posted
As some of you may be aware from my other thread, Steve is currently in the ICU with acute respiratory failure which came on rapidly as a result of double pneumonia of unknown causes.
The nurses commented on how alone and isolated Steve seemed to be due to few family members close by. He is in a hospital 60 miles from home.
Cards and notes would be greatly appreciated. Even a simple handwritten note just saying Best wishes or Get Well Soon would be greatly appreciated. You don't even need to sign your real name -- a fellow lyme patient in whatever city or state would be sufficient.
The address:
Attn: Stephen Seibert Carilion Clinic P.O. Box 13367 Roanoke, VA 24033
Note: Steve is allowed visitors so if there is anyone in Roanoke who wants to come by that would be fine. The only restriction is a maximum of 2 people in the room at a time. He is in Room 626 in the Mountain Pavilion at Roanoke Memorial Hospital. Visiting hours are 10 - 2 and 4:30 - 8 but are not strictly enforced.
2nd request -- Prayers are needed for Wednesday morning September 19, 2012. Steve will be undergoing a bronchoscopy to try to learn the cause of his double pneumonia. The lung doctor is 95% certain that Steve will end up on a ventilator as a result of the procedure. But after a week (5 days on high dose steroids) we don't feel we can delay the procedure any longer.
Please pray that all goes well and that if Steve does require a ventilator that it will not be for the rest of his life but just a short term requirement if necessary.
UPDATE: Just learned the procedure is scheduled for 7:30 a.m. Will be done in the operating room rather than at bedside as usually is done. Steve had one bronchoscopy done back in 2003 when they found the pulmonary nodules but otherwise has no history of lung issues.
3rd request -- I would greatly appreciate it if my post can be reposted on other lyme discussion boards. But please just copy it as I have written it.
For anyone unfamiliar with Steve's medical history the first few years of his illness is summarized in the post below from when I first discovered LymeNet.
-------------------- '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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glm1111
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posted
Card and prayers on the way...so sorry you are going through this.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Pocono Lyme
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In the mail today. My prayers are with you both.
Bea, a little suggestion. Where the address is, you may want to put Steve's room number there too.
My lyme brain didn't know enough to do that. My husband checks over everything I do (by my request) thankfully.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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tickled1
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posted
So sorry Bea
Posts: 2541 | From Northeast | Registered: Jan 2008
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Sammi
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posted
Bea, should the room number be included on the address?
posted
I asked the same question -- was told to leave off the room number in case he is moved to a different room.
They chased me out of the room while they do an EEG and I finally found the medical library which has computers available for public use.
Am posting an update in the other thread.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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map1131
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posted
I've followed your journey with your husband for so many years. I so admire your strength and determination to get the the cause of Steve's latest sx and tx.
I pray that testing of the latest ticks and his blood answer the unknowns causing this set back.
I know you are giving this hospital staff an education that will no doubt help others. You are one tough lady. Your husband is one lucky man. Together you will get the help you need.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
May God give you and your family strength and hope, and may he guide the physicians who are caring for your husband with the knowledge needed to heal him....
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Keebler
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posted
- Bea,
My thoughts and very best wishes are with you and Steve. May there be some good news very soon, along with improvement.
Hugs -
Posts: 48021 | From Tree House | Registered: Jul 2007
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RZR
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posted
Prayers for Steve and you. I am so sorry you are going through this.
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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dbpei
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posted
Bea, I am so sorry. You are both in my thoughts and prayers. I will be putting a card in the mail.
Posts: 2386 | From New England | Registered: Aug 2011
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Haley
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I will be thinking about you and Steve. It's been a long road for the both of you.
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Kudzuslipper
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adding my prayers. big hug for you both!
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sparkle7
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I'm sorry to read this, Bea. You are amazing & have done so much for all of us over the years by trying to help your husband.
I hope Steve will pull through this quicky & regain his health.
Prayers for strength & healing to you & Steve. Best wishes...
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posted
I'm so sorry to read this. Prayers to you both.
Posts: 274 | From United States | Registered: Feb 2012
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Dekrator48
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Dear Bea,
I am praying now and will continue to pray tomorrow and beyond.
You are an amazingly strong and loving advocate for your hubby. I would want someone like you to advocate for me if I were in his place.
I look forward to reading your update after the bronchoscopy whenever you get a chance.
I hope that there is someone that can be there with you, Bea, to support you during this difficult time.
May God hold your hubby in the palm of His hand and heal him from all illness. May our Lord fill you and your hubby with peace, strength and hope.
