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» LymeNet Flash » Questions and Discussion » General Support » URGENT: Update from Bea about Steve:NEEDS PRAYERS 10/6 (Page 1)

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Author Topic: URGENT: Update from Bea about Steve:NEEDS PRAYERS 10/6
Dekrator48
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I copied the 2 last posts that a mom posted after she talked to Bea. I'm putting this in Medical for now so everyone will see it:


posted 10-06-2012 11:34 AM
--------------------------------------------------------------------------------
HELP!!

Bea called and asked me to post a New Thread. I don't know how to do that. Can anyone start a New Thread for Bea's info:

Steve is dying from ARDS or lung failure from unknown causes. Docs think his heart will give out but can't say when. For example something as simple as turning him over in bed can cause his oxygen levels to fall -- even on a ventilator at maximum (100 % oxygen).. Other times his heart rate slows to dangerously low levels instead of the oxygen falling.

The docs are pushing for me to change Steve's code status (now at full code) or even to pull the plug on the ventilator. Undecided what to do about code status right now -- but pulling the plug is NOT an option at this time.

I am trying to decide what to do next to help Steve.

Once I get the Clongen blood smear results I need to come up with a new plan of action.

Addendum:

Babesia meds are still on, WBC down to 11,000. She did not say if he had fever.

Bea is trying to reach a doctor Dolores recommended: Dr. Thomas W. Nash (Columbia Presbyterian). Pulmonary and ID.

Bea called, but office was closed. I sent an email for HELP. Is anyone friends with him and could reach him for Bea?
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a mom
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posted 10-06-2012 11:34 AM
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Prayers needed please. When I called Bea, the Pastor was in the room with them.
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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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Tammy N.
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Thanks Dek, I was just about to do this myself.

Dear Lord, we pray that you are right there in that hospital room beside Steve and Bea. Please give comfort, wisdom, peace and clarity to all who enter that room. If it is your will, please Lord, provide the answers needed to bring Steve back into health and wellness. We pray for a miraculous healing. Please lay a heavy blanket of love and peace over Steve and Bea to see them through this most challenging time. Amen.

Moderators - could you please consider leaving this thread in Medical Questions? The more people see it, the more much-needed prayers will be offered.

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Dekrator48
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Praying and praying....fervently praying for Steve and Bea.

Lord, please hear our cries for help and heal Steve.

I ask this in the name of the Father and of the Son and of the Holy Spirit. Amen

--------------------
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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map1131
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Prayers this is a herx reaction from adding the abx back into Steve's system and not as serious. Prayers for Bea to get some answers and help quickly.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

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FuzzySlippers
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First of all, Bea does NOT -- I repeat -- does NOT have to pull the ventilator nor institute a DNR Code if she feels it's not time to do so.


She should keep in mind that the hospital at this point, especially when they are losing money with his case, will not always have his best interests at the forefront.

They are probably getting all kinds of pressure from hospital Administration and Medicare because of the length of his stay already.


I'm just assuming it's Medicare. It doesn't really matter what the insurance is. They all start to ask questions and place pressure on hospitals when hospital stays become extended.


For example, Medicare stops reimbursing hospitals on alot of things after only five days of a particular patients hospitalization.


Anyway, the ball is in Bea's court right now. If she needs more time to make a decision on behalf of Steve, then she should take that time.


Prayers are being offered up.

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linky123
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Praying.

--------------------
'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28

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poppy
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If this is a babesia herx, it may get better by itself, if they can keep him alive. No one really has a good solution to herxing.

But babesia meds, like malaria treatment, can cause hemolysis, which has pulmonary consequences when enough oxygen cannot be carried by the rbc's that are left. My feeling is that when people say they have a babesia "herx," this is what is happening. It looks like what they need to do is mitigate this effect until he is stable.

In short, babesia causes hemolysis and so does the treatment.

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poppy
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Have they considered plasmapheresis?

http://www.ncbi.nlm.nih.gov/pubmed/9590496

Can someone be sure Bea gets this message? If she needs a new plan, this might be one, especially if she gets any support from the Clongen slide results. Even if she doesn't.

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randibear
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i am so very sorry for all this. only by the grace of God go i...it could be any one of us.

i pray that he gets better and God gives bea the strength to persevere through all this. i could not be so strong.

know that we all are with you bea.

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do not look back when the only course is forward

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FuzzySlippers
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I wanted to add, too, that while I suppose I may be missing something here, I guess I didn't realize that doctors and hospitals were in the business of advising patients' families to pull the plug, or otherwise to authorize a DNR order where the patient in question (1) isn't clinically "dead," in terms of brain function; or (2) isn't otherwise terminally ill.


In this case, it's my understanding that the doctors can't say WHY Steve is in such severe pulmonary distress. The hospital's own consent form said, ``... no definitive diagnosis of Mr. Seibert's lung problems can be made at this time by the patient's physicians at Carilion.''


That being the case, I don't see how -- simply as a matter of logic, much less medicine -- that they are in any position to pronounce Steve's case "hopeless," to suggest that he cannot and will not recover, and to opine that there is "nothing they can do."


It's much more the case, isn't it, that what the doctors are REALLY saying is "there's nothing WE know what to do to help your husband, so why don't you help us out of our predicament by agreeing that everyone should just give up on him?"


That seems pretty outrageous to me. Bea should not be bullied into make decisions that seem calculated to allow the doctors to escape the consequences of their own inability to get to the bottom of Steve's case.


