This is topic Bea Seibert - Update in forum Medical Questions at LymeNet Flash.


To visit this topic, use this URL:
https://flash.lymenet.org/ubb/ultimatebb.php/topic/1/130602

Posted by seibertneurolyme (Member # 6416) on :
 
Sorry I have not been online for about a month.

Lots going on personally and in regards to Steve.

Just moved to a new apartment - need to go back to the old apartment for one more day to finish up.

I did attend the ILADS conference (2nd day only) and also the tickborne conference in Boston. Will provide more details soon.

Most importantly - today is my first day in court regarding Steve's medical malpractice case for failure to diagnose babesia.

Still do not officially have a lawyer so I plan to request an extension on time to file some of the additional items requested by the court. Today is mostly just administrative details - proving I have the required certificate of merit from an expert witness etc.

Prayers requested.

More later.

Bea Seibert
 
Posted by Carol in PA (Member # 5338) on :
 
Good luck Bea, my thoughts and prayers are with you.

Carol
 
Posted by jlcd1 (Member # 18138) on :
 
Good luck with everything!! My prayers are also with you.
 
Posted by Lymetoo (Member # 743) on :
 
Good to hear from you! Good luck!
 
Posted by randibear (Member # 11290) on :
 
praying you get resolution.
 
Posted by linky123 (Member # 19974) on :
 
Prayers sent [group hug]
 
Posted by lymeinhell (Member # 4622) on :
 
Good luck to you Bea!! Go get em!!
 
Posted by Keebler (Member # 12673) on :
 
-
Absolutly, Bea . . . the best of wishes to you for all matters during this pivotal time in your life.
-
 
Posted by seibertneurolyme (Member # 6416) on :
 
Hello everyone,

A quick 20 minute court appearance that gave me a 21 day extension to file additional info.

Next step is to find a lawyer - still in discussions with the one I really want.

One issue was tabled or deferred if I understood correctly - that was what I was a little worried about arguing myself. Prayer in action in my opinion.

Anyway - the case is still active and after tomorrow I will be back to making follow-up phone calls etc. Had discussions with several more tickborne researchers at the Boston conference and need to send them some packets of info.

Heading to a late lunch before going home to my new apartment. Have not got my new futon assembled yet so I am still sleeping on a roll away cot.

Lots to do in the next 3 weeks.

Bea Seibert
 
Posted by surprise (Member # 34987) on :
 
Thinking of you Bea with good thoughts and prayer--- thanks for the update---
 
Posted by Dekrator48 (Member # 18239) on :
 
Prayers for all to go well, Bea, as well as strength, a great lawyer and financial blessings.

[group hug]
 
Posted by GretaM (Member # 40917) on :
 
Praying for you Bea!
[group hug]
 
Posted by seibertneurolyme (Member # 6416) on :
 
This whole legal thing just keeps getting stranger.

While sitting on the bench waiting for the hearing yesterday I had one of those flashes of insight you sometimes get. I had not read any of Steve's medical records in over a month. I reread the consultation notes from the first infectious disease doc Steve saw. Somehow I had forgotten that that doc was the first one to mention Munchaussens. From that point of course then just about every other doc mentioned that as well.

And then the doc went on to say that they would test for lyme and babesia to make sure that it was on record that Steve tested negative for those diseases. This all followed several negative comments in regards to LLMD's.

Those statements together with the comments in the history and physical set the course for everything that happened from that point on.

Called the lawyer for the hospital today to give them my new address and find out how to get transcripts of the hearing.

And this is where it gets rather weird. I asked who the lady in the audience was if they were willing to tell me. All the lawyer would admit was that it was someone from the hospital. The person looked familiar but I am not absolutely sure it is who I thought it was - but am assuming it was someone pretty important in the hospital administration.

And now for the really amazing info if true. I asked the lawyer if they were who I should contact to see about getting a pathologist to examine Steve's autopsy specimens. The lawyer claimed they didn't even know that an autopsy had been done on hubby and that they had not seen that report.

I met the well known lyme researcher/pathologist A.M. at the Boston conference. He gave me a list and instructions on what he needs to test both Steve's brain at Columbia Presbyterian and any autopsy specimens from the hospital. The cost of the testing will be covered by his charitable foundation.

