Topic: URGENT: Update from Bea about Steve:NEEDS PRAYERS 10/6
WPinVA
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posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
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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.
Posts: 1885 | From here | Registered: Jul 2012
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posted
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.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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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:
posted
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).
Posts: 929 | From Massachusetts | Registered: Oct 2007
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WPinVA
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posted
here is the link for Blue Ridge Legal Services intake:
posted
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).
beaches
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posted
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).
Posts: 1885 | From here | Registered: Jul 2012
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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!
Posts: 1737 | From Virginia | Registered: Aug 2011
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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.
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!!
Posts: 3792 | From around | Registered: Mar 2008
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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.
Posts: 1885 | From here | Registered: Jul 2012
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posted
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.
Posts: 964 | From san diego | Registered: Oct 2009
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"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.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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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.
Posts: 3975 | From usa | Registered: Aug 2007
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posted
HEY!! Thanks to Paul Mall! told me to use YouTube to get vidoes on line! Thanks! Is Paul Mall a teenager? ?
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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.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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Here's Dr. S's babesia hemotology book online -- lots of pics of slides showing babesia, for anyone wanting to sift through slides and look at the slides from Steve! http://www.personalconsult.com/free/BabesiaLabGuide.pdfPosts: 929 | From Massachusetts | Registered: Oct 2007
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map1131
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This day & age all the news is acts of violence, acts of stupidity, all very depressing.
I wish we could see more of the good and great things people are doing out there in the world.
What a great story Bea. When you have little angels traveling from Ohio to brighten your day.....you know there is love in your world.
Peace be with you and Steve.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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beaches
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posted
up
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BoxerMom
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Sweet video. I loved when Bea said, "The doctors need to be led. They can't do it on their own."
Led by a higher intelligence, as was implied, but also led by her!!
Bea is a force of nature.
And Anna is a very smart little girl. So confident. I found her words calming and comforting.
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 -
[ 10-08-2012, 07:11 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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momindeep
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Today is a new day of opportunity.
Asking the Lord to reveal His glory in an undisputable way. Asking the Lord that Bea's mind and body have new confidence and vigor today and that she won't become weary.
Praising the Lord for who He is...the Great Physician and our loving Father.
May the Lord get ALL the glory and give Bea the peace that passes all understanding.
Amen
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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When I realized I had chronic lyme 6 years ago, I found Lymenet and Bea responded to my need for help. What I remember is that some of symptoms were very similar to her husband�s. She gave me a short list of what to start with as I waited for my first appointment with an LLMD. I appreciate her very much. I am stable now and am happy with my life.
I appreciate Bea very much and I also have prayers for Steve. There is probably nothing I can write now to directly help Steve. I will write a little about my history and what I think helped me.
In addition to many other problems, I was told I had lyme all through my lungs. I was later diagnosed with severe sleep apnea and had a C pap machine with positive pressure. I was told that it was not safe for me to drive if I did not use it at night.
Long term antibiotics helped with most symptoms, but not with the sleep problems. With the low level of oxygen in my blood at times, my blood pressure would shoot up.
I now spend most of my time high in the Andes and after much treatment and alternating my time between the Andes and the costal area, I no longer need the C pap machine.
After the extensive antibiotics, I think it helped to be out of the US (healthier food, no chemtrails, treatment options not available and/or legal in the US). Treatments included lazer therapy, hyperbaric oxygen, ozone treatments, stem cell therapy and detox. I also lost over 70 pounds of weight which obviously helped my breathing at night.
Bea helped turn my life around and she deserves much help now. My prayers are with you Bea.
-------------------- 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
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