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.
Bea Seibert
[ 10-01-2012, 11:04 PM: Message edited by: seibertneurolyme ]
Posted by lax mom (Member # 38743) on :
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.
I claim it in the name of Jesus. Amen
Posted by soccermama (Member # 35101) on :
Father, you are a God who thinks outside the box. You sent Your son to die for our healing. That is outside of the box thinking.
In Jesus name, manifest the healing that You have given to Steve. Restore his body to full health.
Give Bea that miracle!!!!
Posted by Lymetoo (Member # 743) on :
Lord Jesus,
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
Posted by LymeCFIDSMCS (Member # 13573) on :
Bea we are all with you and Steve. You have offered so much to so many here. My prayers are with both of you.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by debilyn (Member # 35753) on :
Dear Lord
Please hold Steve in the palm of your hand and heal him; you are the great Physician, Father.
In Jesus name, bring a healing to his body and comfort Bea.
Posted by surprise (Member # 34987) on :
Tears in my eyes for you and the prayers here.
God bless, sending cyber support--
Posted by BoxerMom (Member # 25251) on :
Much love and light to you both.
Posted by derk diggler (Member # 31903) on :
tears also in my eyes, and saying a prayer for steve right now, im so sorry,
Posted by merrygirl (Member # 12041) on :
praying hard.......This is awful
Posted by hopeful4 (Member # 8486) on :
Sending prayers of hope and healing, light and love.
Posted by merrygirl (Member # 12041) on :
I cant understand why they dont throw the wholekitchen sink at him. This is a mans life. Bust out the lawyer talk
Posted by tickled1 (Member # 14257) on :
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.
Posted by lax mom (Member # 38743) on :
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 by FuzzySlippers (Member # 13658) on :
On my knees now and will continue to be, offering up urgent and fervent prayers for Steve, Bea. We are here for you.
Posted by merrygirl (Member # 12041) on :
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
Posted by merrygirl (Member # 12041) on :
can anyone get a hold of a prominent llmd? and tell them what is happening. maybe just maybe?
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by NEMOM (Member # 31370) on :
Prayers said and will continue throughout the night.
Posted by merrygirl (Member # 12041) on :
Thank you keebler. I skimmed through the other threads but I know Bea will always go above and beyond. Its so upsetting
Posted by Haley (Member # 22008) on :
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.
Posted by a mom (Member # 23920) on :
PLEASE GOD HELP STEVE AND BEA, THEY ARE GOOD PEOPLE.
Posted by baileypup (Member # 22824) on :
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
Posted by birdie67 (Member # 35994) on :
Praying and praying and praying!!!
Please dear Lord, bless this wonderful man with your healing and strength.
Sending you love, Bea.
Posted by chootik (Member # 11221) on :
This is un-believable! How can they do this to a human being! And they call themselves Doctors!
Hope he pulls through! Praying for you guys.
Posted by Marz (Member # 3446) on :
You both are very much in my thoughts and prayers.
Posted by Carol in PA (Member # 5338) on :
I am praying for Steve and for you.
Posted by LymeGoAway (Member # 25041) on :
You and Steve are in my prayers.
Posted by FuzzySlippers (Member # 13658) on :
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.
Posted by lymemomtooo (Member # 5396) on :
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
Posted by lymednva (Member # 9098) on :
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.
Posted by Jane2904 (Member # 15917) on :
praying and hoping.
Lord hear our prayers.
Hugs to both of you.
Posted by YinYang (Member # 36358) on :
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.
Posted by Life+Lyme (Member # 33568) on :
Praying for healing and encouragement for you and Steve. I'm so sorry you guys are going through this.
Posted by gatorade girl (Member # 24896) on :
Praying
Posted by jwall (Member # 22999) on :
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.
Posted by LymeCFIDSMCS (Member # 13573) on :
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.
Posted by Lymetoo (Member # 743) on :
Attn: Stephen Seibert Carilion Clinic P.O. Box 13367 Roanoke, VA 24033
I don't know what this means, but seems to mean there's an IDSA presence there.
Posted by TerryK (Member # 8552) on :
Unbelievable!! If they *think* he is going to die anyway then what is the harm if they treat him?
You and Steve have put up such a long, brave fight. The doctors have been wrong before and I will not believe them now. Don't give up Steve and Bea!
Love and prayers to you.
Terry
Posted by jlcd1 (Member # 18138) on :
praying for you and your family
Posted by beaches (Member # 38251) on :
I am asking for Catholics here to say prayers to St. Rita and St. Jude on Stephen Siebert's behalf.
Posted by lyme in Putnam (Member # 11561) on :
Thinking of you and praying for healing and peace.
Posted by DKat (Member # 30941) on :
Praying for a miracle for you both. Lord please fill and surround Bea & Steve with Your love and healing power.
Posted by randibear (Member # 11290) on :
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
Posted by PatriotM (Member # 38493) on :
Praying for Steve, Bea, and wisdom for the doctors.
Posted by beaches (Member # 38251) on :
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.
Posted by beths (Member # 18864) on :
Sending prayers
Posted by beaches (Member # 38251) on :
UP
Posted by Andie333 (Member # 7370) on :
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.
Posted by sparkle7 (Member # 10397) on :
All the best to you and Steve. My prayers are with you.
Peace.
Posted by linky123 (Member # 19974) on :
You are in our thoughts and prayers. Love to you both. Posted by beaches (Member # 38251) on :
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.
Posted by Nancy2 (Member # 95) on :
Praying with all my might!
Posted by beaches (Member # 38251) on :
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.
Posted by birdie67 (Member # 35994) on :
Thinking of you both and praying constantly.
Please Lord hear our prayers.
Posted by riverspirit (Member # 19435) on :
With you in the Silence and the Peace ~
In quietness and confidence shall be your strength ~
Posted by dbpei (Member # 33574) on :
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...
Posted by RZR (Member # 20953) on :
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.
Posted by Dekrator48 (Member # 18239) on :
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
Posted by cozynana (Member # 34270) on :
Lord, send Bea and Steve the miracle of miracles. Blessings and Prayers.
Posted by Sammi (Member # 110) on :
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.
Posted by poppy (Member # 5355) on :
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.
Posted by Marcie (Member # 10070) on :
You and Steve are in my thoughts and prayers, praying for a miracle.
Posted by Tammy N. (Member # 26835) on :
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
Posted by a mom (Member # 23920) on :
Hey Guys:
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?
Posted by feelfit (Member # 12770) on :
hugs, bea. strength, fortitude, love...peace. In my thoughts and prayers. I'm glad that your sister has come to be with you.
Posted by map1131 (Member # 2022) on :
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
Posted by LymeMom Kellye (Member # 24807) on :
I would love to help with the hotel.
Posted by a mom (Member # 23920) on :
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!!
Posted by a mom (Member # 23920) on :
To let you guys know what I did:
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?
Posted by Dekrator48 (Member # 18239) on :
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.
