posted
The pulmonary doctor has informed me that they expect Steve's heart to give out and for him to not live through the night.
The I.D. doc ordered one more blood slide. It is my understanding that if the slide is negative for babesia she will not empirically treat him with malaria meds.
Spoke to the patient advocates and they were trying to get I.D. docs at another hospital to review Steve's file. Like that is going to happen on a Friday afternoon.
Have one more meeting later today with the ethics committee.
My sister is coming to sit with me and should be here in 3 or 4 hours.
Even if Steve gets mslaria meds for his babesia it will probably be too little too late unless a miracle happens.
Have spoken to the Columbia Speciman Bank and they will take his brain and organs and tissues to test for evidence of tickborne infections.
Fever of 103.2 and WBC at 30,000 but they aren't willing to do anything outside of the box.
Signing off for now.
Bea Seibert
---------------------------------------- UPDATE
Since I last posted the cardiac and lung docs pulled out all the stops. Pulmonary docs have paralyzed Steve with an IV med to improve his oxygenation. Says they do this for other patients with high oxygen needs. The cardiac docs gave him an IV med to temporarily stop his heart and got him back into a normal rhythm. So for now they are saying he still could possibly survive. Remains in critical condition.
Blood gases did improve and heart rate has gone down from 175 to 110 or so -- still fluctuates a lot.
One bright spot is that his lung xray this afternoon shows slight improvement in one lung.
None of my meetings have accomplished much other than they did switch back to zosyn from rocephin as I requested. His WBC seemed like it was responding to the zosyn before they switched it.
On a cooling blanket his temp has gone back down to 101.
So now it is a wait and see game -- I still may have to make some really tough decisions in the near future.
Prayers are about all that will help now in my opinion.
Bea Seibert
------------------------------------------------- Update Saturday, September 29
Mostly better news today. Steve has not had a fever today and his WBC is down to 22,000. First day in 4 or 5 days he has not run a fever. Chest x-rays about the same I think.
He started the day with his heart going in and out of a-fib but sometime this morning it converted over to normal sinus rhythm at around 71. Pulse ox is also doing better this afternoon -- went up from 85 to around 90.
The cardiology dept has signed off and will not be following Steve unless he has more heart issues. The heart and lungs are obviously interconnected and they feel like the real issue is the lung problem. Fluid on the lungs can trigger heart issues and apparently being on a ventilator also impacts the heart.
Doctors are not saying much except they have definitely decided that Steve has ARDS -- acute respiratory distress syndrome. But of course the bigger question is what caused the original pneumonia that triggered the respiratory failure.
I.D. docs did not even come by to see Steve today and it is my understanding that they may not see him again before Monday. Overall the docs are just waiting to see what happens. Pulmonary and the hospitalist did check in.
I am still waiting for confirmation that the Babesia PCR test that was negative was actually for Babesia Duncani. Honestly it wouldn't surprise me too much if they ordered either a Babesia Microtti PCR or a Babesia species PCR which are not the same. The preliminary results on Steve's 2nd malaria blood slide done by the hospital lab are negative.
I am just trying to get rested up a little and then need to have a new plan for Monday.
Thanks so much for all the prayers. And if anyone wants to help financially it will be appreciated, but do not feel under any obligation to help. My dad sold some cattle and sent me some money and my older brother sent some money as well.
Prayers and cards are what is needed the most right now.
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Dear God,
Please put a hedge around Steve and protect him. Give his body the strength he needs to make it through. Please give Bea comfort. Give the Dr's the compassion and knowledge to do whatever it is that Steve's body needs.
We ask you to surround Bea and Steve with your love, comfort, strength and PEACE. If it be your will, Lord, heal Steve and restore him to perfect health.
Amen
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Bea we are all with you and Steve. You have offered so much to so many here. My prayers are with both of you.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Bea & Steve,
Prayers out there. And . . . deep feelings, too:
Love to you both.
Light. Love. And Hope - that, no matter what - love and light from every level of all creation will encircle you both, every moment. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
tears also in my eyes, and saying a prayer for steve right now, im so sorry,
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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merrygirl
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posted
praying hard.......This is awful
Posts: 3905 | From USA | Registered: May 2007
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posted
Sending prayers of hope and healing, light and love.
Posts: 873 | From WA | Registered: Dec 2005
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merrygirl
Frequent Contributor (1K+ posts)
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posted
I cant understand why they dont throw the wholekitchen sink at him. This is a mans life. Bust out the lawyer talk
Posts: 3905 | From USA | Registered: May 2007
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tickled1
Frequent Contributor (1K+ posts)
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posted
How can they refuse to try anything else?!!! My heart is breaking for you. You have fought too long and hard for him for them to not do anything else. I am numb. I'm praying for a miracle! God bless Bea and Steve and please don't let their suffering be for nothing. Please reward their efforts and devotion to each other.
Posts: 2541 | From Northeast | Registered: Jan 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
I agree with merrygirl...it's ok for them to KNOW he will die if they do nothing...but if they give them some Babesia meds, more antibiotics and take away the %8#@ steroids...he might die OR he just might pull through.
Steve and Bea's story is all of our story. Once you're in the hospital, it doesn't matter if you have the best LLMD on the planet, you are at the mercy of the ID Dr's.
I do not know you Bea, but I know how it is to fight and fight and fight for a sick husband. I am crying for you guys right now.
posted
On my knees now and will continue to be, offering up urgent and fervent prayers for Steve, Bea. We are here for you.
