momindeep
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Member # 7618
posted
Will be praying for Steve and Bea. May you feel His presence and power.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
-------------------- 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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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
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.
-------------------- '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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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
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!
-------------------- Winni Posts: 150 | From Nebraska | Registered: Mar 2012
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tickled1
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posted
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.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Tammy N.
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Member # 26835
posted
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.
Posts: 2238 | From East Coast | Registered: Jul 2010
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It's from Dr. Aucott's Slice Study
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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Dekrator48
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Member # 18239
posted
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.
-------------------- 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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Rumigirl
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posted
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!
Posts: 3771 | From around | Registered: Mar 2008
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posted
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.
Posts: 6 | From FL | Registered: Sep 2012
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beaches
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posted
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.
Posts: 1885 | From here | Registered: Jul 2012
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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
Posts: 503 | From Maryland | Registered: Oct 2007
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MichaelTampa
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posted
Some wonderful news to read there!
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RZR
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posted
Thank you, Jesus!
Sounds like prayers are being answered!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Jane2904
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posted
Thanks so much for the update.
Continue to keep you both in our thoughts and prayers.
Bea, you are truly an Angel.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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Sammi
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posted
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.
Posts: 4681 | Registered: Oct 2000
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Dekrator48
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posted
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.
-------------------- 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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linky123
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posted
Bea is my hero.
-------------------- '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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AuntyLynn
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Member # 35938
posted
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!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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nefferdun
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posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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philly78
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posted
You are such a wonderful person Bea! I'm glad to read some positive news. We're still praying for you guys here!
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
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poppy
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posted
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.
Posts: 2888 | From USA | Registered: Mar 2004
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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."
posted
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).
Posts: 929 | From Massachusetts | Registered: Oct 2007
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-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Jill E.
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Member # 9121
posted
Bea,
I've been off Lymenet for awhile and connecting with patients on Facebook instead. Thank goodness several patients on Facebook alerted us to what was going on - I am praying for you and Steve, and happy to hear there has been some good news.
I did test very high titers to Babesia Duncani on IGenex's test - I never tested positive to Microti, but about five years into treatment for everything else, the Duncani turned positive. I was bitten in California and Duncani is a major issue here. It sounds like things are underway to go with Clongen, so I'm glad to hear that, but I just wanted to clarify for some of the posts that weren't sure if IGeneX had a Duncani test.
I'm keeping you and Steve in my prayers,
Jill E.
-------------------- If laughter is the best medicine, why hasn't stand-up comedy cured me? Posts: 1773 | From San Diego | Registered: Apr 2006
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Bea...thinking of you and Steve. Keep us posted
Hugs
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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posted
Randi -- Steve is 57 and I am 50. He was 45 when he got sick. Left work on disability 2/14/01.
Jill -- Glad to hear that Steve's story is getting out on other sites. I only have time and energy to post here, but what is happening to him -- at least the attitude he is dealing with from the doctors is something that most if not all tickborne patients have to deal with and maybe telling our story will help someone else strategize if they are ever at the mercy of AMA types and I.D. docs.
Steve always thought that if he ever had a really serious health issue such as the one he is dealing with now that the docs would focus on the real problem and not his chronic illness. Wishful thinking on his part unfortunately.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Miracles still happen. The docs have finally given in.
The new I.D. doc is recommending that pulmonary prescribe the mepron and zithromax. It is fine with me if they want to play those games and not have I.D. write the prescriptions. As long as they let Steve have the medicine. I am sure it will only be for 10 days - but you have to start somewhere.
The hospital docs have all agreed that they have no explanation for what happened to cause the respiratory failure so even though they do not believe Steve has Babesia Duncani they are going to give the meds a try - probably just to shut me up. Hopefully Steve will respond and prove to them that we were right.
As unbelievable as it sounds the I.D. doc did not even know how to spell Babesia Duncani.
The new prayer request is that Steve respond to the Babesia treatment so if the PCR test comes back negative they will not discontinue the treatment. In the past Steve has always responded to babesia meds quickly - they just lose their effectiveness over time. He used to just feel better if the treatment was bacteriostatic instead of bacteriocidal. I really don't know what to expect considering everything that has happened lately. ------------------------------------------------
They ended up writing the scrips for 7 days only. First dose of IV zithromax at 500 mg daily and oral mepron (thru feeding tube) at 750 mg 2 times daily should be tonight.
Second prayer request is that Clongen lab find something on Steve's new blood smear. I woke up at 3:30 a.m. last night and realized that since Clongen would be doing the Babesia Duncani PCR they should have enough extra blood to do another slide. I asked Dr Kilani if he could concentrate the hematocrit before doing the new bloodslide and he has agreed. He is worried about Steve and said he was praying for him.