Posted by Keebler (Member # 12673) on :
- 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. -
Posted by Dekrator48 (Member # 18239) on :
I think we should post this question to Bea, who will be reading this.
What would be best for us to do to help you, Bea?
Posted by a mom (Member # 23920) on :
Does anybody have Bea's home mailing address?
Posted by a mom (Member # 23920) on :
Dekrator48 - good idea! I called Bea, but I didn't ask the question. I just offered.
Posted by LymeCFIDSMCS (Member # 13573) on :
If Bea and Steve have a Paypal account, it is really easy to set up a paying system through ChipIn (http://www.chipin.com/) which uses Paypal.
It's easier for those donating as they don't have to go through the process of figuring out how to do Paypal to someone directly, and yet it's *clear* where the funds go to (you'll see Bea's Paypal address when donating, and it will go right there).
Just a thought to simplify, not further complicate -- but if it feels too much like the latter, never mind : )
Posted by Lymetoo (Member # 743) on :
Or could money be sent to her sister's address?? (I'm thinking her sister has a husband who is at home there??)
Posted by Pocono Lyme (Member # 5939) on :
Maybe prepaid Visa sent to the hospital address provided? She could use it however it's needed?
I will help. Lord if ever we've needed You we need You now. Please heal our brother Steve and let both of them know You are with them. I pray in Jesus' name. Amen.
Posted by a mom (Member # 23920) on :
Keebler, great ideas!! Hope Bea logs in soon. any one have update? I called to much this morning, afriad to call more today.
Posted by a mom (Member # 23920) on :
Keebler, great ideas! anyone hear from Bea? i called to much this am, afraid to do more today.
Posted by MichaelTampa (Member # 24868) on :
So sad they are unwilling to try with some things, the way the tests work. I'm so sorry for both of you, praying - wishing - hoping for the best for you both, always!
Posted by a mom (Member # 23920) on :
Dr. W of WI is a founding member of IDSA. He wrote a book about 51 cases of chronic lyme disease from his practice. Does anyone know him? Can he help Steve and Bea???
Since he is a founding memeber,IDSA, maybe the other doctors will listen to him...??
Anybody know him??
**edited name of LLMD**
[ 09-29-2012, 04:41 PM: Message edited by: Lymetoo ]
Posted by a mom (Member # 23920) on :
Guys!!
I just talked to Bea. Steve is still hanging in there!!! Hang in there Steve!!
She has a paypal account if you want to contribute to help:
I haven't looked at it, so I don't know how it works or if it's working right now.
Bea did not want to bother anyone and so did not say anything. But I took Dekrators' advice and jsut asked. LymeCFID , thanks for bringing up paypal. I had no idea!!
Posted by tickled1 (Member # 14257) on :
Hang in there Steve and prove them all wrong and teach them a thing or two in the process!!! Been holding my breath all day....
Posted by Keebler (Member # 12673) on :
- Great news about Steve. Hope he feels better and better. Good light and energy to Bea, too.
I can only send good thoughts and hope there is the best nutrition on hand for Bea there. Were I to live near there, I'd be bringing down some good carrot & ginger juice, Hummus and Baba Ghanouj.
I'd also order a string quartet. Virtual ambiance.
Massage therapy for patients and visitors.
I could be the concierge extraordinaire for medical centers. I know everyone would get better quicker were I to be in charge, eh?
In no way to pressure anyone, yet for those who may be in the position to help, it's a little hard to find, so:
PayPal's direct link for sending a gift -
Posted by LymeCFIDSMCS (Member # 13573) on :
Go Steve! Keep fighting!!! We are all behind you two and praying and sending hugs and love. Thanks for the Paypal Info.
Posted by Lymetoo (Member # 743) on :
Bea and Steve... still praying!!
Keebler .. I'll call you for the concierge next time I'm in the hospital. Boy, do they serve &%$#!!!
Posted by Jane2904 (Member # 15917) on :
Hang in there Steve!!!
HUgs to both of you.
Posted by Dekrator48 (Member # 18239) on :
Thanks for the paypal info Keebler.
Bea, I hope you can feel our Lord lifting you and Steve up. We are all right there beside you, praying, and cheering you on in this fight.
Love and hugs!!!
Posted by gagamooppop (Member # 34314) on :
Keep fighting Steve!! Bea all the best wishes and prayers from my end
Posted by seekhelp (Member # 15067) on :
I don't know what to say except I'm terribly sorry for all both of you have gone through. These doctors belittle one's life w/zero remorse. If this was their family member on that bed, would this be the same with the doors closed? It's a sickening state of affairs and a true wake up call what a huge risk everything is both ways.
One puts their life, faith under a LLMDs care. This is what always has scared me terribly. When the true disasters happen, they have no power/influence to do anything for their patient. However, believe me, I realize the doing nothing route can yield disastrous results too.
Praying for the best for you and Steve.
[ 09-29-2012, 11:49 PM: Message edited by: seekhelp ]
Posted by jackie51 (Member # 14233) on :
You are both in my prayers.
Hugs...
Posted by nefferdun (Member # 20157) on :
I am so sorry he is doing worse and in such critical condition. I hope and pray he has a turn around. Hang in there. Everyone on lament loves both of you. You are the best.
Posted by lax mom (Member # 38743) on :
Even Dr H stated that the Tularemia test is also highly inaccurate and cultures cannot be done because of the risk to lab personnel.
The cure is 10 days Gentamycin...what the &%@# would it hurt for them to give him 10 days Gentamycin?
"Because of the difficulty in culturing F. tularensis, most cases of tularemia are diagnosed on the basis of CLINICAL PICTURE and/OR serology (23, 103). Serological tests for the diagnosis of F. tularensis infection are attractive because diagnostic work involving culture procedures carries a risk of infection for nonvaccinated laboratory staff (20, 88)."
Bea,
Where 2 or more are gathered in His name, He is among them....well, there are all of us on Lymenet claiming healing for Steve.
Posted by pme (Member # 31621) on :
Praying and praying and praying for you
Posted by hopeful4 (Member # 8486) on :
Praying for Steve and Bea. May your strength and health and life force increase. May all be well. Blessings to you both.
Posted by a mom (Member # 23920) on :
Good night Bea and Steve. We are thinking of you. Janet, Sarah and Jim.
Posted by a mom (Member # 23920) on :
Good Night Bea and Steve. We are thinking of you.
I emailed a long shot to someone I know who is developing a new sensor for rapid pathogen screening of blood parasites. I think he's got malaria working. It's a research device, so he may not be albe to use it in this case, but figured there's nothing to loose in the asking.
Posted by beaches (Member # 38251) on :
I continue to pray to St. Raphael, St. Rita, St. Jude and St. Joseph and asking for their intercession for a healing miracle for Stephen Siebert and relief for his devoted and loving wife, Bea.
Posted by linky123 (Member # 19974) on :
Still praying. Love you.
Posted by Pocono Lyme (Member # 5939) on :
This wouldn't let me copy a section but near the bottom there is a reference to cardiac arrhythmias and pulmonary fibrosis cleared with I think IV Claforan. Sorry I can't remember for sure from 2 minutes ago.