John 11:40(NIV)
40 Then Jesus said, �Did I not tell you that if you believe, you will see the glory of God?�
Matthew 7:7-8(NIV)
7 �Ask and it will be given to you; seek and you will find; knock and the door will be opened to you. 8 For everyone who asks receives; the one who seeks finds; and to the one who knocks, the door will be opened.
Philippians 4:6-9(NIV)
6 Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.
7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.
8 Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable�if anything is excellent or praiseworthy�think about such things.
9 Whatever you have learned or received or heard from me, or seen in me�put it into practice. And the God of peace will be with you.
Matthew 11:28 New International Version (NIV)
28 �Come to me, all you who are weary and burdened, and I will give you rest.
Isaiah 41:10(NIV)
10 So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand.
-------------------- 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
^
-------------------- '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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Dekrator48
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posted
Bea,
I've been praying for Stephen, you, and the medical team this morning and I'm sure others have too.
I am believing that God will heal Stephen.
Hugs!!!
-------------------- 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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Steve did have the bronchoscopy and is on a ventilator. I just saw him briefly. They have decided to keep him sedated the rest of the day with versad and fentanyl. He is being moved to a different ICU on the 9th floor of the hospital.
All they visually saw during the bronchoscopy was the thrush -- Steve was very unhappy when they told him about that yesterday because we had worked really hard to keep his good bacteria balanced and even with all his years of antibiotics he has never had thrush.
They told me that his airways were clear and not inflamed -- so for now he remains a medical mystery. The lung doc told us yesterday that he would be looking for zebras since they have already pretty much ruled out all of the common causes of pneumonia.
Not sure if I reported this info before or not. Steve's problem is an oxygenation problem -- not a ventilation problem. He can exhale carbon dioxide but his oxygen cannot get across the cell membranes into his bloodstream.
The way I explained it to my mom is that the lungs are trying to seal off an infection and keep it from getting into the bloodstream. Even on the bipap with 80 or 90% pure oxygen being forced into his lungs his blood gases show 89% of normal oxygen levels. That was a couple of days ago.
They plan to start tapering him off of the steroids today.
Not really much more to report at this time.
I will post an update later today if the surgeon tells me any more if I ever get to actually speak to him. Otherwise all we can do is wait for test results.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Dekrator48
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posted
Thanks for the detailed update, Bea.
I will continue to pray for Steve, you and the medical team.
-------------------- 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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AuntyLynn
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Bea -
So sorry to hear this!
Prayers for Steve - and for you - as you deal with this latest challenge.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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philly78
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Prayers coming your way.
-------------------- 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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beaches
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So sorry to hear this. I will keep you and your husband in my prayers, as well as his doctors so that they find the appropriate remedy to get him to wellness.
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Rumigirl
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Bea, this may sound simplistic, but as you explained his problem of not being able to get oxygen into the bloodstream, it made me wonder how much Babesia---or Babs + Protomyxoa---is causing the problem. Or at least contributing. I'm sure that you've thought of that. And it doesn't sound like that could be the whole story, esp since you said that he had double pneumonia.
Are they putting him on an antifungal for the thrush, I hope?
I presume that his LLMD doesn't have an ideas here. (I know that he would have no say anyway, just wondering if he had any inklings).
Who is supporting you by the way, except us? Surely you need a lot of support here, too. I am so sorry that on top of everything, you are without family close by and are so far from the hospital.
I didn't realize until your plea last night that he was in the ICU and that they called it respiratory failure!
I pray that answers and improvement come soon.
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Carol in PA
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I'm praying for both you and your husband.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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ARDS (acute respiratory distress syndrome) has been reported in the medical literature as a rare symptom/side effect of babesia treatment in both dogs and humans. Actually one journal abstract I read used the terms ground glass which is the radiology description of Steve's lungs.
Steve and I have thought from the beginning that pulsing the flagyl was the trigger and that it is related to babesia and/or some other blood borne parasite. Every chance I get I remind the docs of his history of babesia.
Actually yesterday the I.D. doc made a comment that stuck with me. The doc said that just because something was in his blood did not mean that that was what was in his lungs. I agree but you can't ignore either issue.
I also asked the doc if they were surprised that his airways were clear as shown in the bronchoscopy. The answer was no -- was more or less expected since he has never coughed.
The working hypothesis seems to be that the pneumonia is viral in nature. Hubby had been on amantadine (an antiviral med for 3 weeks when he got sick). I had also been giving him elderberry tincture for several months.
