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» LymeNet Flash » Questions and Discussion » Medical Questions » Update on Failure to Diagnose Babesia Lawsuit

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Author Topic: Update on Failure to Diagnose Babesia Lawsuit
seibertneurolyme
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Any tickborne patient who has ever been to the ER or the hospital has probably had physicians who refused to believe in their diagnosis of lyme or babesia or bartonella. What happened to Steve is an extreme example, but it could happen to any tickborne patient.

Could you prove your current diagnosis with approved tests from IDSA recognized labs? If not, physicians can deny treatment of your tickborne illness and frequently that disbelief in your diagnosis results in less than optimal treatment for whatever brought you to the ER or hospital, even if it is totally unrelated to tickborne illnesses.

The fight I am is not just for me or for Steve - it is for everyone with a tickborne illness.


Prayers are also critical for the next few weeks until the lawsuit is actually filed. I will not give up until the statute runs out which is 2 years from the date of death or October 9, 2014.

Bea Seibert

[ 09-11-2014, 12:39 PM: Message edited by: sixgoofykids ]

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poppy
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I guess this means it is not a contingency case.
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seibertneurolyme
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Actually I don't have the answer to that question yet.

But if I understand the law correctly, in Virginia even with contingency cases the person suing has to put up the funds to cover the cost of the case and the law firm holds them in a special account.

If the firm I have approached doesn't take the case then I will not have much choice but to file it with someone on a fee basis due to the time constraints.

Bea Seibert

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lymielauren28
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Prayers for you Bea!!

--------------------
"The only way out is through"

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GretaM
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Yes. Someone in my support group got in a car accident a few years back.

Had severe leg pain.

Because of BC medical system, all medications history is disclosed upon ER visit.

Came out the person was being treated for lyme disease.

Was ignored in ER for seven + hours because of the "Lyme Stigma"

Finally got xrayed...had fractured leg.

Ignored, in agony, for seven + hours, after a car accident.

Tick borne illnesses kill people. Whether directly, or indirectly through neglect.

It's a crying shame at the state things have become.

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seibertneurolyme
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google - steve lawsuit babesia

Looks like I will have to take time off from looking for a lawyer to set up my babesia website.

Bea Seibert

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Judie
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Hi Bea,

Did you see the post in general support? The lady is an attorney. Maybe she can help or knows someone who can.

It looks like she does medical malpractice:

http://www.hardball-law.com/

Here's the link to the article:

Botched Lyme disease treatments turned Susan Green from angry patient to tireless advocate.

http://www.baltimoremagazine.net/2014/9/lawyer-advocates-for-lyme-disease-reform

Thread:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=034331;p=0

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seibertneurolyme
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I met that lawyer when I went to the Virginia Lyme Disease bill signing - she was one of the main authors of the bill.

Unfortunatley she is not licensed to practice law in Virignia - I have to have a Virginia attorney. Susan did offer to be co-counsel for my case - but most lawyers I have talked to want to hire their own co-counsel if needed.

Thanks for thinking of me. Still searching.

Bea Seibert

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poppy
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Maybe you already know this, but just in case:

http://www.vsb.org/site/publications/selecting-and-working-with-a-lawyer/

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seibertneurolyme
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Today is September 12 - the 2 year anniversary of when Steve entered the hospital where he died. It also would have been my 22nd wedding anniversary.

I met with the lawyer on Tuesday - they wanted 5 to 10 days to review the medical records. I just sent them a couple of journal article links and am waiting impatiently for them to make a decision.

Will continue to post updates to this thread.

Bea Seibert

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SickSci
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I can't stand litigation, but Failure to Diagnose suits are EXACTLY what we need. Thank you so much for pursuing this.

--------------------
-------------
- Working Dx: Protozoa x3, Bartonella
- Tx: Biaxin, Mycobutin, Ivermectin, boluoke, serapeptase, allimed, silver ACS 200 spray, Mg, Iodoral, fish oil, Vit's B, C, D, NAC, etc

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seibertneurolyme
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Discouraged. Got back hubby's records from the law firm today with a letter stating they are not willing to take the case.

Not to be cynical, but I think it is all about the money - they were the firm that wanted 40 percent of any settlement. The letter states "you do not have an economically viable medical malpractice action.....". The fact that hubby was 57 and had been on medical disability for 12 years would significantly affect the amount of lost wages they could sue for.

There is no question that hubby died from lung damage (ARDS). The hospital and even the autopsy found no cause for the ARDS. Babesia ia well documented as a possible cause of ARDS and Steve had a positive test for babesia from Clongen.

I think the other thing that scared them off if that multiple doctors were at fault. "Even if we could prove that many physicians who treated your husband failed to appropriately treat your husband............."

Back to the drawing board on Monday.

Bea Seibert

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dogmom2
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wow, that is discouraging. I really hope something works out for you on this, the docs and hospital are in the wrong, and they need to be held accountable. And even better, to make changes.