Lord, we know you are the Great Physician. Please place your healing touch upon Steve this morning. Give the world something to talk about! Give Bea your comfort and your peace.
In the name of Jesus, Amen.
Posted by Dekrator48 (Member # 18239) on :
Continuing to pray for Steve, Bea and the medical team.
I just finished reading a book called, "Embraced by the Light" by Betty J Eadie. It is an account of "the most profound and complete near-death experience ever"...at least when it was written in 1992.
It's a pretty amazing read, filled with hope. There is alot of detail in this book that is not in other books I have read about near-death experiences, or accounts of going to heaven and returning to earth.
Betty shares what she learned from God during her trip to heaven.
About illness, she says, "We are not to deny the presence of the illness or problem, we are simply to deny its power over our divine right to remove it."
Now, we know we do not deny the presence of illness....we live with it everyday...but I thought the second part of that statement was very powerful.
About prayer, she says, "I understood that once our prayers of desire have been released, we need to let go of them and trust in the power of God to answer them. He knows our needs at all times and is simply waiting for an inivitation to help us."
and "If they are sick, our prayers of faith can often give them strength to be healed..."
and " I saw that God has a vantage point we can never perceive. He sees our eternal pasts and futures and knows our eternal needs. I his great love he answers prayers according to this eternal and omniscient perspective."...."faith and patience are needed".
If anyone needs a big dose of hope, I recommend reading this book.
Love and hugs to Bea and Steve.
Posted by Tammy N. (Member # 26835) on :
Bea and Steve - continued prayers being sent your way.... all through the day and night. You are not alone. We are all there with you in spirit.
A mom and Keebler - thanks for posting about the Paypal. Was quick and easy.
Posted by a mom (Member # 23920) on :
BUT we should wait until Bea confirms this email and that the paypal account will work ok for her.
I don't trust my brain to have remembered correctly.
Janet
Posted by Tammy N. (Member # 26835) on :
That's the email I used and it worked just fine. If it bounces back for some reason, I'll let you know.
Posted by a mom (Member # 23920) on :
I just talked to Bea.
She has been trying to work with the hospital, but the doctors just do not beleive her.
Is anyone near or around the Roanoke Memorial Hospital, VA, that understands Babesia and chronic Lyme who can help her?
Posted by LymeCFIDSMCS (Member # 13573) on :
A Mom, Did Bea ever find out if they tested for babesia duncani or just for microti?
I had a very similar experience almost dying of respiratory failure from what was likely my babesia duncani (long story, won't hijack list, but Bea and I have emailed about duncani and Steve's case).
I collected a bunch of abstracts/articles on babesia and respiratory issues that I compiled into 10 pages or so. I could email this to Bea if that would be at all helpful to give to the docs -- in one study (below) it's obvious that WA1 (babesia duncani) causes a much more severe respiratory course than b. microti.
J Parasitol. 1999 Jun;85(3):479-89.
Endothelial cell changes are associated with pulmonary edema and respiratory distress in mice infected with the WA1 human Babesia parasite.
Department of Pathology, Microbiology and Immunology, School of Veterinary Medicine, University of California, Davis 95616, USA.
Abstract
A C3H/HeN mouse model was established to study the pathogenesis of the human babesial parasites, WA1 and Babesia microti.
To evaluate the course of parasitemia and the associated lesions, mice were inoculated intraperitoneally with either WA1-infected, B. microti-infected, or uninfected hamster red blood cells.
WA1-infected mice developed dyspnea and moderate parasitemias, after which death occurred. Babesia microti-infected mice experienced low parasitemias with no apparent morbidity or mortality.
WA1-infected mice were thrombocytopenic but not anemic. Hemograms for B. microti-infected mice were similar to controls.
Postmortem examination of WA1-infected mice revealed prominent lesions in the lungs, including pulmonary edema and intravascular margination of leukocytes. No pulmonary changes were detected in B. microti-infected mice.
Blood gas measurements of WA1-infected mice showed reduced oxygen saturation and pH, and increased carbonic acid compared to controls, indicating hypoxia and respiratory acidosis.
Ultrastructure studies of WA1-infected lungs showed hypertrophied endothelial cells containing transcellular channels associated with protein-rich intra-alveolar fluid.
Endothelial cell activation was demonstrated by an upregulation of intercellular adhesion molecule-1 in the lungs of WA1-infected mice. The results suggest that recruitment of inflammatory cells to the lungs in WA1-infected mice induces endothelial cell alterations, leading to pulmonary edema and acute respiratory failure.
PMID: 10386441 [PubMed - indexed for MEDLINE]
Posted by seekhelp (Member # 15067) on :
LymeCFIDSMCS, there is NO test for Babesia Duncani in the real world except for this IgG antibody test through Focus Labs. No PCR from the CDC, major labs. No IgM side through Focus Labs. Blood smears are always an option, but a severe longshot. The system is set-up to fail based on the available panel tests. Even if the stars align and you have 5+ positive blood tests that would point towards Babesia infection, the mainstream docs happily just tell you it's not that you're suffering from.
In reality, none have a clue about this pathogen IMO. It's like fighting a ghost in a white room.
if the doctors don't believe her, who would they ever believe? She is the most educated, intelligent individual I've ever encountered on TBIs reading this forum (and obviously well-composed). If they are disregarding her thoughts, they're intentionally doing it. Her research abilities seem to be phenomenal.
Posted by LymeCFIDSMCS (Member # 13573) on :
Seekhelp, trust me, I know. And I know Steve was diagnosed with babesia a long time ago and still, this doesn't matter to a hospital. I was in a very similar boat. It's criminal.
Even a lot of docs who do treat babesia don't understand it can cause respiratory failure however, esp. with duncani.
Posted by poppy (Member # 5355) on :
There is a lab in CA that does a B. duncani serology, but they only serve a few counties in that state. Here is the link. I am wondering if they might make an exception in this case? Steve has probably been in that state at some point, right? Right.
Igenex does test for duncani specifically, or used to. Clongen also tests for it but it's separate from their species panel test (which does not cover b. duncani).
Are these tests not considered as accurate? Igenex was where I actually had mine (I have duncani).
Posted by baileypup (Member # 22824) on :
This may not be popular, but I can't imagine convincing ID docs to prescribe babesia or lyme meds without corresponding lab tests that support the illness. We all know that is not likely. I've been in the hospital with my husband, and even though he didn't have lyme, my strategy was to focus on the pneumonia and lead that fight, because that is one ID docs understand and will treat. The goal is to get Steve well enough to get out of the hospital and back in to Bea's care.
My thought goes back to Bea's statement; "But of course the bigger question is what caused the original pneumonia that triggered the respiratory failure."
Thankfully, they have kept him on the antibiotic that Bea knew was helpful and didn't pull all treatment. Clearly, they haven't tested for every known pathogen, so administering treatment is hit-or-miss. In good conscience, why are they not throwing multiple antibiotics, as well as an antiviral at his pneumonia to see how he responds. That, for the life of me, I don't understand!