They tried some sort of throat lozenges for the thrush and are probably switching those to another med since they didn't help much.
Sat with hubby for several hours yesterday afternoon. The plan is to keep him sedated as long as he is on the ventilator. It is considered light sedation -- he can be aroused enough to nod his head yes or no and follows instructions.
The I.D. doc said the plan was to try to remove him from the ventilator and put him back on the bipap machine today if respiratory agreed. Respiratory said that was way too optimistic considering the amount of oxygen he needs. I think they turned it down from 90% to 85% on the ventilator.
I told respiratory that I think hubby would agree with waiting a few days rather than be but on the bipap and then have to go back on the ventilator when the bipap was not sufficient.
Hubby ran a fever of 100.9 yesterday -- this is only the 2nd time he has had a fever while in this hospital. This hospital does not consider it a fever until your temp goes above 101 -- every hospital has their own definition of a fever.
Hubby nodded that he was not in pain so that is good.
Talked to Clongen lab and the blood slide may be done on Friday. Testing of the ticks could take several weeks.
If the bloodslide shows some tickborne protozoa then at that point I will probably give the docs a copy of the flash drive from his live blood analysis. Some of the various docs have questioned his receiving IV meds without doing a spinal tap. And of course there is always the question of how do you know he has an active infection.
I am so glad we spent the time and money to do the 2 SPECT scans at Columbia Presbyterian University in New York -- I think those 2 tests are probably the most relevant and respected tests as far as proving an ongoing CNS (central nervous system) infection.
Medical records at this hospital is great. If a test or report is in the system you can request it immediately whether or not the doc has discussed it with you. I have just been requesting labs and radiology reports. Think I will go ahead and get some of the doctors progress notes today -- especially infectious disease and neurology.
May also get the pulmonology notes. Don't see much need for the general M.D. notes right now. So as you can see he has a team of docs from various departments that all consult. Each group comes by at least once per day and amazingly at this hospital you can request that the nurses page the docs if you have questions and someone from that department will respond.
We really have been impressed with the nurses and also the general efficiency of how this hospital is run. So far I am actually glad that there were no beds available at UVA (University of Virginia) for him to be transferred there.
The other choice was The Baptist Hospital in Winston Salem, North Carolina. As many of you know the political climate in North Carolina is very very strongly anti-lyme. I do feel like we were lead to this particular hospital for a reason.
x-ray prior to the bronchoscopy Wednesday showed no change in the pneumonia since last Friday. The I.D. doc was glad we went ahead with the procedure rather than waiting since there is some possibility some of the tests will be completed by Friday. So maybe they can start some sort of targeted treatment then rather than have to wait til the following Monday.
They may start tapering him off the steroids today.
The IV versad which is one of the sedation meds is basically the same as IV valium. More benzodiazepenes are not what we wanted, but maybe between the depakote seizure med and the IV ativan and the IV versad they can calm his nervous system down enough to stop the seizure-like activity. It seems like it might be working since the fever did not trigger a shaking episode.
The hospital told us there is a nationwide shortage of IV phenergan so I am hoping keeping hubby under sedation will lessen his nausea.
All in all Steve seems comfortable. Even though he did have to be put on the ventilator I think we are both at peace with the decision to do the procedure. No information equals no treatment and the bronchoscopy was the only way to get direct evidence of what was going on in his lungs.
That's all for now.
Bea Seibert
As for support -- I talk to my mom on the phone and give progress reports to Steve's stepmother and his LLMD. But otherwise hubby and I are pretty much on our own except for the wonderful folks here on LymeNet.
Hubby did have a talk with one of the hospital chaplins a couple of days before the procedure and I think that was helpful for him.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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dbpei
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Thanks for the update Bea. You are one strong lady - and Steve is being so brave. Sending continued prayers and caring thoughts your way.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Please know that there are so many of us who wish we could be there to give you a hug, an ear, or whatever else we could do.
Your strength, grace, and wisdom are incredibly inspiring. YOU should speak at premarital counseling for couples so they can see and hear what vows mean .
I truly hope that you continue to see the open-mindedness and relative support of the medical staff where you are now.
Take care.
Posts: 447 | From Vermont | Registered: Jan 2011
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posted
It is encouraging to hear the hospital is being fairly open minded. Steve is very lucky to have you and I'm sure you feel the same way about him. Hang in there, both of you!
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linky123
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Thank you for the update. Steve is so blessed to have you in his corner.
Take care and God bless.
-------------------- '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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Dekrator48
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posted
Thanks, Bea, for taking the time to update us.