I know you're fighting hard for Steve, and I also feel you're fighting for all of us, so thank you.

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Eight Legs Bad
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Hello Bea,
Sorry to hear. I have been circulating your appeal and was about to put it on my website - do you want people to hold fire on this until you have found a law firm, or should we go ahead in the meantime anyway?

Best wishes,
Elena Cook

--------------------
Justice will be ours.

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seibertneurolyme
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eightlegsbad,

Maybe hold off for one week. I have one appointment tomorrow and am waiting on several call backs.

The reality is that I have only until 10/9/14 to find a law firm plus the law firm also has to find a doc willing to certify that there was malpractice BEFORE the case can be filed.

So many hoops to jump thru.

The closer the date gets the more likely I will be looking for a lawfirm who will charge by the hour rather than on a contingency basis.

Bea Seibert

[ 09-16-2014, 12:58 AM: Message edited by: seibertneurolyme ]

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Tincup
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You are my hero!

Please Bea, do not become discouraged. You are right, it is the fact the attorneys want an "easy case" that will produce quick results and lots of bucks. I couldn't tell you how many have tried, and not been able to bring a suit even in the worst of cases.

It does not mean what happened to Steve and so many others is acceptable, no- not at all, it is greed that gets in the way of justice. That is a double punch to the victims and survivors.

[group hug]

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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seibertneurolyme
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You know you are having a bad day when the lawyer suggests you need counseling to learn to deal with your loss.

Paraphrasing here, "The autopsy does not say that your husband died from babesia - it says he died from lung damage and a splenic infarction."

DUH - that is my point. The hospital and the autopsy neither one found a cause for the lung failure and ARDS except for the positive Babesia test that they don't believe.

Back to the phones tomorrow.

Bea Seibert

Thanks Tincup for the encouragement - down but not out yet.

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Judie
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Keep going Bea! That lawyer sounds like a moron and you wouldn't want him anyway.

I remember meeting one attorney and he spent 90% of the time talking about how he was going to the Bahamas for a vacation to spend time with his daughter.

I have NO idea what that had to do with my case. He was an idiot. Next....

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seibertneurolyme
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I posted the letter I wrote the attorney on my fundraising page.

To read it. Do a Google search - Steve Seibert babesia will lead you to the link

Bea Seibert

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LisaK
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this lawyer doesn't sound smart enough. you need a smarter one.

I hope you find someone. I often think of suing.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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seibertneurolyme
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It always pays to be polite.

The attorney actually wrote back and gave me a lead on another attorney - one that was already on my "to call" list.

One of his comments was "I cannot escape the conclusion that your husband's case is incredibly complicated". Also, "while I believe that you could benefit from counseling I did not suggest that you were delusional nor that your research wasn't persuasive".

I'll take that as an apology and move on.

Bea Seibert

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Haley
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HI Bea,

I am going to copy and paste an email that was sent to me. I don't know if this case is common knowledge in the Lyme community, but if not this may be a good contact to have.

Many blessings!

Victory!

CASE #09-CV-1039MCA GLIBOWSKI VS. U.S. OFFICE OF PERSONNEL MGMT.

History was made, and has set a precedent, for all Lyme disease patients in a lawsuit, in which attorney, William L'Esperance, a longtime part of the Lyme Disease United Coalition, has won a case where the Office of Professional Management (OPM), on the side of the insurance company, has been overruled.

The Lyme disease patient, in the lawsuit, submitted bills for hundreds of medical services, treatments, and tests. The court ruled that the Lyme disease patient wins the case without regard to the medical necessity of the patient; or whether the medical treatments or tests were medically necessary or experimental or investigative. The case is GLIBOWSKI VS. US OFFICE OF PERSONNEL MGMT., 09-CV-1039MCA (US DISTRICT COURT, DISTRICT OF NEW MEXICO).

The case is sealed. However, attorney William L'Esperance has filed the case and outcome with the United States Federal Courts to set precedence to aid all Lyme disease patients in lawsuits against their insurance companies, and OPM, for not covering the ILADS guidelines or Dr. Burrascano's guidelines in treatment of Lyme disease.

What does this mean to each of us?

1. The door has opened for Lyme-treating doctors to accept insurance -- once all is established in U.S. Federal Court. (I will keep you posted about the advance of this outcome.)

2. You may now sue your insurance company for past bills not covered or reimbursed by insurance. The OPM cannot hold you back -- in other words, the IDSA'S guidelines are no longer accepted.

To contact our hero, attorney Bill L'Esperance, e-mail: [email protected]

William L'Esperance, Counselor at Law

P.O. Box 90668

Albuquerque, NM 87199

__________________________________________________________________________________________

William L'Esperance does not want to take on new clients. He is willing to be a resource for out-or-state attorneys handling similar cases.

