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» LymeNet Flash » Questions and Discussion » General Support » Anyone hear from Bea?

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Author Topic: Anyone hear from Bea?
Jessiep
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I've been watching for an update.....
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Keebler
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-
Her last two posts about Steve:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031087;p=3#000216


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031087;p=3#000229


She also posted today in another thread about another unrelated topic, so she is apparently still holding steady and has no other news about the hospital & Steve.

To see posting history, just click onto a poster's name.
-

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momindeep
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Anxiously waiting to hear also...
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seibertneurolyme
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Sorry I have not posted in the last couple of days. It seems like 1 step forward and 3 steps back. Will post a more detailed update tonight.

Bea Seibert

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a mom
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Bea needs help finding a direction to look in to find out what is wrong with Steve.

So far nothing has come back with anything the doctors can hang their hat on.

She is requesting hematology consult and asked their LLMD be brought it. No response from hosptial doctors yet.

I asked her if she would request a parasitologist.

She told me this morning that Steve spiked a fever again.

IV Diflucan and vancomycin were d/c'd.

The Zosyn still on.

Mepron and azith on until Wed.

They reduced the NO today. (do you guys know if that's normal?)


She's been trying to get lab reports. It sounded like everything is on computer, so you have to wait until the file is uploaded.

She's waiting to get clongen report, it's suppose to be back now.

I wish Roanoke would call in other consults if they are stuck and can't figure it out....Steve's life is hanging in the balance here...

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glm1111
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Bea,

I am just wondering since Steve tested positive for something similar to strongyloides, whether the docs might be open to testing him again for this infection.

I am just thinking that if he tests positive and they treat him with a strong combo of antiparasitics, it could also hit any Babs that might be there.

Just thinking of another angle here. been watching and reading the threads and praying for you both.

Gael

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PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

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seekhelp
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Has anyone called Clongen and demanded the analysis be completed ASAP given the urgency. This lab can't get that many blood smears/tests that have this incredible level of urgency. Like ERs, this one needs to be pushed to the top. I can't imagine what could hold it up.
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seekhelp
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I was also curious if there was any way Dr. K in WA could help???
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poppy
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Well, do you want Clongen to do the best job they can or a rush job? If they are looking really hard at a blood slide, it takes time. They know this is urgent, so there is no point in hounding them.
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a mom
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Bea: are they checking for the serum levels of the Zosyn? peaks/troughs?

You proababy know about Zosyn, but here is link to Drug.com info:

http://www.drugs.com/pro/zosyn.html#Gfb51a916-03dc-45ce-890e-55f7a2cadf3b

Were you able to get Steve's clotting times?

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a mom
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Bea: I Googled "parasites that cause pulmonary failure". Wiki was the first link that came up. Wiki is not a validated source, but it's often a starting point:

http://en.wikipedia.org/wiki/Parasitic_pneumonia

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a mom
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Eosinophilic pneumonia

http://en.wikipedia.org/wiki/Eosinophilic_pneumonia

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a mom
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Long Shot: "Rare Lung Diseases"; it is not a long document, some infectious causes are listed

http://tinyurl.com/9c3ltet

http://preview.tinyurl.com/9c3ltet

Case study on page 190, gender/age don't match Steve, but do any symptoms...?

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beaches
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a mom, I really think at this point that Bea needs to write a strong letter to the CEO of the hospital--cc'ing the CFO and the chiefs of ID, and whatever other services have visited Steve, along with any other department she has requested a consult with, such as hematology, as well as the TV station that aired the interview.

She needs to state that given the circumstances, it is quite appropriate to have Steve's LLMD involved in his care, that his slides need to sent to the doc at Columbia ASAP, etc.

Bea is a great writer and I know she can do this. In fact, I'd much prefer she do this than take time to update us here.

"They" will only do so much when you make an oral request. Our spoken words dissipate into thin air and as far as anyone is concerned, you might not have ever uttered them.

But once you put something in writing, it's a record and it is there forever. And my advice would be to send everything either via email where you can document that the recipients received it or send the letters via certified mail, return receipt -- preferably using both methods.

And, I would encourage her to also cc a law firm.

Oh, and that is total BS about the wait time on his hospital labs. The vast majority of labwork done in a hospital is available within a couple of hours, with the exception of cultures or other labwork that has to be sent out to specialty labs. If you have cooperative/friendly docs, they will go up to the nurses' station and just print them out for you. If you don't, you can go to medical records to obtain them.