Posted by poppy (Member # 5355) on :
I can't get the Igenex site link directly to the babesia tests to work, so am pasting below what it says. But guessing that Bea already knows this. Their description of where the babesia cases are needs to be updated, because duncani is showing up in east coast people who have not traveled out west.
----------------------------------------------
Diagnostic Tests for Babesiosis
Babesia IgG/IgM (Babesia Microti or Babesia Duncani) IFA Test
Detection of Babesia IgM and IgG Antibodies in Serum by the Indirect Immunofluorescent Antibody Assay (IFA)
This immunofluorescent assay (IFA) indirectly detects Babesia-specific IgG or IgM antibodies in patient serum. Red blood cells from Syrian hamsters, infected with Babesia parasites, are fixed on a glass slide. Patient serum is added, and the patient's B. microti-specific IgG or IgM antibodies bind to the parasites in the infected red blood cells. In the third step, a labeled anti-human antibody is added. Fluorescence occurs if Babesia-specific antibodies are present. The slides must be read with a fluorescent microscope.
Interpretation
Assays for Babesia are usually performed using IFA against cells containing the organism. For the IFA, patient serum is titered using doubling dilutions. These dilutions start at 1:8 or 1:10. Thus, an assay starting at 1:8 would have values at 1:16, 1:32, 1:64, 1:128, 1:256, 1:512, 1:1024, etc., and an assay starting at 10 would have values at 1:20, 1:40, 1:80, 1:160, 1:320, 1:640; 1:1280, etc.
Cut-off ranges between a laboratory negative and a laboratory positive sample are comparable for most clinical laboratories. The laboratory positive must be statistically different (mean +/- 2SD) from the negative sample. This does not imply that a titer of 1:40 or 1:80 is clinically significant. In fact, a positive antibody test by itself implies nothing. However, a positive antibody test, with appropriate clinical symptoms (determined by a physician), can lead to a diagnosis.
Positive Babesiosis titers are generally 1:160 or higher. Early in disease the titers may rise 4-fold to 1:2560. Later in disease the titer falls. For this reason, the testing of paired samples 4 to 6 weeks apart improves the diagnostic efficiency.
Diagnosis based on antibody response requires the seroconversion of infected individuals toward production of anti-Babesia antibodies. Unfortunately, this approach does not always work because:
At the height of Babesiosis (within weeks of the initial bite) a patient with fever may fail to have evidence of antibody. Antibodies often persist long after the symptoms have disappeared. Polyclonal antibody-based tests lack specificity.
Test # 200
Description Antibody IgG & IgM for Babesia microti
Specimen 0.5 ml Serum
Collection & Shipping Collect in Red Tope tube, separate and send at room temperature OR Collect in SST tube, spin and send at room temperature.
CPT CODE 86317 X 2
Test # 720
Description Antibody IgG & IgM for Babesia duncani (formerly WA-1)
Specimen 0.5 ml Serum
Collection & Shipping Collect in Red Tope tube, separate and send at room temperature OR Collect in SST tube, spin and send at room temperature.
CPT CODE 86317 X 2
Nucleic Acid Based Diagnostic Tests (PCR and FISH) For Babesiosis
Nucleic acid based diagnostic tests impart enhanced performance, when compared to currently available microbiological and immunological methods for the detection of parasites in test samples. Some of the advantages are:
Increased sensitivity: The nucleic acid based tests are able to detect a specific parasite in a given sample more frequently. Increased specificity: Accurate identification of biochemically unusual strains of Babesia, and those with dramatically different outer membrane proteins, is possible. These are direct assays for the presence of the parasite and have the consequent potential to identify the etiological agent. The assay is independent of the host's immune response schedule. Therefore, much earlier detection of the parasite is possible. Direct testing allows the monitoring of the efficacy of an antibiotic regime. There is the potential to detect the etiological agent in samples of tissue normally low in antibody titers (such as skin).
IGeneX has developed two nucleic acid based assays for the direct detection of Babesia in clinical specimens: the PCR and the Fluorescent In-Situ Hybridization (FISH) assays. The PCR assay detects DNA and can be performed on fresh or archived clinical specimens. The FISH assay is performed on thin blood smears and detects the ribosomal RNA of Babesia (thereby indicating active infection).
The PCR Screen Test for Babesiosis (B. microti and/or B. duncani)
The PCR-based diagnostic assay for Babesiosis is highly specific and sensitive. It is a three-step assay, performed directly on whole blood. The three steps are:
Hybridization/Selection Amplification of Babesia-specific DNA Detection of Babesia-specific amplified DNA fragments
Hybridization/Selection The hybridization/selection step specifically removes the common PCR inhibitors from the clinical sample and, at the same time, selects, purifies, and concentrates the DNA fragment of interest, thereby improving sensitivity.
PCR Amplification During the second step, the purified Babesia DNA fragment is PCR amplified with Babesia-specific primers. The primer is a synthetically produced nucleic acid sequence that, by design and selection, contains Babesia-specific nucleotide sequences. Under predetermined PCR conditions, this sequence "hybridizes" or binds specifically to Babesia species and not to other bacteria or parasites or human DNA. Therefore, only Babesia-specific DNA is amplified.
Detection of Babesia-specific Amplified Products by Dot-blot In the third step, the PCR-amplified Babesia DNA fragment is detected by dot-blot. The PCR product from each sample is transferred on to a nitrocellulose membrane. The membrane is hybridized with Babesia specific probes targeted within the amplified fragment in a dot-blot format. A positive signal (blue dot) appears in Babesia positive samples on the membrane.
The combination of these three steps imparts a very high specificity and sensitivity to the test.
In order to minimize DNA contamination, separate work stations are utilized for the set- up, reagent preparation, cycling, and detection.
It should be kept in mind that a negative result with the PCR assay implies only that Babesia DNA is not detected in the test sample. The PCR can be performed on ticks and EDTA whole blood, since the organism infects red cells. Samples have excellent stability if mixed with equal parts of 95% ethanol, special IGeneX PCR buffer, or are kept at -70�C
Collection & Shipping 1 Lavender top tube-(EDTA). Ship immediately at RT.
CPT CODE 87800, 87801
Babesia FISH Assay
The Babesia FISH test is in vitro fluorescent in situ hybridization microscopic tests for direct detection of Babesia species (e.g. B. microti, B. duncani) rRNA in whole blood smears from patients of all ages with signs and symptoms of Babesia. The test is intended for use by clinical laboratories for the diagnosis of human babesiosis infection.
Principle:
The Babesia FISH test detects the specific ribosomal RNA (rRNA) of the Babesia genus (e.g. B. microti, B. duncani) in the blood of infected patients. The FISH assay is performed on a whole blood smear. The whole blood is smeared and fixed onto a glass slide. The fixed blood is hybridized to a fluorescent labeled Babesia genus specific probe that is targeted to the rRNA of Babesia. Excess probe is washed away. The smear is counterstained and viewed under the photomicroscope microscope at 1000X using a specific filter for the selected dye. Since, the rRNA is present in the cytoplasm, it causes the parasite to give a fluorescent signal while maintaining its morphology.