__________________________________________________________________________________________

Please send notes of thanks to our hero, Bill L'Esperance.

We are winning the battle --

One step at a time --

Judith Weeg, President LDUC
Office: 800-311-7518
Fax: 888-746-3810
E-mail: [email protected]
Website: www.LDUC.org
P.O. Box 86
Story City, IA 50248

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seibertneurolyme
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Haley - Yes I was aware of that lawsuit, but had kind of forgotten about it. Any leads are appreciated.

I took a giant leap of faith today. I am either desperate, or brilliant or crazy or all of the above.

I sent a wire transfer and most of hubby's medical records to a company that provides expert witnesses to lawyers. But they also will work for families and patients as well. Will spend the weekend making sure I sent them all my schedules and research. They actually asked me to send a list of questions I want answered so I feel like they are working for me.

It will be a couple of weeks before I get the reports back, but then I should be able to go out and pick a lawyer instead of them being the ones to pick and choose. The case will already be researched and ready to file.

3 weeks til the deadline of 10/9/12.

Bea Seibert

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seibertneurolyme
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Need to finalize the last 25 - 50 pages tonight and then the expert witnesses will have the entire medical file to review - All 1150 pages.

I ended up hiring 7 experts - an ER doc, an ER nurse, a pulmonologist (lung doc), an infectious disease doc, a cardiologist, a hematologist and a "Standard of Care" doc. Decided to cover all my bases.

The company has assured me that if 2 or 3 of the experts give positive opinions that they will be able to find me a lawyer. They said they do that all the time.

Keeping my fingers crossed.

Bea Seibert

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Rumigirl
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Bea, thank you, thank you for all of us and for you to go to these lenghs. It is SO important, as you know so well.

Do any of these experts know about Lyme and TBD's, or is that not important at this point? I guess you first have to get lawyers to take the case on, and deal with an LLMD to testify later.

I know from having gone through lawsuits before involving medical issues (car accidents), it is A LOT of work!!

But owe it to yourself, to Steve's memory, and eventually, maybe to other TBD patients.

We are all rooting for you.

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Judie
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Hi Bea. Thank you sooooo much for the update. I'll be praying, hoping and doing all that good stuff. I so want this to have a positive outcome for you!
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Dekrator48
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Praying for you and all to go well, Bea!!

[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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Dogsandcats
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It doesn't seem like two years have passed since Steve's death- ofcourse I am not you. I am sorry - again- for your loss.

I am very proud of you for pursuing this most needed topic.
The whole medical "dead heads" will stick their head in the sand until something smacks them.

I am praying for your strength and wisdom, along with your healing heart.

--------------------
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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seibertneurolyme
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Rumigirl - By the time the Expert Witnesses have reviewed the medical file they will know a lot about babesia if they did not before. LOL

I sent them the babesia chapter from the textbook - Tick-Borne Diseases in Humans. Book was published in 2005, but it does a really good job of summarizing the medical literature up to that point.

Plus I included several relevant journal articles and abstracts.

I ended up including 70 exhibits with all the medical records. Some of the exhibits are just specific records they need to focus on with my comments. Other things are schedules showing hemolysis (the hospital refused to let me consult a hematologist).

Below is one of my exhibits.

Why Spouse Thought Steve Had Babesiosis

• Well documented history of chronic infection with babesia duncani (WA1) and most likely additional other unknown species of babesia-like blood borne protozoa. Positive blood smear at the same time as negative antibody tests for babesia duncani (WA1) and negative PCR tests for babesia duncani (WA1) supports the possibility of other unknown species. Never had any positive tests for babesia microti.

• 2 recent tickbites – approximately 4/1/12 while off all antimicrobial medications and herbs and on 5/29/12

• No tickborne testing following second new tickbite on 5/29/12 when patient became much more ill necessitating 11 ER visits in 3.5 months. Outside treating physician was treating on clinical basis.

• Onset of symptoms in summer is consistent with potential new babesia infection.

• Return of seizure-like activity – historically multiple times daily seizure-like episodes of approximately 10 year duration ceased with aggressive babesia treatment and were absent for about 17 months.

• Babesia is well documented as a potential cause of ARDS – patient/spouse did not know that lung failure and ARDS were not the same

• Patient/spouse felt the trigger for the initial lung injury was babesia treatment related – ie the addition of pulsed flagyl to the babesia treatment regimen. Delayed onset of ARDS to babesia treatment is the classic textbook presentation of ARDS caused by babesia.

• Fevers, hemolysis, mild headaches, dizziness/off balance symptoms all historically correlated with babesia infection in patient and previously responded to aggressive babesia treatment.

• Medical literature supports low grade chronic persistent babesia infection – not necessarily reflected in IDSA guidelines as those were last updated in 2006 and many more transplant cases have been reported since then that were traced to asymptomatic blood donors with undiagnosed chronic babesia infections.