Posts: 503 | From Maryland | Registered: Oct 2007
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merrygirl
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Member # 12041
posted
I havent been on in awhile, and ?I saw this first. I am m ad as hell and disgusted and about to drive down there with my mepron, and my lawyer
Posts: 3905 | From USA | Registered: May 2007
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merrygirl
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posted
can anyone get a hold of a prominent llmd? and tell them what is happening. maybe just maybe?
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- merrygirl,
From previous thread from Bea, on same hospital stay, here's the gist of what I think she says (not a direct quote, though):
They have a LLMD on the phone line but hospital insists that CURRENT tests MUST be positive to treat. They also seem not to believe in chronic infections of any kind.
They have to have proof positive, for this point in time. And we all know that tests have limits, especially with the labs they use. But Bea has gone to outside labs and awaits some word. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Prayers said and will continue throughout the night.
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merrygirl
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posted
Thank you keebler. I skimmed through the other threads but I know Bea will always go above and beyond. Its so upsetting
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Haley
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posted
Dear God,
Give Steve and Bea peace in the midst of this trying time. You hold all of our tears in a bottle. You will never leave us or forsake us.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
Bea, I am so angry and can only imagine how you must feel. I hope you are raising holy hell and I hope you take them to task for allowing your dear husband to get sicker by the day, as they withhold potential life saving drugs.
Please Dear Lord, we pray for a miracle, that Steve's body be healed and that his heart is strong. We ask that in your name. Amen
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Another thought, I was under the impression that all (or most) of the "mill" labs across the US, including hospital labs, didn't do complete antibody testing for Babesia.
I'm under the impression that the only Babesia testing they do is to look for IGG. Will this current ID doc be requesting both IGG and IGM for the Babesia?
If my understanding is correct, I don't know how ANY doctor could accurately rule out an active babesia infection if they aren't even LOOKING and TESTING for one via complete IGG and IGM testing.
And we all know that even with the best of the private tick borne pathogen labs -- the ones who DO try to look for Babesia via IGG/IGM as well as other methods -- there is difficulty in accurately pulling a positive result, no matter how ill the patient is.
It is the doctor's responsibility to know and understand the limitations of ALL of the testing that they rely upon. It is the doctor's responsibility to treat empirically when necessary -- especially in the face of a life threatening situation.
Posts: 503 | From Maryland | Registered: Oct 2007
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lymemomtooo
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Oh Bea, I am so sorry. I was sent some info on you and then just sent Toots a message to find out your handle on here. I could not remember. I will keep you and your husband and family in my prayers. May God watch over you and keep you in his care. lmt
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lymednva
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posted
I am so sad for you both right now. I have to agree with Fuzzy that it is the doctors' responsibility to treat empirically when necessary, especially at this point.
Prayers said for you both and for the docs to open their minds and find a way to successfully treat him.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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Jane2904
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posted
praying and hoping.
Lord hear our prayers.
Hugs to both of you.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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posted
Praying for you Bea and Steve. Sending light and love your way. We all connect with you in your very virtuous fight and our collective strength is being channeled to you, who need it most.
Love to you.
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"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
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posted
I'm so sorry to hear this is happening. It breaks my heart to read. I pray a miracle will happen for you and Steve who so deserve it.
Posts: 618 | From NC | Registered: Oct 2009
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posted
Keebler or anyone else, Does anyone know details on the hospital? Can we look up to see if the infectious disease doc there is an IDSA schmuck duck?
I dealt with one of those in the hospital when I was admitted, and it was very scary (I had more than one doc call in too).
Bea and Steve you've been in my thoughts and prayers all evening.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Silverwolf
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Member # 9196
posted
Hi there <<<<< Steve and Bea >>>>>,
Praying for a miracle for Steve,and the healing power of Gods love and peace for both of you!!
Lord, we ask for your healing power,and love for Steve and Bea,and for your ministering Angels to surround them. In Jesus Name Amen
Jus' Silverwolfi and TxCoord
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
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posted
praying for you and your family
Posts: 908 | From Albany | Registered: Nov 2008
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beaches
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Member # 38251
posted
I am asking for Catholics here to say prayers to St. Rita and St. Jude on Stephen Siebert's behalf.
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lyme in Putnam
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posted
Thinking of you and praying for healing and peace.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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posted
Praying for a miracle for you both. Lord please fill and surround Bea & Steve with Your love and healing power.
-------------------- Ecclesiastes 4:9-10 Two people are better off than one, for they can help each other succeed. If one person falls, the other can reach out and help. Posts: 338 | From NEPA | Registered: Mar 2011
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randibear
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posted
Oh bea I am so sorry. You both have fought long and hard. I know the Lord hears all of our prayers. I will be thinking and praying for both of you
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Praying for Steve, Bea, and wisdom for the doctors.
Posts: 177 | From Ohio | Registered: Aug 2012
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beaches
Frequent Contributor (1K+ posts)
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posted
I am also asking for Catholics here to pray to St. Raphael, Archangel the Saint of Illness whose feast day is tomorrow, September 29th.
And let us Catholics please pray to St. Joseph as well, just because.
St. Rita, St. Jude, St. Raphael, St. Joseph:
I say my prayers to you today and I very humbly request your intercession so that God will grant a healing miracle to Stephen Siebert and relief to his wife, Bea.
In the name of the Father, the Son, and the Holy Spirit, Amen.
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beths
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posted
Sending prayers
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