A question to pose to the doctors could be, "If you don't know why Steve is in this condition, what is your basis for concluding that he won't get better and that his case is entirely hopeless?"


Fuzzy


(Note: This is really a very important concept for Bea to address with the doctors who are placing pressure on her. Could someone be sure that she sees this post? It's a logical/legal concept)

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a mom
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Poppy: Bea has seen the paper. But the doctors do not think Steve has Babesis. The tests come back negative, but problem is they do not test for different species or strains. Bea is still waiting for results from Clongen.

Everybody: Does anyone think Steve could have Babesia gibsonii instead of duncanii?

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Pocono Lyme
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Praying hard through the tears.

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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a mom
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You Guys, Bea wants to know if anyone thinks Steve could have Babesia gibsonii instead of duncani...?
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FuzzySlippers
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amom, since Bea is being placed under so much pressure from the hospital at the moment, could you please be sure that she sees what I posted above? Maybe relay the message to her somehow?


Sorry to seem pushy here, but it is really a crucial legal/logic point for her to keep in mind as she fights for Steve's life.


I"m furious that she's being pressured to give up on Steve merely because they can't figure out what's going on.


Bea doesn't need that kind of unethical and unnecessary stress on top of everything else she's trying to get accomplished.

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poppy
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I looked thru all her previous posts and am not seeing any measurement of red blood cells. Her posts only mention WBC count. Surely they are testing for RBCs too. Wouldn't that be a clue of a parasite infection if the counts are off?

Regardless of which babesia he might have, the RBC issues would be similar.

Why is B. gibsoni being considered? It is a veterinary treated disease. There are other babesias in humans, such as MO-1 and divergens. What is really needed in a situation like this is someone like the old FL lab used to do with blood slides. That technique did not require knowing what species was involved like PCR does.

Copied below are the lab results for a dog with B. gibsoni. Seems like it might be similar to all babesias:

Laboratory Findings

PCV/TS (on presentation): 10%, 7.8 g/dL; PCV/TS (at discharge): 24%, 6.6 g/dL
Slide agglutination (macroscopic, microscopic): positive throughout hospitalization (after initial blood transfusion)
Chemistry profile (4 days into hospitalization): total bilirubin 0.6 mg/dL, increased ALP 457 U/L, hypercholesterolemia 420 mg/dL
CBC (4 days into hospitalization): neutrophilia with left shift (seg 20,999/uL, bands 1012/uL), monocytosis (512/uL), thrombocytosis (512,000/uL), regenerative anemia (Hct 24%, reticulocytes 585,900/mm3)
Babesia canis, Babesia gibsoni, Ehrlichia PCR (peripheral blood): negative
Blood smear cytology (ear prick): positive for Babesia gibsoni
Babesia gibsoni PCR (ear prick blood smear): positive

from:

http://www.vmsg.com/babesia-gibsoni

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lyme in Putnam
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Prayers being sent. [Frown]

--------------------
He took u to it, He'll you through

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poppy
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This is from Harrisons, a medical diagnostic textbook:

Diagnostic Approach (on babesiosis)

Regardless of history of exposure to ticks or tick bites, febrile patients living in endemic areas should have Giemsa-stained thick and thin blood films examined for small intraerythrocytic parasites.

Laboratory Tests

Nonspecific laboratory studies

Hematologic
Anemia, thrombocytopenia, mild leukopenia, atypical lymphocytosis
Elevated erythrocyte sedimentation rate
Evidence of intravascular hemolysis
High reticulocyte count, low haptoglobin level, hyperbilirubinemia, high lactate dehydrogenase level, hemoglobinuria

Chemistries
High alkaline phosphatase and aminotransferase levels

Other
Low serum complement levels
Polyclonal gammopathy

Specific laboratory studies
Giemsa-stained thick and thin blood films (see Figure 1)
Small ring forms in red cells; may also have tetrad forms that are diagnostic.
Indirect immunofluorescence antibody tests
Titer rises over 2-4 weeks after the onset of illness, then wanes over 6-12 months.
These tests cannot definitively differentiate between active and past infection or establish recurrent versus recrudescent infection.
Species-specific polymerase chain reaction (PCR) test using the RNA gene
Shows parasitic persistence when blood smear is negative
May be useful for monitoring response to treatment

Imaging

Chest x-ray
May show diffuse alveolar infiltrates in cases complicated by acute respiratory distress syndrome (ARDS)

Diagnostic Procedures

Not indicated

Treatment Approach

Treatment is advised for all patients infected with Babesia.
Treatment for B. divergens infection must be initiated as soon as possible as it tends to be more severe than B. microti infection.
Exchange transfusion in addition to medical therapy may be indicated in patients with severe disease.
Empirical treatment for concurrent Lyme disease and ehrlichiosis may be appropriate.

from:
http://www.harrisonspractice.com/practice/ub/view/Harrisons%20Practice/141106/all/Babesiosis

Have they done all these tests?

[ 10-06-2012, 02:32 PM: Message edited by: poppy ]

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a mom
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Fuzzy, Poppy: just told Bea about your posts.

Steve hasn't changed for awhile. She's going to go upstairs and look on cmputer.

HCT: 25.5
Hemoglobin: 8
RCB 2.5

(didn't knw what the lab's normal val range is.