• If the babesia infection was due to the new tickbites the onset of the lung failure was 3.5 months after the second new tickbite which is consistent with medical literature as well. Onset of acute babesia symptoms can be anywhere from days to weeks to months or even years after tickbite – the majority of literature cites up to 9 weeks I think.

• During hospitalization – fevers continued (initially masked by steroids) and so did hemolysis.

• Risk factors for babesia – patient was elderly (age older than 50 per medical literature), recent tickbites, male gender is listed in some medical literature (connection to testosterone I believe), prior history of chronic babesiosis

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seibertneurolyme
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Thanks for the words of encouragement everyone.

Dogs and cats - yes 2 years on 10/9/14. Sometimes it seems like just yesterday and other times it seems a lifetime ago.

I find it very appropriate that last year on the anniversary of Steve's death I stayed in a local hotel room to watch the Dr H interview with Katie Couric (do not have a TV). Then I treated myself to a steak dinner at a local restaurant and was the only customer in the entire restaurant.

This year I will be in Washington, DC at the ILADS conference - the first one I have ever attended.

Bea Seibert

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seibertneurolyme
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Rumigirl - Well it looks like I am paying to educate the docs who are reviewing Steve's medical file, I overlooked some of the fine print and got a new bill from the company who provides the expert witnesses today.

I sent 138 pages that they consider research material (journal articles and probably the book pages - need to confirm their count). Anyway those pages cost 5.00 each to be reviewed rather than 1.50 each. So 3.50 x 138 x 7 experts = 3283.00

I am getting very close to the 25,000 I had allocated to get the case filed.

I still think it is worth it to get justice for Steve.

One very generous member at MDJunction recently donated 1000.00 to my legal defense fund which was greatly appreciated.

Bea Seibert

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Rumigirl
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Whew, someone should be paying YOU! We hope that eventually they do. What a huge amount of work and expense.

Onward and upward.

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seibertneurolyme
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I called the company to discuss my bill and ended up talking to the director for fifteen minutes. He shared his family struggles with tickborne illnesses and ended up talking me into hiring an 8th expert.

After he called expert number 8 - an internal medicine / G.I. doc he sent me an email about their discussion.

The 8th expert is apparently somewhat lyme literate. He told the director of American Medical Experts that my case would make history if I was successful and that he was looking forward to reviewing it.

I think I made the right decision to hire the 8th expert.

Bea Seibert

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/11226968-update-on-lawsuit-for-failure-to-diagnose-babesia

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Dekrator48
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Bless you, Bea!

I am praying for you every step of the way!!

[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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poppy
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Not understanding why 8 experts are necessary. Are there really 8 people in the country outside of lyme doc offices that really understand tickborne diseases?
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Judie
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"The 8th expert is apparently somewhat lyme literate."

Woohoo!!!! That's fantastic news! I'm glad you got to talk to the director. He sounds like he really wants to help.

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hopingandpraying
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God bless you, Bea! I've been praying for you that this would all move forward.

Thank you for all your hard work, courage, dedication and fearless determination in pursuing this and truly setting a precedent. You also have my deepest gratitude for fighting not only for Steve, but also for the WHOLE LYME COMMUNITY.

You are the voice that will hopefully get Lyme and co-infections to the forefront.

Bea, you are everyone's hero and we truly commend you for not backing down. God will give you the strength and wisdom to see this through. Keep on fighting the good fight, because we are ALL behind you!!

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steve1906
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You're getting closer,good luck Bea!!! Keep Strong

Steve

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Everything I say is just my opinion!

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Rumigirl
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Wow, that is great that the director has family struggles with TBD's! That sounds weird, but I mean in terms of him helping your case.

Also good that the 8th (!!!) expert is somewhat LL. It's sounding much more hopeful.

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seibertneurolyme
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Poppy,

I have no idea what the laws are in other states. But it is my understanding that in Virginia in medical malpractice / wrongful death lawsuits you must have an expert that practices in the same specialty as the doc you are suing.

And you are only allowed one expert in each specialty. You can have extra docs in non related specialties as well including economists to justify the amount of lost wages etc.

I am having a hematologist expert witness review the file because the hospital would not let me consult one even though they could not explain the anemia and decreases in red blood count and hemoglobin and hematocrit. There was very significant hemolysis during Steve's hospitalization.

Anyway in Steve's case I want to sue the ER doc, at least 3 infectious disease docs and probably 2 pulmonologists (lung docs). I need the experts to tell me if I should also sue the cardiologist and the 5 general M.D.'s Plus there are the students and fellows - I think at least one of those should be included - the one who made so many mistakes in taking the medical history.

I did not include the neurologist because he was probably the only doc that did not think Steve was faking seizure-like activity even though his EEG was normal. Plus there is little in the medical literature to support cerebral babesia although I am pretty sure that is what Steve had.

