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: 96222 | 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
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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
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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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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?
Posts: 3905 | From USA | Registered: May 2007
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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.
Posts: 131 | From Nebraska | Registered: Apr 2011
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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
Posts: 3905 | From USA | Registered: May 2007
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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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posted
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
Posts: 2360 | From SE PA | Registered: Mar 2004
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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.
Posts: 274 | From United States | Registered: Feb 2012
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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: 96222 | From Texas | Registered: Feb 2001
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Silverwolf
Frequent Contributor (1K+ posts)
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.
Posts: 1885 | From here | Registered: Jul 2012
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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
Honored Contributor (10K+ posts)
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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.
Posts: 1885 | From here | Registered: Jul 2012
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beths
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posted
Sending prayers
Posts: 1276 | From maryland | Registered: Jan 2009
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beaches
Frequent Contributor (1K+ posts)
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posted
UP
Posts: 1885 | From here | Registered: Jul 2012
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Andie333
Frequent Contributor (1K+ posts)
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posted
Bea, you and Steve have fought so hard and so bravely. I was really sorry to read your last update.
Hopefuly someone, somewhere will come to their senses and be willing to do whatever is needed.
And in the meantime, I, like so many others, will pray for you both.
Just know we're all here supporting you and praying for you.
Posts: 2549 | From never never land | Registered: May 2005
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sparkle7
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posted
All the best to you and Steve. My prayers are with you.
Peace.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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linky123
Frequent Contributor (1K+ posts)
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posted
You are in our thoughts and prayers. Love to you both.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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beaches
Frequent Contributor (1K+ posts)
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posted
I continue to pray to St. Raphael, Archangel of the Saint of Illness whose feast day is tomorrow, September 29th.
I also continue to pray on Stephen Siebert's behalf that he be healed by the grace of St. Raphael as well as St. Rita, St. Jude and 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.
Posts: 1885 | From here | Registered: Jul 2012
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Nancy2
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posted
Praying with all my might!
Posts: 1487 | From New England | Registered: Oct 2000
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
St. Raphael, today, September 29th is your feast day for us Catholics.
I humbly submit before you my sister Bea Siebert and her beloved husband Stephen Siebert.
Posts: 1885 | From here | Registered: Jul 2012
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In quietness and confidence shall be your strength ~
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dbpei
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posted
Oh Bea, I am so sorry. My heart goes out to you. I am praying for a miracle that Steve will get the treatment he needs to turn around. This illness is such a nightmare. May God bless you and give you the courage you need right now to get through this horribly difficult time. You have been Steve's guardian angel through all of this. Hugs and prayers sent your way...
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RZR
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posted
My heart breaks as I read this. I am so very sorry.
I have been praying for days and will continue to do so. May God wrap his healing arms around Steve and give you comfort and courage.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Dekrator48
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posted
Dearest Bea,
I am praying so very fervently for Steve, you and the medical team.
My heart is breaking for you. May you feel God's peace, love and comfort during this very difficult time.
Lord Jesus,
You are the God of all hope, healing and miracles.
You are the only One we can rely on for help.
I praise your holy name and ask You, dear Lord, to heal our brother, Stephen.
Please send the power of the Holy Spirit down and shine on precious Stephen's body.
Please lift him up out of the pit and breathe new life into Stephen's lungs.
Lord, please give Bea and Stephen comfort and peace like they have never felt before.
Let Bea and Steve know how much they are loved by You and all of us.
Lord, please open the minds, eyes and hearts of all of the medical team. Give them the wisdom and compassion that they are lacking.
I ask all of 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 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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posted
Lord, send Bea and Steve the miracle of miracles. Blessings and Prayers.
Posts: 620 | From Ks | Registered: Oct 2011
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Sammi
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posted
It is so upsetting the doctors will not give him the Babs meds he needs. It truly is unethical.
Bea, I am still praying hard for you both.