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a mom
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Do you guys know if it's possible to post video clps here? Maybe someone can tell what the bugs are in teh blood...?
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Rumigirl
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Is there an emergency # to call the Columbia Presbyterian dr?? I'm sure that that's been investigated, but usually there is an

emergency # for drs. Of course, Steve is not a current patient, but still . . . Could someone call the dr's # or the main # for Columbia Presbyterian and see if he can be paged?

In terms of Babesia herxes, one of the best things to help, which could be done in this situation, but they probably wouldn't

consider it, is to do glutathione IV pushes. That helps to clear all herxes. But good luck with a hospital, esp this one on this!! Sad state of affairs!!

Is Bea talking with the hospital administrators? Can she get a lawyer to talk with them ASAP?? They have to know that if they don't do everything necessary to save his life, they will have a lawyer with a wrongful death suit on their hands.

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lax mom
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I think I heard that someone was on his deathbed and the Dr's gave them dialysis...bought him some time???

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sixgoofykids
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moving to general support

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sixgoofykids.blogspot.com

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a mom
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Ok. I must be stupid. I found on U Maryland web page the normal HCT for adult male:
*Male: 40.7 - 50.3%


Bea said Steve's HCT is 25.5.

He's only got about half. Maybe that's why he's having a hard time oxygenating....?

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Keebler
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-
I second Rumigirl's suggestion to explore:

glutathione IV

Especially if he's been or is being given acetaminophen as it's been shown (just this past year) that can cause lung damage since it blocks glutathione production & management in the liver.
-

[ 10-06-2012, 05:07 PM: Message edited by: Keebler ]

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Pocono Lyme
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I searched babesia gibsoni and came across this.

longicin
Apparently it doesn't rupture the red blood cells either. I've never heard of it.
When I tried to post this it said it was closed.
It got moved to general. I wish I'd have copied it before trying to send.


Both longicin and P4 showed babesiacidal activity, in vitro and in vivo.
http://www.researchgate.net/publication/
51816216_Anti-babesial_activity_of_a_potent_peptide_
fragment_derived_from_longicin_of
_Haemaphysalis_longicornis

--------------------
2 Corinthians 12:9-11


9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me.

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poppy
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A low hematocrit can mean HEMOLYSIS! A sign of damage to red blood cells as from babesia and treatment of babesia.

His hemoglobin is also low.

And if that RCB should really mean RBC, then it is low also.

If this doesn't shout "seriously consider a red blood cell parasite like babesia" then somebody is falling down on the job.

[ 10-06-2012, 05:35 PM: Message edited by: poppy ]

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debilyn
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The poster Lymedin2010 seems adept at reading slides. But I don't know how to post a video on here either.

Can someone tell a mom how to post the video of the blood slides, and maybe a more experienced poster can review it?

Bea seems to be asking us for help identifying what is in the slides if I understand a mom correctly.

Sending prayers up non-stop . . .

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lax mom
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Lymedin2010 posted video onto Youtube, then gave us the link here.

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Rumigirl
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Did Clongen get the blood yet to test?? If not, why not?

a mom, or whoever is in touch with Bea, can you relay the message I wrote above about trying to get the Columbia Presbyterian dr paged? I know it may be difficult, considering that Steve is not a patient of this dr., however, it's worth a try. Drs always have an on-call dr.

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FuzzySlippers
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Rumigirl,

Bea says that Clongen is working on the test now, I think? She indicated she was waiting for results.

I don't understand how the doctors can be pressuring Bea to pull the plug when all the tests aren't even back.

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lax mom
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FuzzySlippers,

They are trying to CYA. They are terrified that the tests will come back and they will be forced to act.

If Steve is no longer with us, then they can say "we did all that we could...we just didn't know any better".

This is nearly criminal. Forget the "nearly"...it is criminal.

If I had $, I would wish the best lawyer right by Bea's side. They are putting her under duress, trying to cover their own tails.

Praying for you Steve...prove them wrong. When God is for you, who can be against you?

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sixgoofykids
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For medical help on this urgent problem, please post here - http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/120528?

Let's save this post for prayers and support of Bea and Steve through this tough time. Thank you.

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sixgoofykids.blogspot.com

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seibertneurolyme
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A quick update and then I need to go back to Steve's hospital room -- no internet access there. For now the change in vent settings this morning seems to have stabilized him. But the oxygenation issues are very very serious and things can change minute by minute.

If someone has time and knows how to post links I can email you the link to the video clips -- I uploaded them to yousendit. Then you can post the links in a new thread and everyone can see them. Will be back on the computer later tonight -- probably from 10:00 til midnight or so.

Some of the clips take 4 or 5 minutes to load. There are 28 views in total.

Send me your email addresses to

[email protected]

Maybe you can split up the clips and each person work on posting a few links. Actually they are in groups -- there are either 5 groups of 5 or 6 video clips per group.

Need someone for groups 1,2 3, 4 and 5.

Send me an email with which group you want to work on.

Thanks so much.

Bea Seibert

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poppy
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I think Bea should put in writing her wish that babesia be considered,with or without a lab test that confirms it. There are not tests for all human-infecting babesia and it is hard to find in a slide.

His red blood cell test results certainly point that direction, and if the hospital has not done all the tests that are indicated in that Harrison's excerpt that I posted, then the letter should attach a copy of that excerpt, the link was provided, so it can be copied off the internet.