FISH Assay Sensitivity - 100%; Specificity >98%
(This is based on the proficiency testing (PT) results on 90 whole blood samples from patients, provided to IGeneX by New York Health Department between 2000 and 2007)
Test # 640
Description Babesia FISH
Specimen 1 ml Whole Blood (EDTA) - Slides will be made at IGeneX when sample is received
Collection & Shipping 1 Lavender top tube-(EDTA). Ship immediately at RT.
CPT CODE 88365
Posted by lymednva (Member # 9098) on :
LabCorp has a test for Babesia Duncani (WA-1). It is my only positive test in this mess.
Posted by Messa (Member # 38065) on :
Praying in Jesus name for total recovery! Prayers and love sent to you both!
Posted by seekhelp (Member # 15067) on :
Lymednva. that LabCorp test is outsourced to Focus Labs in CA. It's the one we all had..many were positive I believe. It's ONLY an IgG test, not IgM. I recall Bea putting an article out saying 28% of those tested were positive. YES, 28%. However, to even bother testing for it, I would imagine you'd need to be ill and have a doc suspecting it. Something is very, very wrong that the lab never bothered to construct an IgM portion in my opinion.
Smells fishy to me.
Posted by seibertneurolyme (Member # 6416) on :
Update Sunday, September, 30
Thanks guys for all the info.
Steve is still relatively stable -- fever came back this morning and heart rate went up but they got both under control quickly with a cooling blanket and change in dose of cardizem. They are leaving him on the paralyzing drug Nimbex for now -- not sure how long he will be on that. His blood gases are looking better as well -- CO2 is down to 65 and oxygen is doing better as well.
But the big news and what I see as a bargaining chip actually is the fact that the PCR test they did was for babesia microti. It was of course negative as he has never had antibodies for that species.
But from my viewpoint they made a mistake and ordered the wrong test because they obviously do not know as much as they think they do about treating babesia.
The babesia PCR test from LabCorp is a send out test to Focus Technologies. It is my understanding that the CDC investigated the Focus Technologies lab recently (in the last year or so) because they were concerned because the lab was having too many positive test results. They could not find anything wrong with the lab.
Clongen does have a babesia PCR test also and F lab may have one -- not sure as they redid some of their tests in the last year.
Clongen also offers a culture test for babesia -- but you have to be off antibiotics to do the test. Steve tried that in April and nothing grew out unfortunately even though the phase contrast microscope exam done around the same time found babesia infected cells.
Also Steve's WBC went back up a little to 27,000 again. Finally got the internal medicine doc to admit that the elevated WBC plus fevers probably does indicate an unknown infection. They are doing more cultures -- blood, urine and stool -- hopefully they will at least find something so they will continue antibiotics.
And what really irks me -- they are testing for c. difficile, but so far I have not been able to talk any of the docs into prescribing culturelle (the brand of probiotic used in the hospital) to prevent c. difficile.
Got caught up on sleep a little last night and spoke with my sister and think I have some ideas on how to proceed. Wish I could move things along a whole lot quicker but am trying to be patient with the process.
Will find out tomorrow if the patient advocates have found another hospital I.D. dept willing to review Steve's chart -- maybe at least another hospital would treat the pneumonia empiracally with antivirals plus additional antibiotics and antifungals as well.
I did find one interesting journal article that I wish there was a lab using this technique.
PMID: 1888313 "Clinical and pathological findings of Babesia infection in dogs"
quote-- Low parasitaemias in routine blood smears complicated diagnosis but smears made from ear or toe capillaries, or AFTER HAEMOCRIT CONCENTRATION, greatly enhanced finding parasitised cells. -- end quote
I think tomorrow may be a long day. Will post an update after I meet with all the docs and various admin staff and committees.
My paypal address is correct as listed.
My sister left me a couple of CD's and I have been playing them for Steve -- one is celtic music recording of hymns and the other one is instrumental piano music. I need to bring in some more of his classical music tapes from home. I think listening to the tapes is calming for me and probably for him as well.
Thanks so much for the prayers and words of encouragement. Just trying to get by one day at a time.
Bea Seibert
Posted by tickled1 (Member # 14257) on :
So relieved to hear he is hanging in there Bea! What wonderful news. Keep fighting!
Posted by Sammi (Member # 110) on :
Bea, I am so glad that Steve is stable. There are a lot of prayers being said for you both.
I so just wish they would give him the meds he was doing the best on, including the meds for Babs. My prayer now is that his Babs test comes back positive, so he will get the treatment he needs. If ever a positive test is needed, it is now.
I also hope another doctor will look at his records.
Hang in there okay? Prayers continue!
Posted by Andie333 (Member # 7370) on :
Bea, this is such encouraging news...I am glad he's stable today and that you've managed to get some rest.
Continued prayers from me.
And thanks, too, for keeping us posted.
Posted by gatorade girl (Member # 24896) on :
Still praying and thinking about you
Posted by Dekrator48 (Member # 18239) on :
Thsnks for the update, Bea.
It's good to hear that Steve is relatively stable, that you got some sleep and you have some ideas on how to proceed.
I will keep praying....Lord, show Bea the way she should go, please strengthen and heal Steve and open the Dr's minds.
Posted by seekhelp (Member # 15067) on :
Great news Bea. I'm happy to hear this. Stay strong. I wish you the best getting the docs to help.
Posted by a mom (Member # 23920) on :
Did it work Bea...? never tried this before...be great if this works...!
Posted by a mom (Member # 23920) on :
Bea, Another thought: if the doctors are worried about C. diff, is there a gastroenterologist who can get you the probiotics?
Posted by Lymetoo (Member # 743) on :
Wonderful!! Perhaps they will continue to TREAT HIM and he will continue to improve!
For what it is worth... You are also on the right track with the music. It has been proven that the body responds best to the real thing...
No synthesized stuff! a REAL piano and acoustical instruments are the ticket! Posted by beaches (Member # 38251) on :
Good news!
Still praying to St. Raphael, St. Rita, St. Jude and St. Joseph for their intercession on Steve's behalf.
Posted by Nancy2 (Member # 95) on :
Still praying for you both!
Posted by Rumigirl (Member # 15091) on :
Bea, hallelujah that Steve is stable!! I pray that a doctor is willing to treat him appropriately, that he continue to improve, and that you both can get out of the hospital, so the real treatment can begin again!
As with all of us, you both are in my thoughts and prayers day and night. I am so encouraged that so far he is proving them wrong and prevailing.
Have you gone to the hospital administrators? That would get the fastest and best response of all. Believe me, they do NOT want a wrongful death lawsuit on their hands!
I googled Babesia and pneumonia, Babesia and respiratory failure and got lots of studies showing both. I should post the links, but don't have time now. These guys are clueless about TBI's!! Or any other pathogens either for that matter.