I wish I could get in the car and drive to VA to support you and Steve.
You are doing a spectacular job, being on top of everything.
Steve, like you, must also be a very strong person. It's good to hear that he is not in pain.
I will continue to pray for Steve, you and the Medical team.
May God bless you both abundantly.
-------------------- 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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Melanie Reber
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Thinking of you Miss Bea and sending my warmest wishes for continued strength, insights and endurance your way. Please... remember to take care of YOU too!
Posts: 7052 | From Colorado | Registered: Mar 2003
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feelfit
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Blessings, Bea. Hoping for answers and the healing that the both of you have fought so hard for.
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lax mom
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posted
Not sure if this will help, but when my husband had fibrosis growing in his belly, it turned out the body was trying to block off Tularemia and keep it from spreading. It's one of the diseases that causes fibrosis...there are different forms of Tularemia. My husband has the ulcero-glandular form.
I also had a thought. Did you read the story that circulated a while back about the farmer from Australia who contracted swine flu, got pneumonia and had his lungs shut down? The doctors wanted to take him off of life support, but someone in his family suggested that they try high doses of intravenous vitamin C. The family had a hard time convincing the doctors to try it, but when they did, he got better!
Don't know if it would help in Steve's case, but I wanted to at least mention it because for some reason it keeps coming into my head when I read your posts.
You and Steve continue to be in my prayers.
Posts: 227 | From Northeast | Registered: Mar 2010
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AuntyLynn
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Great idea LymeGoAway!
Nobel Prize winner Linus Pauling said he was able to cure "hopeless" cancer patients with high dose IV C (50gm/day, if memory serves). It's non-toxic, it couldn't hurt.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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sparkle7
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posted
Bea, just thought I'd mention this... Some people use nebulized iodine for flu or pneumonia. It's important to use the right one but it may help?
You might want to look into it.
Do a search for - Nebulized iodine, pneumonia - on google.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Dekrator48
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posted
LymeGoAway,
Thanks for posting about the Vit C. I had not heard about that, but got curious, so I Googled it and found the info below.
The first one is an article about the farmer from NaturalNews.com. The other 2 are tv reports about that farmer who recovered.
-------------------- 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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Some great ideas but unfortunately my hands are tied. Just today the pulmonologist requested that I bring in all of Steve's herbal and nutritional supplements in the original bottles. They want to make sure he was not taking something toxic he had a reaction to.
Like I told his LLMD this afternoon I feel they are chasing red herrings. He had cut way way back on supplements and herbs back in February and March when he came off meds -- needed a break from all pills. And then we did not resume a lot of things (I really regret that now) due to allocating the money to IV meds.
Meanwhile Steve continues to get sicker. I had just been getting copies of the labs and xrays etc. But today I got a copy of the progress notes -- I am upset that the docs knew his lung function was deteriorating yet they told me he was stable and not getting worse. In another day or two they would have done the bronchoscopy anyway and Steve would not have had to make that decision for himself.
Big lesson here -- always check to see what the docs put in writing -- it hardly ever agrees with what they tell you verbally. I knew that from past experiences but they had seemed so open with info I trusted the docs to be telling us the straight story.
They also had already decided that the increase in WBC was NOT due to steroids as they were telling me. Unfortunately the WBC increased to 32,000 overnight and hubby's platelets dropped to 135.
They decreased the steroids to 10mg of prednisone I think it is daily. But they have not restarted antibiotics.
None of their tests have found a cause for the pneumonia.
Steve's LLMD told me to have them do another special test for a pulmonary embolism -- said that a CT scan was not always sufficient to rule that out.
The notes included lots of unflattering comments about me and hubby's LLMD. So now I have to waste time correcting all the errors and assumptions in the medical notes.
Hubby's LLMD thinks they may know of another doc in another facility that might be willing to accept a transfer. If the outstanding tests do not find an answer soon or if hubby continues to deteriorate then I will have to pursue that option. As his LLMD put it they are just managing his air and not doing much else.
I still feel the most logical explanation is a babesia dieoff which triggered the whole chain of events. And that is something they are not willing to factor into the equation.
I will be going in tomorrow with several medical abstracts and notes to include in hubby's medical file.
Please continue to pray that hubby can hold on until we can find some answers.
Bea Seibert
P.S. They started hubby on a feeding tube today. He seems to be tolerating that ok.