I am also having what is called a "Standard of Care" doc review the file. That doc will try to determine what is the generally accepted standard of care - is it the IDSA guidelines for example and if so should Steve have received a red blood cell exchange transfusion for pulmonary compromise.

And other questions such as was the dose of steroids within generally accepted practices - it far exceeded what I can find in the medical literature or the prescribing info on the meds used.

The reality is that at any point in time during his month in the ICU (3 weeks on a ventilator) theoretically any of the docs could have ordered more babesia testing or started empiric treatment based on clinical diagnosis.

As many of you may remember I was focusing on getting them to test for babesia duncani (WA1) rather than babesia microti which Steve had never had antibodies to. I also tried to get more blood smears done.

In my research I did not find a single source that claims one negative blood smear is sufficient to rule out a babesia diagnosis as the hospital docs claimed. Instead every source said several or many or was even more specific and said 2 thick and 2 thin smears were required.

When I get all those links together I will post that as another thread. I hope no one else ever needs it, but having all the information on testing together in one place is very much needed.

Bea Seibert

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seibertneurolyme
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I am really glad I got to talk to the director as well. He says he is having some of his most trusted and experienced reviewers work on the case. He really wants this case to succeed.

The plan is to get the reports from experts back on Friday, October 3rd and that will give me until October 9th to find a lawyer and get the case filed.

Bea Seibert

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steve1906
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Bea, I found this interesting

Lyme Disease Misdiagnosis Disaster In The United States

Every week we receive many inquiries from people who have been diagnosed with Lyme disease who want to know if they have a possible medical malpractice claim for the failure of their primary care physicians or other health care providers to order timely and appropriate medical testing for Lyme disease that may have diagnosed their condition earlier, when treatment options may have been more effective and which could have avoided their suffering from the ongoing symptoms they believe are the result of “chronic” Lyme disease.

We suspect that the increasing number of inquiries we receive about Lyme disease misdiagnosis is a sign of an impending Lyme disease disaster in the United States.

The stories of chronic debilitating conditions that these people believe are due to their misdiagnosed Lyme disease are frightening and should serve as a warning and wake-up call to everyone who may be potentially exposed to Lyme disease in the United States: we must be vigilant in taking precautions to avoid exposure to Lyme disease and we must insist that our medical providers test us for Lyme disease if our symptoms suggest such testing.

The Official U.S. Statistics Support Our Concern

The CDC reports that Lyme disease is the most commonly reported vectorborne illness in the United States (vectorborne illnesses are those caused by an infectious microbe that are transmitted to people by blood-sucking arthropods such as mosquitoes, mites, fleas, and ticks).

In 2011, Lyme disease was the 6th most common nationally notifiable infectious disease in the United States, with 96% of the cases of Lyme disease reported in these 13 states: Connecticut, Delaware, Maine, Maryland, Massachusetts, Minnesota, New Hampshire, New Jersey, New York, Pennsylvania, Vermont, Virginia, and Wisconsin.

Source

What Is Lyme Disease, What Causes Lyme Disease, What Are The Symptoms, And How Can I Avoid Getting Lyme Disease?

The CDC provides the following guidance with regard to these issues:

Lyme disease is caused by the bacterium Borrelia burgdorferi and is transmitted to humans through the bite of infected blacklegged ticks. Typical symptoms include fever, headache, fatigue, and a characteristic skin rash called erythema migrans.

If left untreated, infection can spread to joints, the heart, and the nervous system. Lyme disease is diagnosed based on symptoms, physical findings (e.g., rash), and the possibility of exposure to infected ticks; laboratory testing is helpful if used correctly and performed with validated methods.

Most cases of Lyme disease can be treated successfully with a few weeks of antibiotics. Steps to prevent Lyme disease include using insect repellent, removing ticks promptly, applying pesticides, and reducing tick habitat. The ticks that transmit Lyme disease can occasionally transmit other tickborne diseases as well.

Source

Based on our conversations with Lyme disease sufferers who have contacted us, we have found that many were not properly diagnosed with Lyme disease until they visited a “Lyme disease literate” physician, and that prior medical providers never considered that they might have Lyme disease or tested them for Lyme disease.

Many were misdiagnosed with other ailments and provided treatment for those ailments that did not properly treat their Lyme disease. Most had been suffering unnecessarily severe and chronic conditions that affected their daily lives for an extended period of time before they received the proper diagnosis.

It appears that the delay in proper treatment for Lyme disease has caused many of these people unnecessary mental anguish, physical suffering, and debilitating symptoms that are taking longer to resolve after appropriate medical treatment has begun (some have reported that their symptoms due to Lyme disease have not fully resolved). Most are frustrated that their true medical condition (Lyme disease) could have and should have been diagnosed and easily treated by their primary care providers much earlier.

While the strongest cases of medical malpractice involving the misdiagnosis of Lyme disease may be those cases where the Lyme disease testing came back positive for the disease but the results were either not communicated to the patient or the proper treatment not started promptly, there are other cases of Lyme disease misdiagnosis or late-diagnosis that may be due to medical malpractice.

