.

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seibertneurolyme
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GOOD NEWS - The hematologist/internal medicine expert witness report is favorable. The expert agrees that hubby exhibited ongoing symptoms of babesiosis while in the hospital and that the hospital physicians did not adequately test him for that infection.

The company who is supplying the expert witnesses said they just referred another of their cases to a Virginia lawyer and will present my case to the same lawyer.

I really think this is going to happen.

So now I will request expert witness testimony from LLMD's and especially those docs who specialize in babesia.

I have been told by the lawyers on avvo.com that probably an internal medicine doc is qualified to say that the hospitalist and the general medicine docs did not meet the standard of care.

I think I am in shock.

Bea Seibert

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GretaM
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Yay! Many many prayers for this one doc who used logical thinking, symptoms and test results to come to this conclusion.

God bless this doc. Hopefully the lawyers will see this and go for it.

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poppy
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Hope this works out for you. Wondering if lyme docs are going to be accepted as expert witnesses in such a case. This is an infectious disease, and the defense may say they are not board certified in this field. Maybe there are other, non-aligned specialists who would be less likely to be shredded by the defense, and who would risk less in agreeing to be involved here.

The expert witness aspect has always been a problem for us for these reasons.

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Judie
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"GOOD NEWS - The hematologist/internal medicine expert witness report is favorable."

Bea, I'm tearing up! I'm so happy for you.

I'm so glad you didn't listen to the naysayers!

NEVER sell yourself short. You never know how far you can go unless you try!!!!

It really only takes 1 good doctor on your side to turn things around in a legal case (I'm speaking from experience).

Other doctors followed after that because they were more willing to listen to the opinion of a fellow doctor who was for me, instead of just me fighting on my own.

I went through a slew of doctors who wouldn't help or believe me awhile back. It only took that 1 expert doctor to change things when the attorneys said I might not have a case.

Good luck! [Smile]

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Razzle
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Hooray!!! [spinning smile]

--------------------
-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.

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seibertneurolyme
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Thanks for all the words of encouragement everyone.

Poppy - as I said before - I have to find an infectious disease doc, a pulmonologist, an internal medicine doc etc - hopefully ones that are lyme literate. It is based on specialty and LLMD is not a recognized specialty.

The pieces are slowly coming together.

rzh1 - The most encouraging thing in the Virginia Dept of Health letter that you seem to be overlooking is that Clongen identified a babesia like organism in a Virginia patient by blood smear. Further testing revealed it to be not B.microti or b duncani, but a different species that infects primarily deer. What the lab saw visually was confirmed by the PCR testing and that gives me a lot of confidence in the lab.

Bea Seibert

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rzh1
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I think the letter said that the Va patient sent in a tick to be identified not a blood smear:

"In 2012, I had a patient’s tick specimen obtained from Clongen to be re-tested by a different laboratory. Clongen had identified this tick specimen as being infected with Babesia by use of PCR, but they had only used a non-specific PCR primer, and this method could not identify the Babesia species.

When I subsequently had this specimen shipped to a laboratory with more specific testing capabilities, it turned out to contain Babesia odocoilei, a species that is carried by deer, and that is currently not known to cause human illness."

The letter also stated:

"More recently, the CDC has been working on developing a much more specific assay for B. duncani, and recently we obtained a sample from a Virginia citizen who tested B. duncani positive at a commercial lab and it did not confirm at the CDC"

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poppy
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I see. Well, many good wishes and hopes will be coming from all of us in your quest.

You are an inspiration, not only for the supportive role you had with your husband for years, but also in this legal case.

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Jane2904
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Good luck and best wishes it all works out for you.
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Dogsandcats
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Thank you Bea. You were and are Steve's best advocate.
You are also representing all of who are fighting or have fought Lyme and co, for that you have my heartfelt appreciation.

My prayers are with you.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Dekrator48
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Glad to hear your good news, Bea!

Praying for everything to work out in your favor.

[group hug]

--------------------
The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.

"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11

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Catgirl
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Bea, in a nut shell, you're awesome. :) So many of us are too sick to fight. I know your husband would be so proud of you. My guess is he's right by your side.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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Ellen101
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Glad to hear Bea!
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TerryK
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Yayyyy!!! Finally someone who is willing to step up.
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canadianmama
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Sometimes I so wish LN had a LIKE Button.

You go Bea!!!

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steve1906
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Like!!!

Steve

--------------------
Everything I say is just my opinion!

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WPinVA
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Rooting for you, Bea!
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Amanda
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Bea
You are so focased and organized, you probably though about this.

But I will toss it out there just in case.

You might have a better chance at finding doctors to testify if the doctors are near retirement (or have been retired less than 2 years). They do not have to worrry about losing their jobs or hospital privileges etc. My experience has also been older physicians could care less about what other MDs think of them. You can always find a date they graduated medical school.

This has added benefit of having a MD with lots of experience.

I still have a copy somewhere from Dr. Volkmans of Stony Brooke, scathing letter to the IDSA regarding lyme. (Dont know who a Babesea doctor would be). But I am pretty sure he felt comfortable writing it for public view because he was professor emeritus, ergo didn't have to worry about losing his career

just a thought...

--------------------
"few things are harder to put up with than the annoyance of a good example" - Mark Twain

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seibertneurolyme
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Amanda - I like your idea, but the courts in Virginia do not. An expert witness must have been practicing in the same specialty as the defendant within the last year - I do not know how that would apply if the case takes a year or two to go to trial and the witness retired during that time frame. So many loopholes. Seems like the best bet is to find a doc that is currently practicing.

See my new thread.

Bea Seibert

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Lymetoo
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Reply here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/130208

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--Lymetutu--
Opinions, not medical advice!

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