And it should be made known that if after her request has been submitted, nothing is done about it, that this will be specifically looked for in an autopsy, if it comes to that. That would be the basis for a malpractice lawsuit.

I realize these hospital people are dealing with a new situation for them, but they have not come up with a cause, so they should be willing to consider requests from the patient's wife. This is a reasonable request under the circumstances.

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LymeCFIDSMCS
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Someone asked if anyone thinks Steve might have b. gibsonii instead of b. duncani. Well, obviously, I don't know -- but I want to emphasize again that duncani does cause respiratory failure like this (in studies -- at least on animals -- and in my own experience).

I was dying from respiratory failure in Spring of 2009 from babesia duncani. My symptoms were much the same as described re: Steve (and fit the ARDS dx), but I could not stay in the hospital long term due to severe MCS.

It was after I got home from the hospital stay (where they focused on my heart and kept me in cardiac telemetry/ICU for half my stay) that things got very dire and my respiratory symptoms got much worse.

I had also had a terrible run-in with the infectious disease doc there who not only didn't believe in chronic lyme and was IDSA affiliated but literally came into my room and began yelling at me because I had been tested for unusual pathogens such as Q Fever by my LLMD.

So I was taken home to die and was completely bedbound and unable to speak out loud for months on end (with a few rare exceptions) as my respiration worsened, and ultimately I was using a ventilator to assist breathing, trapped in a corner of my room and adjoining small bath, too ill to crawl even a short distance to leave due to the severity of my respiratory symptoms.

This lasted about 7.5 months, an unending fight for my life.

My respiratory failure got progressively worse after weeks where my bp would not come up above a very low level despite IV saline and meds -- this is a sign of septic shock (along with the low white blood cells and low body temp I also had and shaking chills and very drenching night sweats and other symptoms).

I have been mostly bedbound for most of my adult life, but trust me, this was completely different -- I was dying a horrible death and got to the point of choking, heaving, my throat spasming to get air -- right before I finally got the ventilator. None of my friends or long-time health care providers who directly witnessed it (i.e. acupuncturist who treated me then) thought I would survive.

I spent 7.5 months dying and trapped in that small space, mostly lying on the bathroom floor all day each day which was as far as I could crawl. I could not get to the floor beyond the foot of my bed or the other side of my room or even reach for things most of the time, as my respiration was so bad.

Once I hurried the few feet to the tiny bathroom next to my bed, I had to lie next to the toilet all day so that I'd only have to make the trip once (otherwise could not use it) -- a few gasping choking heaving steps that threw me into blackouts from the resp. distress, and could barely lift myself to the toilet to pee.

I could not bathe or wash my hair for those months. I could not change clothes much as it would worsen my respiration. I ultimately got a ventilator at home which kept me alive and was using it and that began to pull me out, along with Nitroglycerin tablets, heavy antibiotics, and many herbs.

I could not roll over or even more from one side of the bed to the other, except for that daily dash to the bathroom floor where I collapsed in heaving resp. distress. I had to lie very still all day or my breathing would worsen. Nobody would move me or manipulate my body or it would get much worse.

My acupuncturist, who treated me at home as I was dying, later read all of the abstracts I gave her on b. duncani and was just shaking her head, as they described exactly how she witnessed me dying. She was just waiting to get the call that I was dead during that time.

There was a mix-up around this too, that was devastating. I already had a babs. dx from a test for b. duncani from Igenex after a tick bite (and very classic babs presentation), but somehow my LLMD had overlooked that my babs was duncani and not microti, and we retested through Clongen using the babesia species panel, not realizing it did not include duncani. So we didn't at the time think babs was my worst problem.

This proved a near-fatal mistake. I later got records from her and saw that my babs. was duncani, not microti. I had not previously had a copy of the test results, just trusted my LLMDs judgement (and I think it was an oversight).

Others have corroborated this story who were there (though I had to be almost completely alone due to how exhausting it would be for someone to be in the room, as I was nearly dead and even trying to energetically interact at all and the noise wiped me out and caused neurological issues from the stimulation, including seizures), and my doctor now agrees it was likely the b. duncani that was killing me.

At the time, the hospital docs were so horrible I stood a better chance dying at home. I really had no one to advocate for me besides friends making phone calls.

As I said on another thread about Steve, I don't want to hijack the threads about Steve, but I feel it's important to tell this story since Steve and I have similar bugs (b. duncani, bart -- mine was from a dog bite and not henselae -- and Lyme). And though I might not be articulating all of this well, I want to provide hope that one can be very far gone and still come back.

As my respiratory situation got worse, I managed to get a bipap ventilator with a very high output, higher than what is typically required in ARDS or pneumonia, and this is the only reason I'm alive.

Bea does not know this whole story but I have told her some of it. I know it is not exactly the same situation, but I do know that b. duncani can do this, both in research and in clinical practice.

What kept me alive was really only fight and prayer and a lot of interventions. I was doing a whole bunch of meds and also began injecting Ceftriaxone twice a day which helped the babs too (prob. just lessening the load on my system). I was taking aretemesia annua, Nutramedix Quina, and Cryptolepis too.

I think Steve has done pretty much everything I was doing then. Cordyceps mushroom in very high doses seemed to help with the obvious lack of oxygenation (it's also used for lungs in TCM), and I was also taking tons of other herbs and meds as well as a formula for lungs that included elacampane (also considered good for babs).