If you believe that you or a family member’s Lyme disease was misdiagnosed or late-diagnosed by a medical provider and you suffered injuries or losses as a result, you should consult with a local medical malpractice attorney (Lyme disease attorney) to discuss your possible medical malpractice claim.

Click here to visit our website or call us toll-free at 800-295-3959 to be connected with medical malpractice lawyers (Lyme disease lawyers) in your state who may be willing to investigate your possible Lyme disease claim for you and bring a medical malpractice claim on your behalf, if appropriate.

https://www.medicalmalpracticelawyers.com/blog/lyme-disease-misdiagnosis-disaster-in-the-united-states/

Steve

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Everything I say is just my opinion!

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rzh1
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Mrs Siebert,I know you were asked by the VSDH, did Clongen’s testing identify the species of Babesia in the blood smear? Also, do you know what assay Clongen used to identify Babesia on the smear (i.e., was it identified by PCR using specific primers, or by identification of the parasite through microscopy)?

If you answered that question,sorry,I have not seen it.

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poppy
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Thanks for explanation, Bea. I feel a bit guilty that you took the time away from the case to explain it to us.

The thing that makes me the maddest about all this, is not that they didn't know very much about babesia, but that they ignored what you said, as a very knowledgeable patient advocate. Good doctors will listen to any reasonable source of information.

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seibertneurolyme
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rzh1 - CLongen identified babesia like organisms thru microscopy - a stained blood smear.

The PCR test they did for babesia duncani (WA1) was negative.

Subsequently Fry Lab did additional testing on blood drawn post mortem - they found 3 different unknown uncategorized species of blood borne protozoan by PCR. These are organisms listed in the GenBank but that is all I know about them - I just have a string of numbers for each organism.

I was not surprised at the negative PCR - we had had that test done by Clongen at least once before - also had a babesia species PCR (8 or 9 different species but excludes babesia duncani) done by that lab previously as well which was also negative.

After 6 rounds of IV clindamycin and quinine plus malarone and doxy hubby's PCR for babesia duncani had gone negative from 1:2048 initially back in December 2010. But after 10 months of continued treatment - had switched from the IV clindamycin and quinine to high dose lariam and continued with the malarone and doxy Clongen again found babesia like protozoa by microscopy.

I absolutely believe that the Clongen microscopy tests were accurate and not false positives. 3 times during that 10 month time frame hubby tried to stop malarone. Within 2 or 3 days each time the nausea, dry heaves and vomiting returned as well as mild Parkinsonian tremors. Also mild off-balance / dizziness symptoms and mild headaches and mild night sweats.

So at the 10 month point we added in more meds. Oral flagyl for the next 4 months I think. And oral ivermectin for the last 2 months. Also added in artemesinin, ECGC, plus some cryptolepis and alchornea.

At the 14 month point hubby stopped all meds and antimicrobial herbs for the first time in 3 years. We did not think he was cured, but the plan was to get off meds and try one more time to identify the actual pathogens - lyme or babesia or bartonella or whatever.

Hubby was off meds for 2 months - February - April of 2012. Felt the best he had in over 10 years since he first got sick with tickborne illnesses. Mild babesia symptoms were coming back, but no tremors or seizure-like activity. But then around April 1 he got the first new tickbite.

He was helping a 3 year old that got bit by a copperhead get to the ER. The kid was given antivenom and made a full recovery.

2 weeks later we did the live blood analysis by phase contrast microscope. They saw babesia on 2 views of the 27 video clips. The hospital docs not only did not look at the flash drive I gave them, but they lost it.

All the testing we did was negative at this point unfortunately. But within a week of resuming meds - we were doing a challenge test - hubby had his first ER visit in 7 months. HIs seizure-like spells which had been gone for about 17 months came back.

The head CT said he might have had a mild stroke, but we did not think so as the symptoms were just the same old symptoms he had had for 10 years. Anyway - the small local hospital does not do MRI's on the weekend so by Monday the brain MRI only saw the same white matter lesions that had been present for 10 years and no evidence of a stroke.

The first dose of larium caused significant hemolysis and that is what landed him in the ER.

On May 29 things went from bad to worse. 2nd new tickbite. Hubby had just switched from doxy to mino a week or 2 prior - have no idea if that would have made a difference. Two days later between the ambulance and the ER he was given 8 mg of IV Ativan in about an hour and a half to control the seizure like activity. Hemolysis the worst he had ever had per bloodwork.

His PCP put him on IV rocephin. We continued with the lariam and malarone as well. Made many med adjustments in the next 3.5 months but nothing seemed to work. 11 ER visits until the final one after 3 days of shortness of breath.

I honestly think his babesia was never cured, but I do think there is some possibility that he could have picked up an additional strain from one of the 2 new tickbites.