Can't help feeling like they're jerking her around.

Bea, in addition to speaking with all these people, please put all your requests in writing from this point forward, and also document each conversation.

Your pen is your sword.

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a mom
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Bea: is anything sounding familiar in the searches? Are there other key words you would like help searching?
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lax mom
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Tularemia...causes fibrosis and pneumonia...it's impossible to culture due to risks to lab personnel.

http://en.wikipedia.org/wiki/Francisella_tularensis

It can be tick-borne and rabbit borne and even air borne, as well as weaponized.

Did he ever hunt rabbits? Did he ever cook rabbit without gloves? It can get through the skin if you don't have on rubber gloves.

It's also called the lawnmower disease because you can run over a dead animal and inhale the bacteria and not know it.

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lax mom
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http://www.nejm.org/doi/full/10.1056/NEJMoa011374#t=article

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♥ ♥ ♥ ♥ ♥
(aperture)
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a mom
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Bea, Tuberculosis can have odd presentation...another long shot...did anyone check Steve for it?

http://www.emedicinehealth.com/tuberculosis/page3_em.htm

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lax mom
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Brucellosis can cause weird things as well.

http://www.ncbi.nlm.nih.gov/pubmed/9097372

http://cid.oxfordjournals.org/content/37/7/e95.full

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lax mom
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Q fever can affect the lungs.

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002313/

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lax mom
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What about diseases associated with his former profession:

Asbestosis causes fibrosis:

http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0001177/

http://www.iqmesothelioma.com/mesothelioma-patout-lumber-yard-jeanerette--9-2151.html

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a mom
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http://ukpmc.ac.uk/abstract/MED/4037521

"Causes of mortality in patients with Adult Respiraotry distress syndrome"


"Our findings indicate that sepsis syndrome, rather than respiratory failure, is the leading cause of death in patients with ARDS"

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From online medical dictionary:

sepsis syndrome

A constellation of signs, Sx, and systemic responses caused by a wide range of microorganisms that may eventuate into septic shock; SS is a systemic response to infection

Sepsis syndrome, defining parameters
* Temperature Hypothermia < 35C-96F or hyperthermia > 39C-101F
* Tachycardia > 90 beats/minute
* Tachypnea > 20 breaths/minute
* Site of infection Clinically evident focus of infection or positive blood cultures
* Organ dysfunction 1+ end organs with either dysfunction or inadequate perfusion or cerebral dysfunction
* Metabolic derangement Hypoxia-PaO2 < 75 mm Hg, ↑ plasma lactate/unexplained metabolic acidosis
* Fluid imbalance Oliguria-< 30 mL/hr
* WBC counts < 2.0 x 109/L; > 12.0 x 109/L-US: < 2000/mm3; > 12 000/mm3

Note: The confusing semantics of the terms sepsis, sepsis/septic syndrome, and septic shock are unlikely to be resolved in the forseeable future; the terms sepsis and septic syndrome are essentially interchangeable and would in part overlap with septicemia-the early components of a pernicious infectious cascade that has spilled into the circulation; the term septic shock is used when the process becomes virtually irreversible

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seekhelp
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I understand what you're saying. This is a unique situation. Of course, you would want a lab to do the best job possible and spend adequate time to do a thorough review. I meant if there were 10 tests results to complete, I'm hoping this request is accelerated to the top of the list from a priority perspective as a man's life is at stake and timing is extremely important.

Every test that comes through is important, but I would venture not many are this time-sensitive. I hope that makes sense. I think anyone waiting for their test to be resulted would agree. That said, this may be what Clongen is already doing. I would just double and triple-check to be sure.

quote:
Originally posted by poppy:
Well, do you want Clongen to do the best job they can or a rush job? If they are looking really hard at a blood slide, it takes time. They know this is urgent, so there is no point in hounding them.


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lax mom
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http://en.wikipedia.org/wiki/Yersinia_pestis

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Dekrator48
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Please see Bea's latest post titled "Steve has passed on" [Frown]


http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/120582

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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

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Rumigirl
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It's a moot point now, but, seek, Dr. K at Clongen was very aware of the situation, was doing everything possible to help, including praying, so don't bash or hound the lab! I know you meant well on this. He's a very caring and knowledgeable guy. Just so you know.

It's unbelievably sad. It also really makes me angry (that the hospital docs were so recalcitrant, etc).

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