I was also doing whatever I could to build up my blood because the level of weakness was unreal. I also was using Nitroglycerin, as I told Bea, to help me breathe (and supplemental oxygen which could be pumped through ventilator but this really didn't help, just the ventilator).

Nitroglycerin converts to nitric oxide in the body, which Bea said they were giving Steve. It was one of the few things to help me breathe.

It seems to me that Steve would benefit from blood transfusions for babesia but I can't think of much else that would be helfpul that Bea hasn't already tried.

I just wanted to share what worked for me as a way of saying there's still hope but also just in case any of the above-mentioned items are ones Steve isn't doing now.

Disbelief is really our worst enemy -- medical and otherwise. I think Bea is probably on exactly the right track with b. duncani, but doctors are not used to seeing it in its worst forms.

When I did further research on respiratory failure and babesia, it seemed like those most versed in it were at the hospitals near Martha's Vineyard (i.e. in Hyannis, where they probably see more virulent cases both because there are a lot of AIDS services on the Cape and also b/c it's so endemic on Martha's Vineyard) and in Wisconsin.

Even here, in another area of Mass., the doctors knew nothing about babesia. I am not surprised it is the same where Bea is.

I am praying for Steve and Bea a lot, and really hope he can pull through. And OF COURSE it is not the hospital's decision to pull the plug! Argh.

It should be noted, however, that many hospitals have a policy called a "slow code" where they will not do elaborate attempts to save someone if that person's life is deemed so low quality it's not worth it.

Also Rumigirl I did not ever try glutathione pushes for a herx but I wonder if Bea could get some transdermal glutathione if that would help?

I also second the idea of getting a lawyer involved. Bea is one tough woman, but it does seem like it could help have her wishes for Steve respected.

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hadlyme
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FOUND THIS:She should get to this site and print out the info for the dr's. This article is written by a dr. at Mass General

http://www.aafp.org/afp/2001/0515/p1969.html


Common Complications of Human Babesiosis
--------------------------------------------
Acute respiratory distress syndrome

Anemia requiring transfusion

Congestive heart failure

Disseminated intravascular coagulation

Hypotension/shock

Myocardial infarction

Renal failure

When to Suspect and How to Monitor Babesiosis

ELEFTHERIOS MYLONAKIS, M.D., Massachusetts General Hospital, Boston, Massachusetts

Am Fam Physician. 2001 May 15;63(10):1969-1975.

See patient information handout on babesiosis, written by the author of this article.


In the past decade, cases of babesiosis in humans have been reported with increasing frequency, especially in the northeastern United States. Babesia microti (in the United States) and bovine strains (in Europe) cause most infections in humans. Most cases are tick-borne, although cases of transfusion-associated and transplacental/perinatal transmission have also been reported. Factors associated with more severe disease include advanced age, previous splenectomy and immunodeficient states. Symptoms include high fever, chills, diaphoresis, weakness, anorexia and headache. Later in the course of the illness, the patient may develop jaundice. Congestive heart failure, renal failure and acute respiratory distress syndrome are the most common complications. Therapy using the combination of quinine sulfate and clindamycin was the most commonly used treatment; however, atovaquone suspension plus azithromycin was recently reported an equally effective and less toxic therapy. Exchange transfusion, together with antibabesial chemotherapy, may be necessary in critically ill patients

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

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LymeCFIDSMCS
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I have a bunch of abstracts on babesia and respiratory failure/ARDS. If anyone could get them to Bea I can email them directly to you if PM me your email address. I tried emailing to her but not sure if she got as I was having trouble getting the email through.
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a mom
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LymeeCFIDSMCS: did you email to Bea is reading email from "[email protected]". How did you pull out of the ARDS?

Hadlyme: I'll also email her your post.

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momindeep
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Trusting the Lord for the miracle and thanking Him in advance for it.
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seekhelp
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Praying for the best Bea. This is dishearterning to heat what the doctors are suggesting.

I really think Dr. K at Clongen should be working around the clock to finish this analysis given the circumstances and amount of personal outreach you've had with him. It is critical information. I hope he completes it soon. Given the seriousness, I would think he would be. If he finds something relevant that can help Steve's treatment, his lab could get lots of recognition. Most importantly of course is he could save a man's life.

All that said, it doesn't mean any mainstream doctors/hospitals believe anything Clongen says. None of my doctors ever did. [Frown]

Hoping for a huge miracle. Stay strong.

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LymeCFIDSMCS
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A Mom, Yes, I tried emailing the abstracts to that email address I think -- I'll try again though b/c I'm not sure I copied it right.

In terms of pulling out, it's exactly what I said above and what Steve is already doing: aggressive antibiotics (I actually stopped Mepron for much of that time after taking it for months, believing my babesia had cleared due to the Clongen babs species panel, which my LLMD and I didn't realize excluded babs - my Igenex test showing duncani had been before that) -- but was doing Ceftriaxone injections, Bicllin injections before that, Rifampin for bart, and I can't remember what else then), aggressive herbs, meds such as nitroglycerin, ventilator, and fighting with everything I had. It was touch and go for months, as I said.

I might have been on other meds then too (b/c I've taken a lot of diff. ones since then -- I think I might have been on Cefdinir too). I also remember getting a script for Bactrim, but due to Prolonged QT (heart rhythm disorder) I could not take a lot of the antibiotics on the "list" because they are contraindicated and dangerous w/ Long QT.