Posted by seibertneurolyme (Member # 6416) on :
I have decided that the Lord works in mysterious ways.
I already pointed out to the I.D. docs that the vancomycin they were prescribing for Steve's staph epi infection from his PICC line would help treat lyme.
And then his LLMD was asking me today if I could talk them into prescribing diflucan. Don't think I had told the doc that they had prescribed it for the thrush they gave him from the steroids. But at least the diflucan could theoretically help with lyme also and some docs also think it helps with babesia.
Tomorow is day 10 on those 2 meds and the original plan was to stop them after 10 days. So that is one battle for tomorrow.
Tonight the pulmonary docs came up with a new plan. Started Steve on nitric oxide through his ventilator. It is supposed to be a pulmonary vasodilator. Seems to be working -- pulse ox went up from 86 to 92 in about 15 minutes. They will keep him on that -- it is a continuous gas -- for a couple of days and then try to wean him off it.
The interesting and mysterious part is that just today when I went to the medical library I had looked up all 23 pubmed abstracts on babesia WA1. Found PMID: 12654819 "Resistance to acute babesiosis is associated with interlukin-12 and gamma interferon-mediated responses and requires macrophages and natural killer cells."
Here is a quote from the abstract -- Resistance appears to correlate with an increase in nitric oxide (NO) production.
So it looks to me like once again the docs are helping out unintentionally.
A mom -- Yes the paypal payment went thru. Thanks so much for your generosity. And thanks to the others who have contributed.
But as I said in an earlier post cards and letters and prayers are what is needed most -- Have been reading Steve his get well cards and will continue to do so.
Although he is sedated and paralyzed with meds he is not in a coma according to the docs. And he does respond to pain even though he is on Fentanyl. He had blood drawn 2 times and I could saw the spikes on the monitor that shows brain wave activity.
Bea Seibert
Posted by a mom (Member # 23920) on :
Cards it is!! Even my old boss is sending prayers for Steve and you!! Please tell Steve everyone is pulling for him.
EVen someone in Texas is worried about and wanted you to have this abstract:
It looks at the 50% inhibitory concentrations: (IC50s) of 8.3, 11.5, 12, and 126.6 μM for ciprofloxacin, thiostrepton, rifampin, and clindamycin. But the species in the study are B. bovis and B. bigemina.
"Apicoplast-targeting antibacterials inhibit the growth of Babesia parasites"
The apicoplast housekeeping machinery, specifically apicoplast DNA replication, transcription, and translation, was targeted by ciprofloxacin, thiostrepton, and rifampin, respectively, in the in vitro cultures of four Babesia species. Furthermore, the in vivo effect of thiostrepton on the growth cycle of Babesia microti in BALB/c mice was evaluated. The drugs caused significant inhibition of growth from an initial parasitemia of 1% for Babesia bovis, with 50% inhibitory concentrations (IC50s) of 8.3, 11.5, 12, and 126.6 μM for ciprofloxacin, thiostrepton, rifampin, and clindamycin, respectively. The IC50s for the inhibition of Babesia bigemina growth were 15.8 μM for ciprofloxacin, 8.2 μM for thiostrepton, 8.3 μM for rifampin, and 206 μM for clindamycin. The IC50s for Babesia caballi were 2.7 μM for ciprofloxacin, 2.7 μM for thiostrepton, 4.7 μM for rifampin, and 4.7 μM for clindamycin. The IC50s for the inhibition of Babesia equi growth were 2.5 μM for ciprofloxacin, 6.4 μM for thiostrepton, 4.1 μM for rifampin, and 27.2 μM for clindamycin. Furthermore, an inhibitory effect was revealed for cultures with an initial parasitemia of either 10 or 7% for Babesia bovis or Babesia bigemina, respectively. The three inhibitors caused immediate death of Babesia bovis and Babesia equi. The inhibitory effects of ciprofloxacin, thiostrepton, and rifampin were confirmed by reverse transcription-PCR. Thiostrepton at a dose of 500 mg/kg of body weight resulted in 77.5% inhibition of Babesia microti growth in BALB/c mice. These results implicate the apicoplast as a potential chemotherapeutic target for babesiosis.
[ 10-01-2012, 08:42 AM: Message edited by: a mom ]
Posted by a mom (Member # 23920) on :
Bea:
link from another worried freind, although I think you know about this, jsut in case:
acrodermatitis chronica atrophicans If you aren't trained to look for it, you probably won't find it or if you find it, you might never associate it with Borreliosis as they do in Europe. Looking at these pictures, does Steve have any skin problems that are similar in appearance to those in these images?
Sorry Guys, I thought I had tiny url'd this one earlier.
[ 10-01-2012, 08:10 PM: Message edited by: a mom ]
Posted by sparkle7 (Member # 10397) on :
Miracles can happen. Stay strong. I know you are both fighters.
Best wishes to both of you, Bea & Steve.
Posted by LymeCFIDSMCS (Member # 13573) on :
That is so interesting about the nitric oxide, Bea, because nitroglycerin tablets and spray were one of the things that helped turn it around for me when I was in resp. failure from b. duncani and things were very hopeless.
I have a good feeling that these positive interventions will keep Steve turning in the right direction. I'm so glad that Steve has stabilized a bit.
Posted by BoxerMom (Member # 25251) on :
Diflucan has consistently been one of my best Babesia meds. I hope they will continue it.
And I know this shouldn't be the case, but my FIL had Babesia-like herxes on IV Vanco.
I'm glad the nitric oxide is helping. I think it's pretty controversial in chronic infections/chronic illnesses, but for an emergency situation, anything that helps is worth trying.
I'm so glad to hear of Steve's improvements.
Sending love and get-well cards, BoxerMom
Posted by Sammi (Member # 110) on :
Bea, I am so happy there is some help from the doctors even if it is unintentionally. It is good the nitric oxide is helping and can also help with Babs. How timely that you found the journal article regarding this.
Prayers continue.
Posted by Jane2904 (Member # 15917) on :
Continue to keep you both in our thoughts and prayers.
Posted by payne (Member # 26248) on :
Unintentionally, Devine Healing- touched by an ANGEL perhaps... However, whenever, whatever... singing and dancing to the Heavens, Recieve and Be Blessed.. in The Lord, love hug Posted by gatorade girl (Member # 24896) on :
Posted by Dogsandcats (Member # 28544) on :
Our God is a mighty God..
Lord, please heal Steve Give the Dr.'s guidance and direct Steve's care. Watch over everyone who takes care of Steve....
Bless Bea with peace, guide her and give her rest.
In your name, we thank you.
Posted by poppy (Member # 5355) on :
Has he ever been tested for HTLV? It can have pulmonary symptoms and depress the immune system, making a person more susceptible to other infections.
I see on another thread that Bea already knew all the details on babesia testing. Shoulda knowed. But I will leave my post on the subject for anyone else who might need the info.