The hospital docs probably think I am crazy to insist on babesia treatment, but they do admit that it is their last hope as they have found nothing else to treat. I offered to sign a special informed consent form (my sister and another LymeNetter suggested that idea) and am waiting for that form while I write this.
Steve has had no fevers today. Pulse ox in low 90's and heart rate mid 70's. Basically no change from yesterday - WBC remains at 21,000. But he is trying to wake up - wiggled his toes and even tried to cough - I see that as a good sign. But they on the other hand increased the dose on his paralytic (Nimbex) but left the sedation unchanged (Fentanyl and Versad).
They have continued the IV zosyn and IV diflucan (100 mg daily) for now.
I asked about tapering the steroid dose - Steve is currently at 20 mg Prednisone - was told they were afraid that would increase his metabolism and put more strain on his heart and organs. He is still at 100% oxygen and remains in critical condition.
Bea Seibert
I wrote the above post earlier today while waiting for the docs. It is basically correct -- except for the fact that I am still waiting for the informed consent form to sign and Steve is still waiting for his meds.
I know what dept is to blame for not having the form ready. The I.D. doc supposedly had a 20 minute discussion on the phone with the pulmonary doc and apparently the 2 agreed in theory to give Steve the babesia meds. But pulmonary thought I.D. would be writing the scrips.
By the end of the day when I saw the pulmonary doc I was getting stressed out over the delay -- had already waited 24 hours by that point. I spoke up and said that the ethics committee told me that any doc in the hospital could write a scrip for any med (except controlled drugs I guess) regardless of which specialty the med related to.
The pulmonary doc promised to write the scrip once they figure out who or what dept has to write the informed consent form. Said they had never written a scrip based on another department's suggestions before. That just shows who is in control and running the show.
I will convey to the nurses in the morning that if I do not get the form to sign and Steve does not get his meds by 12:57 pm (48 hours after they were promised) then I will be on the phone calling in reinforcements.
I think I may go ahead in the morning and pass on the info to the patient advocate (a hospital vice president who seems like a really nice lady) that every day's delay is costing the hospital in excess of $10,000 -- I was informed today that that is the cost of the nitric oxide machine. And I have no idea what being on a ventilator costs on top of that.
This whole situation seems so insane even I have a hard time believing it really is real and not a nightmare.
Considering Steve has been waiting 20 days now for babesia meds I am not going to put up with any more delays without creating a real fuss.
Everything I have read about ARDS says to support the respiratory issues and to treat the original cause of the problem if known. I need to keep my focus on that goal -- in the absence of any other cause then Babesia Duncani seems the most likely cause.
Of course with Steve it could be some other unknown blood borne pathogen such as those seen on bloodslides by Clongen Lab multiple times. But babs treatment is a reasonable treatment plan for any blood borne protozoa.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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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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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Go get 'em. Bea! I'm glad that you are standing up to them more strongly, as that is what is needed. It is a nightmare and truly insane. It's scary what can happen to us once we end up in a hospital.
Whenever I had to go to an ER during Lyme tx, I couldn't wait to get out of there, due to their ignorance and antipathy towards all things Lyme (except one time when they actually dx'd me with
Lyme Carditis. But then my LLMD wouldn't treat me for it, as he was on a tear against putting people on IV (fearing for his license). Sorry for the digression. Just meant how scary it is when we are at these guys mercy!
I am so impressed with your progress and Steve's small improvements. I pray for his improvement and for success with the drs and the test.
Posts: 3771 | From around | Registered: Mar 2008
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Sammi
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Member # 110
posted
Bea, I am not surprised the I.D. doctor did not know how to spell Babesia. I have had this happen also. It is crazy.
I have had malairal smears done in the past. I believe on the lab bloodswork it states something like a negative smear does not rule out disease (because it is hard to catch it with a blood test). Hopefully the doctors are aware of this.
I am praying he gets positive test results. I am also praying that he responds to the meds and continues to improve.
Steve is a very lucky man to have such a loving and caring advocate.
Posts: 4681 | Registered: Oct 2000
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Dekrator48
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Member # 18239
posted
Bea,
You are one very amazing human being!!!
It's about time the Dr's admit they should try what you suggest since they have no answers.
I am fervently praying for your requests.
When Steve recovers, he will be shocked to read all the details of his struggle on this thread, but I suspect that he will not be surprised at all by your unending devotion.
-------------------- 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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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
You are Superwoman! Don't let them tear you down. You know what Steve needs. It must be so incredibly frustrating to wait for them to step up to the plate while watching Steve struggle. They will soon see you were right all along and then you can shove their munchaussen comments right down their throats!
Posts: 2541 | From Northeast | Registered: Jan 2008
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Bea, thank you for the update. Still praying.
Take care and God bless you.