Bea Seibert

[ 09-27-2014, 04:36 PM: Message edited by: seibertneurolyme ]

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seibertneurolyme
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Also while on all those babesia meds hubby had 5 hospitalizations for fevers over 101.6 in 2011. We continued babesia treatment during all those events. He was diagnosed with serratia marsescens 2 of the 5 times and actually had sepsis the 5th time and had the PICC line pulled and not replaced - had been replaced 2 or 3 times during all this.

The 4th fever I think it was when he had what we thought was a rocky mountain spotted fever rash. Two weeks later he had a Rocky Mountain Spotted Fever titer of 1:64 - I think it was probably some other strain of rickettsia but who knows.

The elevated antibodies for typhus, ehrlichia and anaplasma did not show up until August 2011 thru April of 2012 (highest antibodies in January). I suppose it is possible he was bitten by a tick in 2011, but we always felt that the IV flagyl that started the fevers had killed off some babesia and whatever was hiding in his red blood cells came out.

I finally got through to Brian Fallon's office on Friday. Even though they have had Steve's brain and other specimens for almost 2 years they still have not done any testing. He is meeting with the neuropathologist next Wednesday and is going to tell me what the plans are for testing going forward.

Everything seems to be moving in slow motion except for the statute of limitations.

Bea Seibert

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seibertneurolyme
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Steve,

Yes I had seen that article. Have that stuck in my to call pile.

The reality is that in Virginia in a wrongful death lawsuit I have to prove not only that the misdiagnosis caused the death, but that treatment would have saved the person's life.

There is no question that hubby died from lung damage - the hospital and the autopsy neither one found the cause of the lung failure.

Babesia is well documented in the medical literature as a cause of ARDS (Acute Respiratory Distress Syndrome)- it is even listed on the CDC reporting form. Per the medical literature the fatality rate for babesia is listed as 2 - 5 percent depending on the source. ARDS has a fatality rate of 25 - 40 percent.

Most ARDS patient's die from the underlying cause of the ARDS which is most often sepsis - the lung damage is not what kills them. Given time the body heals the lung damage and most survivors have little long lasting effects or they are minor.

I have a stack of about 20 journal articles for patients that had ARDS from babesia. Have not had time to summarize them to see what the survival rate was - but each case is so individualized that may not really make any difference anyway. I did send all those journal articles to the doctors reviewing the case. Those were the pages I was charged 5.00 each to be reviewed by each doctor.

So the argument is that not treating the babesia timely is what killed Steve. And the way I read the IDSA guidelines treatment should have included both babesia meds and a red blood cell exchange transfusion which filters out both infected cells and the cytokines or antibodies (not sure which) that cause the inflammation and the lung damage.

The autopsy was supposedly independent - so of course they did not test the spleen and liver and bone marrow to look for babesia. The hospital has not been able to tell me if they still have the autopsy specimens - have your lawyer call us. Plus I think most likely the preservatives would probably make the specimens unusable anyway - need to find out about that.

So for now what we have is one positive Clongen bloodsmear, fevers and hemolysis, ARDS and the Fry Lab report which is for research purposes plus all the historical babesia tests from Fry and Clongen and IGeneX and Focus Diagnositics.

Bea Seibert

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rzh1
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Mrs Seibert,I wish you luck on your case,but you do know that the court room can be a nasty place.

The most likely scenario is that the jurors will have very little to no knowledge of TBD's.

The VSDH has stated that, thus far, tick surveys and human case investigations have turned up no evidence of Babesia microti in Virginia’s ticks, or of authochthonous transmission of babesiosis within the state.

Your evidence is that Clongen identified babesia LIKE organisms thru microscopy,and that Fry Labs found 3 different UNKNOWN UNCATERGORIZED species of blood borne protozoan by PCR.

I assume you will have your LLMD as an expert witness.But as you know,LLMD's are not state board certified,and I think the Dr's attorneys would have a field day on that point.

That is going to be big hill to climb to prove negligence on a doctor with that kind of evidence.

As you know in Virginia,you must put the estimated amount of legal fees into an account before the case can proceed.

You talk about suing all these Dr's.If they each have their own attorney,that could amount to a lot of money.

I think it is going to be hard to get a law firm to take this case on contingency.Im sorry for being such a Debbie downer,but I am just being realistic.

Good luck.

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seibertneurolyme
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Poppy - No need to feel guilty. It is all a learning experience for me as well.

I might have been willing to just let things go and not have sued even with the accusations of Munchaussens and implying that I poisoned Steve with nutritional supplements and herbs - all documented in the progress notes of the medical records - except for the final letter from the Infectious Disease doc.

One month after Steve's death the doc got the preliminary report from Fry Lab and he sent me the results with a letter.