Posts: 4681 | Registered: Oct 2000
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poppy
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posted
Any chance of having a blood slide looked at visually, some university lab? This is the way malaria can be diagnosed. Not done much in this country anymore because the automated testing has taken over. That was the way my babesia was diagnosed by the old FL lab, after a negative antibody test elsewhere.
Maybe you could arrange for this to be done, and use it as bargaining tool, or potential threat.
Posts: 2888 | From USA | Registered: Mar 2004
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posted
You and Steve are in my thoughts and prayers, praying for a miracle.
Posts: 323 | From Michigan | Registered: Sep 2006
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Tammy N.
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posted
Dear Bea, Crying as I'm reading this. Words fail at times like these. So sad for you and your husband's struggles. I pray for a miraculous healing. May God be close to you both at this most challenging time. With warmth and love, Tammy
Posts: 2238 | From East Coast | Registered: Jul 2010
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So, after spending the evening crying, feeling hopeless frrantic panic and cursing out IDSA and thinking the lot belongs in jail....
this morning had this thought:
Does anyone know the hotel Bea is staying in?
What if each person calls the hotel to pay a few dollars against her account?
At least that might be some support in this impossible time...?
What do you guys think?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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feelfit
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Member # 12770
posted
hugs, bea. strength, fortitude, love...peace. In my thoughts and prayers. I'm glad that your sister has come to be with you.
Posts: 3975 | From usa | Registered: Aug 2007
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map1131
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Member # 2022
posted
What a family of support from all of us who know this madness of lyme & co. I think reality has hit many of us, just how alone we really are when it comes to the "medical knowledge" outside of the LLMD world.
I'm stunned by all of this. I'm hurt and mad.
But most of all....I wish Bea peace with all she's been thru. Lord, hold her tight.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
GUYS! I know the hotel Bea is staying at. If you want to help her, email me at [email protected] and I'll can give you the hotel info.
In retrospect, it might save work and confusion to just send Bea a check for an amount.
I just spent about 30 minutes tyring to work out soemting with the hotel staff. The Manager isn't at her post until Monday. The clerk is a very sweet young lady, but it feels likely that something will go wrong...sigh.....
We're Thinking about you Bea and Steve!!!
Hang in there!!
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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I "paid" for the first 3 nights. It's not "charged to my card" until Bea "checks out".
Her sister should put the room on her card for the next 2 nights.
Then the next person can reserve the room on their card for the next night or two.
Then the next person can reserve the room on their card for the next night...and so on....
Each night is $35 (hospital rate) BEFORE taxes and fees.
The problem with this is that each day Bea will need to check out and back in so the cards can be charged and changed over.
The room would be reserved over a series of nights under different names/credit cards.
It's alot of logistics and making sure your card is charged correctly.
Bea is keeping it together, but she was crying this morning. I cannot imagine what she is going through. She is one tough cookie.
It might be be easier and save hotel confusion to just send Bea a check to help cover costs. then let her know what you did.
Any thoughts?
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
I agree it would be much easier to send Bea a donation at her home address.
It sounds too confusing the other way and I agree it will likely get messed up.
-------------------- 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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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Just thought about mail: probably best to not send a donation to her home if she is not home to collect her mail, though.
Is there anyone who knows if she had a trusted neighbor doing that? Or if she has a USPS hold on her mail?
She may have left too quickly to make arrangements.
Last year I was able to use my card at a hotel where my aunt was staying for an ill relative. That worked out very well as all my siblings also called and they just issued a credit for her room against our various cards.
Always best when the manager (or person doing that) sounds very adept, however.
DIRECTLY to her BANK?
If someone knows her bank, her branch and (? maybe her street and town ?) . . . donations can be handled through her bank.
Anyone can deposit funds into anyone's bank account - they need not have the account number (nor should it be floating about).
But, again, a manager who is very adept is best to handle that.
PAYPAL would also be an excellent method if she has a PayPal account. That goes right to the bank account - but a private email address is needed to make the transfer. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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