[ 10-01-2012, 12:56 PM: Message edited by: poppy ]
Posted by Haley (Member # 22008) on :
I agree Bea. God works in mysterious ways. Hopefully that is an answer to prayer.
There have been many times in my journey, that I would rack my brain trying to figure out what to do next. I would eventually surrender and pray.
Out of the blue some provider or someone (that knows nothing about Lyme) would get me heading in the right direction. It blows my mind every time.
Continuing to pray......
Posted by Tammy N. (Member # 26835) on :
Sending continued prayers. So happy to hear Steve is stable. Praying for his recovery. God bless. Posted by YinYang (Member # 36358) on :
Continually thinking of the two of you. I hope that things continue in this direction. You are both very strong and brave. Sending love and light your way!
Posted by a mom (Member # 23920) on :
Just talked to Bea. She is so totally amazing!! She met with doctors and it sounds hopeful. She will let us know what happens!
Bea posted earlier and said it would help to send Get Well Cards.
mailing address for the hospital:
Roanoke Memorial Hospital - for Steve Seibert P.O. Box 13367 Roanoke VA 24033
Thank You Lord for watching over Steve and Bea.
Posted by Dekrator48 (Member # 18239) on :
Thanks for letting us know, a mom, that Bea talked to the Dr's and it sounds hopeful.
Our God is an awesome God.
Thank you, Lord Jesus, for hearing our prayers.
Continuing to pray for Steve, Bea and the medical team.
Posted by Lymetoo (Member # 743) on :
Praise God!! Keep it up, STEVE!!!
Posted by lax mom (Member # 38743) on :
Go Steve and Bea!!!!
Steve, keep proving the Dr's wrong! Your life isn't in their hands, it never was, it's in God's hands and He still has great plans for you.
Bea, way to keep advocating for your husband!...I don't know where you get your strength but I am in awe.
Posted by momindeep (Member # 7618) on :
Will be praying for Steve and Bea. May you feel His presence and power.
Posted by Dekrator48 (Member # 18239) on :
So glad to hear that things are looking up! We will keep the prayers coming!
a mom, the hospital address you have listed is different than the one I sent the card to last week.
Has something changed? I hope the card made it to the right place.
Posted by Lymetoo (Member # 743) on :
This is what Bea had posted on the other thread:
Attn: Stephen Seibert Carilion Clinic P.O. Box 13367 Roanoke, VA 24033
At least the PO box and city are the same.
compare to:
Roanoke Memorial Hospital - for Steve Seibert P.O. Box 13367 Roanoke VA 24033
????????
Posted by seibertneurolyme (Member # 6416) on :
Either address is ok.
Several years ago Carilion bought Roanoke Memorial Hospital and also Community Hospital in Roanoke. They basically closed Community Hospital except for some clinics I think and expanded Roanoke Memorial.
Carilion owns quite a few hospitals in Southwest Virginia and maybe a couple in Southern West Virginia as well. A couple of years ago they started a new medical school as a joint venture with Virginia Tech in Blacksburg, Virginia. Some of the nurses told me they thought there were only 12 students enrolled in the medical school but not sure if that number is correct.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Update Monday October 1, 2012
Prayers have been answered.
I.D. sent a new doc � an older gentleman who actually listened and thoroughly reviewed Steve�s chart. Will post more details tomorrow if they follow thru on their promises.
Also on an encouraging note � Steve�s WBC is back down to 21,000 and he has not had any fever or heart rate issues today. Still considered to be in critical condition for now.
The new I.D. doc was still trying to say Steve never had Lyme since he has never had a positive Western Blot. I asked him how he would explain his SPECT scans. He said he hadn�t seen those pictures, but would look at them tomorrow.
I am trying really hard to get along with the docs as they are the only ones Steve has right now (my sister's advice), but that doesn�t mean they can just pick and choose which tests to believe especially when they don�t even understand the tests to begin with.
They have agreed to send a PCR test to Clongen for Babesia Duncani.
Thanks so much to those who have sent gifts via paypal. Hopefully later this week I can get around to posting a few links that can help you in return.
Steve got a couple of really cute cards from some kids in Kentucky today. Anna tell your kids thanks. The one that says not to be afraid because he sends his angels to protect you is very appropriate.
Steve likes to tell the story about how his dad helped him get over being afraid of spooks at night. At first his parents would come into his room and look under his bed and in the closet etc. Then after doing that for awhile his dad put a chair in the corner of his room. He told Steve that when he woke up at night to look over at that chair. That his guardian angel was there and would watch out for him.
Steve was around 3 years old I think he said. He wanted to know how his guardian angel would chase away the spooks. His dad told him that his guardian angel was 10 feet tall and had a name he couldn�t pronounce. He told him his angel would draw a flaming sword to chase away the spooks. After that he wasn�t afraid of the dark any more.
One of the 2 gentlemen I met on the hospital ethics committee came by Steve�s room today. He said he would be back to check on him every day. He is 91 years old and is a retired surgeon I think he said. He apparently has a very keen mind and uses the internet. I gave him a copy of the flashdrive with Steve�s phase contrast microscope pictures. Actually I sent a copy of that to Dr Kilani at Clongen Lab as well. Was told Dr Kilani was going to write a report on it which I can�t wait to see.
As long as Steve is here I am going to do all I can to educate the docs and nurses about tickborne diseases. After all Steve has been through that is the least I can do.
Some of the nurses even told me they are praying that Steve pulls thru this.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
I want to send out a special thank you to all those working behind the scenes on Steve's behalf. All of us pulling together really can work miracles.
Bea Seibert
Posted by Winni (Member # 36772) on :
Bea, I am so glad to hear that the Dr.'s may be opening their minds a little and are listening.. even if they only hear everyother word, it is something. Good luck tomorrow with the new ID doctor. Love and Prayers!
Posted by tickled1 (Member # 14257) on :
Thanks so much for taking the time to update us Bea. You must be absolutely exhausted. As far as guardian angels go, YOU are Steve's guardian angel and he is very blessed to have you.
Posted by seibertneurolyme (Member # 6416) on :
LymeCFIDS -- Interesting point about the niacin. Steve took that for probably 6 months or longer last summer. He did not even flush until he got to 300 mg per dose I think it was. He did 500 mg 2 or 3 times daily for several months.
But then he tried arginine and felt that that was much more helpful for increased bloodflow to the brain.
He probably should have stayed on the niacin, but he did stay on the b complex at 100 or 200 mg daily -- was actually taking that with the niacin as well because too much of a single b vitamin without the others can cause problems.
Bea Seibert
Posted by Tammy N. (Member # 26835) on :
There's no question God's hand is in this. You and Steve are so strong and brave.... in the face of all the resistance. It would be wonderful for this experience to leave a lasting impression with all of the doctors and nurses, so that they may become better informed about the truth of Lyme and the devastating co-infections. You are a wonderful teacher. I pray these docs open their minds so they can learn.
Posted by a mom (Member # 23920) on :
It's from Dr. Aucott's Slice Study
Posted by Dekrator48 (Member # 18239) on :
Praise God!!!!!!!!!!!!!!