-------------------- '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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tickled1
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Member # 14257
posted
I also have to say that you have handled all of this with such grace. Not sure if I would be able to act like a "lady" considering the circumstances but that certainly is the way to go to maintain their respect.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Prayers are continuing, not only for the both of you, but also that God will open the eyes of the specialists and make them see the truth.
I can't help but think the Lord is using both of you and this whole situation in a powerful way to bring Lyme and co-infections to the forefront (finally!). May this be the turning point for everyone!!
"Surely, He has borne our griefs And carried our sorrows; Yet we esteemed Him stricken, Smitten by God, and afflicted. But He was wounded for our transgressions, He was bruised by our iniquities; The chastisement for our peace was upon Him, And BY HIS STRIPES WE ARE HEALED. "
Isaiah 53:4-5
Stay strong. God bless.
Posts: 8981 | From Illinois | Registered: May 2006
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AuntyLynn
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posted
Still praying Bea.
Any news?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Bea, you go girl!!! By the grace of God, you were given the gift of time, and now you have earned the right to demand that Steve get the treatment he needs.
[ 10-03-2012, 02:50 PM: Message edited by: Lymetoo ]
Posts: 964 | From san diego | Registered: Oct 2009
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posted
Praying for you and Steve! You are truly an inspiration to me as a caregiver.
Posts: 312 | From Utah | Registered: Nov 2010
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map1131
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Member # 2022
posted
Bea, go get them lady. In fact forget the lady like....go in fighting & screaming.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sometimesdilly
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Member # 9982
posted
Bea-
So many years of on and on reading and posting here, but YOU are equally a constant--always such an inspirational care-giver and beautiful soul.
Pryaers to you and to Steve, and a very heartfelt thank you for the loving soul you are.
Hugs, Dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Bea just called! They finally have her the informed cosent, she signed. She said she'll try to log in for update after a bit of well deserved dinner.
Bea said the first dose of Mepron is supposed to be tonight.
She did not know if the hosptial sent the blood to Dr. Kilani. He had not received it when she last checked. I hope the hosptial did what they said and sent it out.
Bea, you and Steve are both are amzaing!!
Hugs and Prayers!!
Posts: 124 | From Maryland, USA | Registered: Jan 2010
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Stay strong. It's like you are fighting the battle for all of us We may mot be there physically but we ARE right there with you!
Get as much sleep as you can so you can stay vigilant!
-------------------- ---------- Danni Posts: 311 | From Glen Mills, PA | Registered: Jan 2009
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Rumigirl
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Member # 15091
posted
Thank you, a mom, for updating us. What a saga. I hope that they did send the blood to Kilani at Clongen. It's truly sobering how hard it is to get the drs in a hospital to do the most basic of things
that can mean the difference between life and death. Not that it is news that there is so much ignorance and antipathy to all things Lyme.
We are all continuing to pray for you both.
Posts: 3771 | From around | Registered: Mar 2008
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Finally signed the informed consent form at 6:15 p.m. today.
I am still in shock - the I.D. doc actually is listed on the form. I think they wanted to be listed as ``suggesting'' the treatment for babesia in case it actually works.
Some of the phrases on the form -
``... no definitive diagnosis of Mr. Seibert's lung problems can be made at this time by the patient's physicians at Carilion.''
``I am fully aware that the patient's condition is life-threatening and he is in serious and critical condition.''
``I have been advised that a possible diagnosis for the patient is Babesiosis...''
``I have further been advised that given the grave condition of the patient, such treatment would likely be futile, but would not result in harm or enhanced suffering.''
``I am aware that the practice of medicine is not an exact science.''
And now for the kicker - ``I herby assume all risks, hazards, costs, complications, and consequences of the above mentioned treatment.''
Yes, not only did I have to fight for Steve to get the mepron and zithromax for 7 days - but we get to pay for it as well.
One battle down and probably many more yet to come.
Hubby's LLMD said he would be really mad if he knew what was happening - I am sure of it. We did have the 6 days to discuss what he wanted done while he was on the steroids before he had the bronchoscopy and ended up on the ventilator.
I will just keep praying that it is not too little too late.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
WOW, CYA much??
They're in CYA mode but "just in case" this plan of action works for Steve, they'll look to get credit.
You did the right thing signing the form. But my God, could they have made it anymore difficult for you? I am not surprised. No doubt they had their legal and ethics depts on this like white on rice.
Bea, you shook them to their core. No doubt they've never encountered someone like you. Keep doing what you're doing.
But also please try to get sleep and rest for yourself. When you lay your head down at night, rest assured that so many here are with you and Steve in spirit and in prayer.
I continue to keep you both in my prayers.
Posts: 1885 | From here | Registered: Jul 2012
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Bea,
Praying that the mepron and zithromax causes dramatic improvement in Steve's condition.