I could have even overlooked the statements that we did everything we could - had already seen that in the progress notes. But what I could not overlook was the disbelief in the Clongen blood smear - don't have it in front of me - but the letter used the words supposedly or reportedly or something like that. And then to top it off they said, and even if he had babesia, we treated him for that.

Yes, he did get 6 days of treatment but only after I went to the hospital medical ethics board and the paperwork I signed said that they felt the treatment was futile. So in other words they already knew that it was too late at that point.

The 3 weeks off meds was way too long. Some of the ARDS babesia case studies I think the patients survived with a delay of maybe a week, but longer than that the survival rate went way down.

And the more I researched the records the more things I had questions about.

I personally think waiting 42 hours to do the first blood smear was too long. He was transferred from another hospital with the diagnosis of babesia plus the lung failure and a-fibrillation and his other tickborne illnesses of lyme and bartonella.

Going to stop for now. I just felt I needed to explain that I think the hospital made enough mistakes to make this a winnable case - but it is not a simple case but then what is when it comes to tickborne illnesses.

Bea Seibert

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seibertneurolyme
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rzh1,

I think you are incorrect regarding the legal fees. I originally thought the same thing, but I think that the lawyer can advance the fees to the client if they take the case on contingency.

But regardless, I did have one lawyer who I was able to convince from a preliminary review of the chart that Steve died from babesia. That lawyer was with a smaller law firm and did not feel he had enough time to prepare the case before the statute runs.

In reality the discovery process takes place after the suit is filed, but many of the lawyers like to pick and chose their cases and don't want to take a chance on messing up their winning track records so they do all the discovery work before even filing the case.

All I can do is hope for the best at this point. I have come too far and spent too much money of my own ($29.000 plus) to give up now.

There have been way too many unexpected twists and turns in the road - such as even finding the American Medical Experts company (a Google ad which I almost never even click on - I was searching for something else) to discovering that the director has personal experience with tickborne diseases.

So as not to offend anyone I will just say that I feel I am being led by a higher power at this point.

The next 2 weeks will tell the tale. Of course it is not the end of the fight, just moving past a major hurdle to the next stepping stone.

Bea Seibert

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seibertneurolyme
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rzh1 - I absolutely never thought Steve had babesia microti - that is one of the major issues with the case. The docs initially only tested for that species when previously hubby had only ever had antibodies to babesia duncani.

And it doesn't really matter what the Virginia Dept of Health thinks - what matters is the patient's medical records which were ignored.

The case will not say that it is a missed diagnosis of babesia microti - what it will say is that it is a missed diagnosis of a babesia like blood borne protozoan. I am not naming the species because that is not really known at this time. If the hospital had reported the case to the CDC as they should have then we might actually know what species was involved.

One of the reasons a blood smear is the gold standard test for babesia is that it can detect other species besides babesia microti and babesia duncani. There have so far been at least 10 species worldwide which have been found in humans.

I personally think one of the reasons many people in the U.S. have to treat clinically is because so few labs offer tests for any of the other species besides b. microti and b. duncani.

That is one of the things I plan to do when I win my case - I want to fund research into the other species that I think are being missed in humans. Fry Lab verbally told me about a year ago that they are researching at least half a dozen different protozoa besides FL1953. So there is evidence that people are infected with other species - it has just not made it into the medical literature yet.

Bea Seibert

[ 09-27-2014, 06:03 PM: Message edited by: seibertneurolyme ]

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seibertneurolyme
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rzh1 - My final word on the subject. Steve and I learned early on that you can't be diagnosed with something you are never tested for if the doc does not believe in clinical diagnosis and diagnoses only based on test results.

If you don't do the test it is easy to say someone does not have an illness. But there is no validity in that claim unless the illness is tested for and comes back negative. And even then the question is how valid is the test.

Not knowing how to test for an illness is inexcusable in my book. There are many resources a doctor and hospital have to find out the correct tests for any illness.

And when you have a month to look something up and do not do so that is even worse.

And yes, the docs knew what they should be testing for - there were 4 letters added to the file including the CDC guidelines on how to test for babesia among other things.

A quote I read somewhere seems to fit here - In the information age, ignorance is a choice.

Bea Seibert

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Judie
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" The hospital docs not only did not look at the flash drive I gave them, but they lost it."

Good lord! That hospital sounds so incompetent. I'm so sorry it's such a string of BS that you've had to deal with Bea.

I really want you to win!!!

"And then to top it off they said, and even if he had babesia, we treated him for that. "

Wow, that sounds like negligence to me.

Don't listen to the doubters Bea. I have faith there's a lot of evidence that you have and it would take too much time to post it all here on Lymenet.

Keep going!!! Do what you need to these next couple weeks and don't give up. It's not over yet!

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LisaK
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GOd bless!

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Dekrator48
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Believing that God is with you, and leading you, Bea.

Praying for all that you need.

[group hug]

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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

Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
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Thanks Everyone for the words of encouragement.

Starting a 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

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

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