momindeep
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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
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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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Member # 14257
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
Frequent Contributor (5K+ posts)
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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Member # 15091
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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Member # 38251
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!
Posts: 1927 | From se usa | Registered: Mar 2010
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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
Frequent Contributor (1K+ posts)
Member # 19974
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
Frequent Contributor (1K+ posts)
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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Member # 20157
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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