Sounds very encouraging, Bea!!
Steve's guardian angel is still right there with him.
I am so proud of you, Bea, for all that you persevere through, and yet you keep moving forward in steadfast faith.
2 Corinthians 5:7(NIV)
7 For we live by faith, not by sight.
Posted by Rumigirl (Member # 15091) on :
Oh, Bea, this is thrilling that he is doing slightly better and that things are opening up slightly with the drs.
With his guardian angel that he grew up with, with you as his guardian angel, and with all of the people that are praying for him, what can't be accomplished??
Love and prayers. May you both prevail triumphantly!
Posted by Readytogetbetter (Member # 38763) on :
Bea, new to lyme myself and following your journey with Steve recently. Wow.... so many positive thoughts coming your way. The love of family, friends and god is amazing! Be strong. Thinking about you both.
Posted by beaches (Member # 38251) on :
Bea, you are just amazing. What a great wife and and advocate you are for you beloved husband.
And what a great example you are to so many here of honoring your marriage vows - through sickness and in health.
You both remain in my prayers. And I continue to request the intercession of the saints on your behalf.
God Bless you both.
Posted by FuzzySlippers (Member # 13658) on :
All praise and Glory to God!
Bea, thank you for taking the time to keep us up-to-date. It really helps us keep our prayers for Steve current.
I must admit, I am feeling quite strongly that you should write a book once Steve is better. I can't think of a better or more credible person than you to provide the much-needed edification to Doctors as well as the rest of the world.
Since they have told you that Steve is not in a coma, and can respond to stimuli, and you've stated that playing his classical music for him and reading him the cards which have been sent help him, you tell Steve from his friends here at Lymenet this:
When he's not strong enough or able to pray, we'll pray for him. And if Steve is still frustrated from not being able to speak with God directly, tell him that St. Francis de Sales of France once said, "Lord let me make my sickness itself a prayer to you for now."
And, Bea, I came across this prayer awhile ago and I immediately thought of you:
Heavenly Father, I am in need tonight - so weary I can hardly think or pray aright; but you have known the toil, the grief, the strain of human suffering, and felt the pain of utter weariness -- the sting of tears, fatigue -- and so you know my need.
I have no words to say, but in my heart I pray in Jesus' name.
Prayers will be continuing for you both. Steve has got to be the luckiest guy on the planet to have you for a loving wife, Bea.
Go, Bea, GO!
Hugs from Fuzzy
Posted by MichaelTampa (Member # 24868) on :
Some wonderful news to read there!
Posted by RZR (Member # 20953) on :
Thank you, Jesus!
Sounds like prayers are being answered!
Posted by Jane2904 (Member # 15917) on :
Thanks so much for the update.
Continue to keep you both in our thoughts and prayers.
Bea, you are truly an Angel.
Posted by Sammi (Member # 110) on :
Bea, it is so good to hear some encouraging news.
It sounds like the retired surgeon from the ethics committee is a good person to have on your side.
I continue to pray, and I hope things keep improving.
Posted by Dekrator48 (Member # 18239) on :
I have also been thinking in the last week that Bea should write a book about Steve's struggle with tick-borne diseases when he recovers.
Praying this morning for new enlightenment for the Dr's and some wisdom from the 91 yr old retired surgeon, along with healing, comfort and peace for Steve and Bea.
Posted by linky123 (Member # 19974) on :
Bea is my hero.
Posted by AuntyLynn (Member # 35938) on :
Bea -
That is so encouraging that these docs finally agreed to do the Clongen duncani test! After TEN days??! Looks like they are starting to admit their own defeat, and beginning to listen to you! Well done!
Also, it sounds as though you may have an advocate in that retired ID doc - one of heaven's angels? I pray that is so!
Thanks so much for sharing Steve's progress with us - we pray for him without ceasing ... and we rejoice with you when there is reason to hope.
Praise God from whom all blessings flow Praise Him all creatures here below Praise Him above ye heavenly host Praise Father, Son and Holy Ghost!
Posted by nefferdun (Member # 20157) on :
That is very encouraging new and I am very glad to hear it.. Steve had wonderful parents and now he has you. He is a very lucky person in spite of his illness. You are in my thoughts and prayers everyday.
Posted by philly78 (Member # 31069) on :
You are such a wonderful person Bea! I'm glad to read some positive news. We're still praying for you guys here!
Posted by poppy (Member # 5355) on :
Any chance of getting them to send several vials of blood to Clongen, maybe increase the chances that the PCR will find something? As you know, there are false negative PCRs because the pathogen was not in that particular sample.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by Tammy N.: There's no question God's hand is in this.
- Amen to that one!! So encouraging, Bea!
PS.. I loved the Guardian Angel Story!!
Posted by hopingandpraying (Member # 9256) on :
Dear Bea and Steve,
I've been praying all along with everyone else that Almighty God heal Steve and give you strength to continue fighting for him. It is so good to read that things are finally looking up for the both of you!
Without getting into specifics, I can identify with many of the things you have experienced. We fight for our loved ones, be they children, spouses, etc., not only because we love them, but also because there's NO ONE out there to guide us every step of the way with this awful disease!
I wanted to share a verse of Scripture that I find very comforting and hope you will too:
"I lift my eyes unto the hills Where does my help come from? My help comes from the Lord The Maker of Heaven and Earth." Psalm 121:1
He has always been there and brought us through terrible times!
May you also find strength and comfort in the words from the song, "Praise You in This Storm" by Casting Crowns. It brings tears to my eyes every time I hear it.
"And I'll praise You in the storm And I will lift my hands For You are who You are No matter where I am And every tear I've cried You hold in your hand You never left my side And though my heart is torn I will praise You in the storm."
Bea, you have helped so many others, now may we continue to help you (& Steve, of course!) as well as hold you up in prayer.
God bless you both.
Posted by randibear (Member # 11290) on :
may I ask what Bea's and steve's age is? It would Help us older patients to know that we can still fight this.
Posted by LymeCFIDSMCS (Member # 13573) on :
Bea, first of all, congrats on the TRIUMPH of getting the docs to do the CLongen test for b. duncani. Steve's course is so much like mine that just from a gut perspective (and from the research) it sure seems like b. duncani is the cause of the ARDS.
On the nitric oxide front, I had a thought last night that maybe that is why Hulda Clark uses very huge doses of CoQ10 to kill liver flukes -- that is, maybe it's antiparasitic by increasing nitric oxdie somehow.
It turns out I was right -- it can decrease the (bad) proinflammatory NO and increase the (good) endothelial NO, which has to do with breathing, microcirculatory issues, etc.
I just thought I'd mention it -- another thing worth looking into. since you mentioned the NO seems like a helpful strategy for killing b. duncani (and helped me too in a similar state, when near death from b. duncani, when I took nitroglycerin tabs that convert to NO in the body).
Posted by sixgoofykids (Member # 11141) on :
![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
Her research abilities seem to be phenomenal.
![[Smile]](smile.gif)