It just boggles my mind if the lawyer really was unaware of the autopsy.

My to do list seems to growing rather than shrinking. LOL

Bea Seibert
 
Posted by Keebler (Member # 12673) on :
 
-
Oh, my. What a journey, Bea. No words. Hugs.
-
 
Posted by SickSci (Member # 43849) on :
 
Hugs indeed.

Have you tried lawyers associated with those listed in this article?:
http://www.baltimoremagazine.net/2014/9/lawyer-advocates-for-lyme-disease-reform
 
Posted by randibear (Member # 11290) on :
 
some things never cease to amaze me
 
Posted by lymielauren28 (Member # 13742) on :
 
Prayers Bea. Thanks for updating us.
 
Posted by Keebler (Member # 12673) on :
 
-
Once they bring their very wrong idea of "Munchaussens" into this, I'm afraid that can be a very tough battle to face.

I wish you could someone talk to Pamela Weintraub about this as she has writing about that topic in regards to parents (of kids with lyme) wrongfully accused of Munchaussens by Proxy.

You are caught having to prove it not true while they seem to not have to prove that it is - and their absence of diligence can be then used against you when they say they can't find proof of babesia, etc - discounting they did wrong tests or screwed up in other ways, etc.
-
 
Posted by randibear (Member # 11290) on :
 
had a doctor say I was suicidal. lost my insurance over it. apparently I had a physical and he said I had imaginary illnesses, depression, and all. he sent it in and wham...insurance cancelled. never got it back.

the power they have is profound. I never mention lyme now at all. ever...
 
Posted by seibertneurolyme (Member # 6416) on :
 
Keebler,

Actually I am not worried about the Munchausens issue. I actually think it is helpful to my case. The docs did not do any psych evaluations on either hubby or me. They just put that in the records initially because we believed Steve had chronic lyme.

The expert witness I have has already covered that in the questions I asked him - I have a very good medical description of that syndrome from that doc and obviously it does not fit.

In my opinion it simply shows that the I.D. doc had already made up his mind that not only did Steve not have a tickborne illness upon admission to the hospital, but he had never ever had any tickborne illnesses. A different I.D. doc told me that verbally - my response was "Then explain hubby's abnormal brain SPECT scans." Which of course the doc could not do.

In my opinion the statements made by the docs had a great bearing on the treatment Steve received. I probably sounded like a broken record discussing babesia, but their eyes and ears were closed. The phrase I ran across recently is confirmation bias. It definitely fits in this situation.

It is this attitude that has to change for tickborne patients to be taken seriously.

I am sure the lawyers will eventually get around to arguing over the exact wording of some of the different doctor's notes and there is a lot in there that is opinion and not facts.

Got to go for now.

Bea Seibert
 
Posted by ukcarry (Member # 18147) on :
 
You are truly indomitable, Bea. Good luck and don't forget to take care of yourself.
 
Posted by Lymetoo (Member # 743) on :
 
That is crazy stuff.. Keep on keepin' on.
 
Posted by LymeCFIDSMCS (Member # 13573) on :
 
Absolutely rooting for you. As you know, I had ARDS from babesia duncani too and barely scraped by with my life (barely, still fighting), and this information and awareness has to get out there.

You continue to honor Steve's struggle and the fight he fought, and I hope you get to justice.
 
Posted by momindeep (Member # 7618) on :
 
Same thing happened to me! The very first doctor my, at-the-time, 13 year old daughter saw, put in her records that me, her mother, was agitated and that I insisted it was lyme even tho the doctor stated that there was no evidence of lyme in his "professional" opinion.

That very first critique of my daughter's situation, set the entire stage for the following several years...the sediment was repeated in different ways from that moment on, by almost every doctor that she saw...me the crazy mother and my daughter the mental patient.

As time went on...opinion was getting close to Munchaussens...I saw it coming.

I could kick all of those doctor's asses (forgive me) for their dismissive, know it all, assinine attitudes because I believe that first comment, made by that first doctor, caused my daughter years of suffering.