If I had an "Advocate of the Century" award, it would go to you!
I'm not at all surprised at the wording on the consent form.
Covering their own behind is their main, or should I say only, concern.
It is so laughable for them to say that YOU have been informed that a possible diagnosis is Babesiosis, when you informed them, and they obviously don't know much about babesiosis.
That can be a whole chapter in the book I hope you write someday when Steve recovers.
Will keep praying and praying!!!
-------------------- 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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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Wow Bea, what a saga!
I pray that Steve will repond to the Babs meds most importantly so he will improve, and secondly so these doctors will learn something.
quote:Originally posted by seibertneurolyme: Hubby's LLMD said he would be really mad if he knew what was happening - I am sure of it.
So Steve's LLMD does not know what is going on? And his Lyme doctor has no say whatsoever regarding Steve's treament?
Has Steve recently had his immunoglobulin levels tested?
Prayers continue for you both.
Posts: 4681 | Registered: Oct 2000
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Wow, YOU have been advised that Babesia is a possible diagnosis? Unbelievable!
Lets hope that this turns Steve around and provides all those doctors with the learning experience of a lifetime!
You have both been through so much. You are both fighters and truly amazing people.
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Bea, I have been following this post faithfully..and prayerfully. I say WOW. You are one amazing person!! It wears me out just reading it. I can't imagine having to juggle all the intense emotions involved on the scene there. And, how you manage to keep us all informed so well is also amazing. I thank you for the strength and encouragement you show us all. I need that personally right now. You are an inspiration. Hugs and prayers to you and your honey and I too pray that the meds will vindicate you both.
-------------------- KentuckyWoman tired of medical run-arounds
Two roads diverged in a wood, and I, I took the one less traveled by, And that has made all the difference. ~ ~ Robert Frost Posts: 221 | From Kentucky | Registered: Sep 2012
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I so wish that some of our lyme folks that live close by could gather and......would come up to the hospital and visit you Bea.
Take you to lunch nearby and just be there for you to talk real lyme & co chat.
This is my prayer.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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poppy
Frequent Contributor (1K+ posts)
Member # 5355
posted
This is not unusual when people with tickborne diseases get into a hospital. They go there looking for help and get the opposite. I hope this turns out better than some I have heard about. There is a child currently in a Boston children's hospital that the hospital will not release and are trying to take away custody from the parents.
What a nightmare, that the people we go to when most desperate turn out to be the least helpful, and in many cases do absolutely the wrong things.
Posts: 2888 | From USA | Registered: Mar 2004
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Ha ha Kentuckywoman... I know.... just reading Bea's posts makes me exhausted.
You are a fabulous woman Bea ... you have God on your side and all of us.
The last time I was in the ER, I told them I was on Mepron and the doc said "what's that?"
Posts: 2232 | From USA | Registered: Aug 2009
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Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Yay!!
Good luck and still praying.
Thanks a mom and Bea for the updates.
Bea you are one superwoman!!
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Maybe we should picket outside the hospital!
Posts: 2541 | From Northeast | Registered: Jan 2008
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
Bea, it's atrocious that they are making you pay for the treatment, but you're still doing the right thing. I'll keep praying too.
I don't know the hospital's policy, esp. after signing an informed consent form -- but there may still be a way for you to get the hospital costs written off after the fact, as most hospitals do have an appeals process regarding financial need.
You might want to see if there is a patient advocate in this hospital -- they could help connect you with the right resources to get the paperwork for this type of thing, and just be helpful in general in a go-between capacity.
They are often retired volunteers, sometimes people with really good knowledge who just want to continue contributing.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Sammi -- Think I worded it wrong -- Hubby's LLMD meant that they thought Steve would be really mad about everything that has gone on. His LLMD has been very supportive -- we have talked by phone several times. But no the hospital docs do not want to talk to his outside doc.
His LLMD did have one conversation with one of the I.D. people -- the hospital doc had said they would not be able to get hold of his LLMD after 4:00 on a Friday and I said I was waiting for a call back from his doc and they called about then so the doc had to take the call. The hospital doc was angry and did not want to listen to much of anything hubby's outside doc had to say.
That was I.D. doc #2 -- I.D. doc #3 is on the case now. There are only 5 I.D. docs at this hospital and the other 2 are much younger I think.
Will post a more detailed update this evening.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Oh, Bea, the wording on that blasted form??!! They have no shame whatsoever!! Lord have mercy!
So are you in close touch with his LLMD? I know that he has no power in the situation, which is scary. I don't think there is an LLMD anywhere that has any say, due to not having any hospital privileges.
The fact that he's still hanging in there is encouraging. Continued love and prayers for you both.
Posts: 3771 | From around | Registered: Mar 2008
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