In my case I'm not sure if stopping Mepron around that time was a near-fatal mistake, or if Mepron alternately might have kicked up resistance in the b. duncani as I wasn't taking anything else to combat resistance excpet for herbs. I was, as I said above, continuing to take FOUR herbs for babs at high doses (Cryptolepsis, Artemesia Annua, Nutramedix Quina, and Elacampane), along with other antibiotics and herbs, and my turning point came when I began injecting Ceftriaxone as well as using Nitroglycerin (and had the ventilator) -- as Bea said in another post, nitric oxide (Nitroglycerin) might actually kill b. duncani directly.

I also had saline boluses (high dose rapid IV saline) for some of that time to raise my blood pressure, but could not get these for more than a brief period of time as I did not have a PICC line and it was very hard to get a visiting nurse to put in a temporary line. I took Midodrine for dropping blood pressure as well, but it didn't help.

It took months for me to pull out, and now several years later I still have a level of much greater disability I did not have before that, but I am alive. Just recently I read on an ARDS site that a lot of people do sustain serious disability even five years out (and probably longer, but one study was five years).

I do think Steve could additionally benefit from a transfusion, which I did not have. I don't know why they're not giving him one, as transfusions seem to be an important treatment in life-threatening babesiosis, but maybe one has to prove hemolytic anemia or something? Or maybe it's due to the doctors' refusal to believe in babs.

Even the CDC site mentions transfusion as a treatment (exchange transfusion):
http://www.cdc.gov/parasites/babesiosis/health_professionals/index.html

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a mom
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debilyn: YES, I htink Bea is asking for help identifying what is in the video clips.

The video clips are from April and Steve has had treatment since then, but he is so sick now and the doctors can't find anything. It seems reasonalbe to wonder what he had before, maybe the infection was not cmpeltely treated...?

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a mom
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Paul Mall had a good idea, turn the videos into youtubes and post links.

I'll ask Bea tommorrow if she wants that.

If yes, I'll ask my teenager how to do it...never had to make a youtube clip before...

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beaches
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LymeCFIDSMCS, after reading all that you've been through, I am in awe of you. What an ordeal, to put it mildly. So glad that you survived and are here and able to help Bea with this with firsthand knowledge.

I am glad that you mentioned hemolytic anemia. I just posted about that on the medical thread.

IMO, you might want to move your post above to the medical thread since it is very informative. Then again, so are several others here. I wish it all could have just stayed under one topic in one place.

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LymeCFIDSMCS
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Beaches, thanks so much for saying that. It's still really hard to talk/write about and heartwrenching to see someone else going through it.

Okay I can try to move it though I'm not sure why this thread is not on medical now since Bea mentioned wanting medical advice on here.

Can it get moved back again? I have no idea how to do that!

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seibertneurolyme
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LymeCFIDS -- Thanks so much for sharing your story.

Yes, I got your email. Sorry not to have responded. But I don't have internet access in Steve's hospital room and have limited computer time in the study room at the hospital. Haven't even managed to go into the medical library there yet.

I put our concern about babesia being the cause of Steve's respiratory problems in writing weeks ago -- the first letter I had put in the file was even before Steve had the bronchoscopy on the 19th and ended up on the ventilator. Steve saw that letter so he knows I am fighting to get him treatment.

I gave them several journal abstracts and even a copy of the CDC babesia reporting form which has a checklist of serious complications to be reported -- ARDS is on that form.

But the I.D. dept does not prescribe based on clinical diagnosis -- will not give empiric meds. Everything is "by the book" and only based on current test results.

Have now met 4 out of the 5 I.D. docs at this hospital. The one today may have been the worst yet. Have reviewed your husband's labs etc and he is stable -- good kidney and liver function and his chest xrays are stable. He is probably cured (of babesia)-- treatment works. Yea, right.

Bea Seibert

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seibertneurolyme
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a mom -- yes -- go ahead and make youtube vidoes if you want. I tried to do that back in April but I only have dial up on my computer and it was too slow and did not have enough memory for me to do that myself.

At this point I want as many people as possible to see Steve's blood slides -- I know the video clips were really eyeopening for us.

ANd yes I know how controversial it is to diagnose based on visual exams of the blood only -- but that is the best we have right now.

Bea Seibert

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a mom
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http://www.youtube.com/watch?v=u0Er_tbztXw

Can you guys see this YouTube clip? Blood Parasite

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Rumigirl
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Bea, what about a top-notch LAWYER??!! You need that pronto! And what about a transfusion? A good lawyer could pressure them to do what is necessary to save his life. Someone found a law firm in the Martinsville area on the thread in Medical.

This is really a problem that their are 2 medical threads, one on General, and one on Medica, ever since this thread was moved. It's too much for Bea and everyone to have to follow in 2 different forums.

Given what LymeCFIDS was saying, I hope that by now Dr. K at Clongen can now dx Babesia Duncanii. I presume so, or he would have said something. He's a very smart, caring guy.

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beaches
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Yes a mom, you can see it for several seconds. I have no idea how to interpret it, but hopefully someone else can.

LymeCFIDSMCS, no need to thank me at all.

As a parent of sick kids holed up in my house for years caring for them and watching them suffer to an extreme I could never have imagined, I completely understand how difficult it must be for you to talk and write about your experiences, especially when you see someone else going through the same thing.