I feel for you Bea...bless your heart.
 
Posted by Rumigirl (Member # 15091) on :
 
Keep on keeping on!!! We are behind you all the way----along with the TBD patients of the world!

This crazy, dismissive, negligent situation that pretty much all of us have gone through, most of us for years or decades, MUST stop.

Money talks . . . a lawsuit, hits them where they feel it the most.

Love and prayers to you.
 
Posted by Jane2904 (Member # 15917) on :
 
Best of luck to you, Bea!!
 
Posted by seibertneurolyme (Member # 6416) on :
 
Thanks for all the words of encouragement.

Back to the phones today.

Spoke to the spouse of hubby's former LLMD who is a lawyer. Got some advice on how to find a lawyer. The person was impressed with the complaint I filed.

The person was actually not surprised that the hospital lawyer did not know about the autopsy. Their opinion was that the hospital just handed off the case and basically said "Make this go away." The lawyer I spoke with thinks the hospital will not take me seriously unless I find a lawyer and that they will try to trip me up with legal technicalities to get the case dismissed.

My next deadline is 12/23. Goal is to find a lawyer by then. I can probably handle what is needed by that deadline on my own if I have to, but keeping my fingers crossed that I can find a lawyer to help.

Bea Seibert
 
Posted by ukcarry (Member # 18147) on :
 
Best of luck, Bea.
 
Posted by seibertneurolyme (Member # 6416) on :
 
A stressful but productive day. Some of the lawyers I left messages for today actually called me back and I have sent further info to at least 3 possibles.

Plus, I have been given an alternative legal strategy to get more time if nothing works out this week.

Did not make as many calls as I had planned, but repeating Steve's story over and over was not as hard emotionally as I had expected it to be. It wasn't easy, but could have been much worse.

One day at a time.

12/23 is the next hurdle.

Please keep me in your thoughts and prayers.

Bea Seibert
 
Posted by DKat (Member # 30941) on :
 
Praying for you. May the Lord open the right doors, strengthen and surround you. And Bea, thank you for your courage and caring heart.
 
Posted by Dekrator48 (Member # 18239) on :
 
Praying for you, Bea, in agreement with DKat!!

[group hug]
 
Posted by seibertneurolyme (Member # 6416) on :
 
A very productive day.

Bought my brother the computer he commissioned me to shop for for him, bought some new Sunday clothes (lost 10 pounds without even trying during my big move), and more importantly went to the courthouse and filed a nonsuit for my wrongful death lawsuit.

What this means is that I withdrew the case and now have 6 months to get all my ducks in a row and refile. Pretty sure I have a lawyer, but the meeting is not until the week of January 5, 2015. Lawyer has reviewed various files I emailed and was impressed with the complaint I wrote.

A couple of different lawyers suggested this legal strategy (the nonsuit) and I think it is best at this time. Now I can follow-up with all the docs I met at the 2 recent lyme conferences and get more expert witnesses on board.

Happy Holidays everyone.

Bea Seibert
 
Posted by Lymetoo (Member # 743) on :
 
Sounds GREAT!!!
 
Posted by Judie (Member # 38323) on :
 
Woohoo!!!! Keep going Bea!!!!
 
Posted by Dekrator48 (Member # 18239) on :
 
Good job, Bea!

Wishing you a peaceful Christmas.

[group hug]
 
Posted by Eight Legs Bad (Member # 13680) on :
 
Here's hoping you are able to get some time to relax over Christmas, and wishing you much strength in your coming battle in 2015.

Elena
 
Posted by seibertneurolyme (Member # 6416) on :
 
Thanks Elena and everyone else.

Planning to spend at least a week with family in West Virginia. My parents have no TV, no cell phone reception and no internet connection. Plus the nearest neighbors are a mile away. So it is very easy to just commune with nature on the family farm.

The forecast keeps changing so not sure if they might be snowed in or not. As long as I have something to read and some yarn for knitting or crocheting I can keep myself entertained and get recharged for the year ahead.

Bea Seibert
 
Posted by Lymetoo (Member # 743) on :
 
Sounds wonderful!
 


Powered by UBB.classic™ 6.7.3