I really think I have PTSD and wouldn't be surprised if you and many others here have the same thing. How on earth can you explain the unexplainable to people?

I was always a very strong person and I haven't had an easy life by any means. But living through the hell of seeing my children suffer every day for years has damaged me beyond what I could have ever imagined. They are doing better, thankfully, but the damage to my psyche will be there forever. As for them, hopefully they will forget the horror of it all, or at least not remember it as graphically and horribly as I do. You and I should continue this discussion in another thread or through PMs.

Back to Bea and Steve...

Bea, what the heck are they thinking that b/c his kidney/liver/xrays are good that he is CURED??

Did you happen to see what I posted re: Hemolytic Anemia? Did they test Steve's haptoglobin level? If it's low, that indicates Hemolytic Anemia, which can be caused by Babesia. Our hematologist uses Shiel Labs.

Has Steve had a consult from a hematologist??

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WPinVA
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Bea, I will continue to pray for you and Steve.

Just a thought - it sounds like Steve has some low readings in his blood work - hematacrit/hemoglobin, and perhaps more. Perhaps you could request a blood transfusion based on that (if you think a transfusion would help), and leave any mention of babesia out of it entirely since they are so hostile to the possibility of babesia.

If a transfusion is an accepted treatment for those kind of numbers, they would be hard-pressed to say no.

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beaches
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Oh and another thing Bea, since he's "cured" and his kidney/liver tests are normal, how the hell can they justify even having a conversation with you about pulling the plug????

So infuriating.

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LymeCFIDSMCS
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Bea, it is just sickening to watch -- that is, how unhelful the docs are often being despite your extraordinary efforts -- but I certainly get it. As I said, the ID doc at the hospital here literally walked into the room and started ranting/yelling at me before we had even said hello (literally! I've never seen anything like it).

I wonder if Dr. S. in Florida would look at the slides and talk to the hospital doc? He did write a book on babesia and maybe that would impact them, and he certainly seems into slides. He once looked at my bart smear from Fry (which I emailed) and declared (in our fifteen minute free consult that lasted maybe half an hour) that he saw babesia in THAT too. I do not really know him as a doc as that was my sole experience, but he did seem passionate about it.

I re-read a very old post you linked to about Steve and I saw something in there about hilar lobe adenopathy (or something like that) on an old chest film. Do you know what that was? I had that too (something about hilar lobe calcifications and maybe adenopathy? I can't remember exactly), and it makes me think it could be a place where babesia is colonizing.

Glad to know you got my email -- no need to reply. Continue to be strong -- you have so many people behind you.

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beaches
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Rumigirl: This is really a problem that there are 2 medical threads, one on General, and one on Medical, ever since this thread was moved. It's too much for Bea and everyone to have to follow in 2 different forums.

And now, there are several threads going. I agree that this is a problem and will report my reply to this post so the mods see it.

Please, is there any way to consolidate all these posts back into one? The medical info/advice is interspersed with prayers. Sometimes you just can't separate the two, especially in a dire situation like this.

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beaches
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A re-post-

Rumigirl, thanks for continuing to emphasizing the need for Bea to retain counsel.

These doctors must absolutely do what is necessary to save his life instead of even remotely suggesting that she "pull the plug." I was sickened and disgusted when I read that.

I don't have a recommendation, but I came across this site when I googled. It would be worth a phone call to see if they could help:

http://www.ggbslawfirm.com/aop/

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LymeCFIDSMCS
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Oh and Beaches, absolutely on the PTSD -- I think the unimaginable, unfathomable, unspeakable aspects of this and just the inherent trauma causes PTSD in both patients and caregivers. It must be horrible to watch your kids going through this.

(I have in been enlisting support and reading about long-term ICU-induced PTSD b/c this is bringing up so much of what I went through and it's horrible to watch anyone else going through it. But we're all going through so many things and it's kind of unreal, an unreal hidden war).

I am also slowly working through a book by a psychiatrist who leads a program for torture survivors at Harvard, called Healing Invisible Wounds: Paths to Hope and Recovery in a Violent World and it deals with many unspeakable and unimaginable events. The point that stayed with me this week is how people experiencing trauma are so deeply and profoundly humiliated -- that's what discrediting us and telling us our lives don't matter does, which makes it all the more inspirational when anyone (see: Bea who is a warrior) continues to fight that.

But back to Bea here too -- Bea, is Steve having any symptoms of shock such as hypotensive sytmptoms, etc.? I am guessing they are giving him saline. Because that also might be another angle (signs of septic shock accompanying ARDS would be grounds for aggressive antimicrobial treatment as tests are done).

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WPinVA
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here is the link for Blue Ridge Legal Services intake:

http://www.lawhelp.org/Program/1583/RTF1.cfm?pagename=Roanoke%20Office

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LymeCFIDSMCS
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I don't know a lot about interpreting blood smears but it seems like a couple of the cells (like middle about two-thirds up) have a cross pattern on them and I'm wondering if that could actually be a maltese cross? (sorry if I'm way off here).

See maltrese cross for babesia duncani in Figure 1 of this article:
http://www.sciencedirect.com/science/article/pii/S0020751906001111

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beaches
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LymeCFIDSMCS, your words describe what I feel: unimaginable, unfathomable, unspeakable. Let's start a new thread on PTSD using those words.

To repeat, Bea, is Steve having any symptoms of shock such as hypotensive sytmptoms, etc.? I am guessing they are giving him saline. Because that also might be another angle (signs of septic shock accompanying ARDS would be grounds for aggressive antimicrobial treatment as tests are done).

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WPinVA
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Bea, also just in case you didn't see it, this post is going in two places - here and in Medical Questions so be sure to check both!
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Rumigirl
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I did some sleuthing for you on lawyers in Roanoke who do Medical law. I also sent this info in an email to you at your yahoo email.

Here is a link to Avvo ratings:
web page Roanoke lawyers

For some reason, the url doesn't take you to the right page, even though I cut and pasted. It should work better in the email I sent you.

The first 3 look the best, and Dan Firth looks the best for this situation. Of course, you would need to speak with them, etc.

I doubt that this would be a contingency case, but if it were, don't agree to more than 33%! But I doubt that it would qualify for contingency.

Please, please get a lawyer's help pronto!! You really need it to force these blasted drs to do the right things!!

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beaches
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Bea, at this point, agree to anything that a reasonably-minded attorney proposes to you.

We'll all help you figure out how to pay for it.

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baileypup
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Bea, we want to help, so please let us know if you want to hire a lawyer so that we can contribute and help defray the cost.

Do you have someone who could call lawyers for you and determine who might best represent you? I am more than willing to help, so please just ask, and we can call around and do the foot work for you. The firm WPinVA listed might take your case pro bono.

WPinVA makes a good point; maybe request a blood transfusion based on blood tests and not mention babesia, due to their extreme hostility.

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LymeCFIDSMCS
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Okay I just read the thing above about Steve's hemocrit being 25.5 and his hemoglobin being 8.

I think this article could be a helpful justifications for a transfusion:
http://www.uptodate.com/contents/indications-for-red-cell-transfusion-in-the-adult

"For many decades, the decision to transfuse red blood cells was based upon the "10/30 rule": transfusion was indicated in all patients in order to maintain a blood hemoglobin concentration above 10 g/dL (100 g/L) and a hematocrit above 30 percent [1].

However, concern regarding transmission of blood-borne pathogens and efforts at cost containment caused a reexamination of transfusion practices in the 1980s.

The 1988 National Institutes of Health Consensus Conference on Perioperative Red Blood Cell Transfusions suggested that no single criterion should be used as an indication for red cell component therapy and that multiple factors related to the patient's clinical status and oxygen delivery needs should be considered [2].

Accordingly, the decision to transfuse erythrocytes must be based upon an assessment of the risks of anemia versus the risks of transfusion [2-4]."

---

I don't know if one can cite the 10/30 rule now, but Steve is obviously under those numbers!! However, from an additional search it looks like there is a lot of debate about the 10/30 rule. Yet for *babesia* the indications for a transfusion would seem to override transfusion concerns.

Maybe the 10/30 precedent could be used to just justify that a transfusion is indicated based on blood tests, without mentioning babesia again.

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a mom
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Bea, Everyone: this link should take you to a playlist of 27 clips. Can you see them all?

Can you identify what is in the blood?

http://www.youtube.com/watch?v=u0Er_tbztXw

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seibertneurolyme
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As we all know transfusions have risks as well as benefits. I do think I will ask for a consultation with a hematologist today. Finally got them to test his LDH and it is over 400 -- above 180 is high.

Blood tranfusion and blood exchange (plasmapheresis) are 2 totally different procedures.

Have not consulted an attorney. Still undecided on that route. Will see what comes of the TV interview first.

As I said before the hospital docs are all Steve has -- he cannot even be moved into another hospital room due to his oxygen requirements. Cannot do a CT scan for example to rule out a pulmonary embolism.

The hospital is aware that I have contacted Columbia Presbyterian and made arrangements for Steve's organs etc to be donated to the Speciman Bank for tickborne disease research if he does not survive this ordeal.

The final outcome is in God's hands, but that doesn't mean I am giving up or not doing all I can to help Steve. I just have to trust that I will be lead to make the correct decisions.

Bea Seibert

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feelfit
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Bea- I cannot help with identifying blood pathogens, but I wouuld be willing to help in any other way..phone calls, etc.. Just say the word.

LymeCFIDSMSC- your experience can be so helpful to Bea. You're very courageous to relive this horror in order to help.

I do believe and continue to believe that Steve can pull through this. You're amazing, Bea.

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a mom
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HEY!! Thanks to Paul Mall! told me to use YouTube to get vidoes on line! Thanks! Is Paul Mall a teenager? [Smile] ?
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poppy
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I think a letter from an attorney should not cost all that much to get. You are not retaining them for malpractice or anything else at this point.
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poppy
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Looked at the youtube videos and think most of us here are not qualified to do any sort of ID on what might be on these images. The old FL lab that did microscope work on slides looked at hundreds of fields, taking a couple of hours if necessary. A stain was involved I think. So these few videos would not really constitute an adequate search, even if we could figure out what we were looking at.
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momindeep
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Paul Mall isn't a teenager...but a tireless advocate at the legislative level for those stricken with Lyme.
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Dekrator48
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Offered prayers at church this morning during communion that Steve's suffering and healing would glorify God.

--------------------
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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Lymetoo
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Same here. Bea and Steve are on our church's prayer list.

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

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NEMOM
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also added them to our Church's prayers list...
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a mom
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Bea, my old boss also put you and Steve on his church's prayer list!
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