It is so frustrating that they are doing everything right for his comfort except treating the real problem which seems to be some sort of infection. Hubby's LLMD does not feel the bloodwork supports a viral cause for the pneumonia but rather a bacterial cause -- not excluding tickborne pathogens.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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RZR
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posted
I am so sorry to hear Steve is not doing any better. I am praying for God's healing hands to touch him.
You are so strong and dedicated to finding an answer. Steve is fortunate to have you fighting so hard for him.
Hugs
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
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Dekrator48
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Oh Bea, I am praying, and praying and praying.
You are so strong. It must be so hard to put up with all those unflattering comments when you are so knowledgeable and concerned.
But..you know the truth, so stay strong.
Ignorance pervades in arrogant minds.
Praying for God to guide you to the right test/treatment/Dr/hospital...and of course for healing for Steve and for strength for both of you.
-------------------- 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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AuntyLynn
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We are praying for Steve too!
And for you, Bea!
You have been tops as a caregiver, and your observations are invaluable - don't let those who are clueless get to your head!
surprise
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posted
I am so, so sorry you are going through this--
Sending healing prayers---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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sparkle7
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Best of luck with everything, Bea. I know you are doing the best that you can.
I guess the doctors don't know what is causing Steve's problems so they are trying to make him as comfortable as possible. These illnesses are so puzzling. I don't know if anyone knows for sure what they are or how to treat them when it gets to a chronic stage.
I read that fungus can also cause pneumonia. Have you treated for fungal problems? Just throwing it out there. I know you have been dealing with all of this for a long time now.
Take care of yourself, too. Big hug.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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-------------------- Tick Bite: March 2011 ABX Treatment: August 2011 Diagnosed: September 2011 Posts: 137 | From God's Got This! | Registered: Aug 2011
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Dogsandcats
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Bea, I am so sorry you and Steve are going thru this. My prayers will be with you both and faith that God is with you every moment.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
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payne
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Member # 26248
posted
Dear Lord.. Father art in Heaven Holy be Thy Name.... Bea, I haven't been on to your suffering till of Late, Sorry, Tell Steve to RECIEVE, many here, just look at the names,and many prayer groups are focused on YOUR LIVES.. we all stand united with Angels with The BLOOD of Jesus, and this Blood gets in to the LUNGS.. Just one drop of Jesus's Blood onto Steve .. Bea, find your rock and show Steve your strenghts.. in a touch, a whisper , in your eyes. Jesus went to hell and defeated DEATH, that's been done. We Ask That The Lord knows us all and His Promises to those that ask, and we are ASKING. REST in Spirit, rise in Faith, Much LOVE payne..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Amen!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Bea,
I check this website just to see how both of you are holding up. You both are very brave and are doing everything you can. Will continue to pray for both of you. I can't imagine.
I am interested in what you said about the SPECT scan. I would like to get one, but I didn't think doctors would pay much attention to it. I wonder if it would be possible that you could email me the image of the SPECT scan at some point..... at a much later date of course, when steve is back to being functional and well.
Praying that you both will be experiencing peace very soon!!!
Posts: 2232 | From USA | Registered: Aug 2009
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feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Bea,
I was thinking. Something about the thrush found during Steve's scope - and the lack of anything definitive keeps niggling at my brain.
Prayers still needed. Fever of 103 for at least 4 hours (since I have been here this morning) -- may have come down from 103.2 with ibuprofen -- and they are still refusing antibiotics or any other treatment.
They did put him on Diflucan at 100 mg for the thrush.
Cultures are still pending from the bronchoscopy -- viral, bacterial and fungal -- all preliminaries negative.
Pulled the PICC and cultured that this morning. More blood and urine cultures as well.
Checked for clot in PICC line arm with doppler -- none found.
LLMD had me ask them to double check for pulmonary embolism -- they claim CT would have ruled that out and won't do the doppler suggested by LLMD.
X-ray shows worsening of pneumonia -- but oxygen requirements are less (lowered to 7o% from high of 90% 2 days ago). Not sure how to interpret that -- is Steve improving or is the body just starting to shut down?
WBC remains at 30,000 or higher with bands of 29% and platelets have dropped to 135.
Getting very very concerned.
Still no explanation for respiratory failure or for cause of pneumonia. Everything tested so far is totally negative.
Have one long shot at another transfer to hopefully a more babesia literate physician. Waiting on Clongen blood smear results -- report has been promised today. Will probably see how they respond to that report before pursing Plan B.
Bea Seibert
3 seems to be the magic number -- Steve has received 3 cards in the mail each of the last 3 days. Will read them to him later -- for now just trying to sit quietly and not stimulate him so his body can fight.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Praying.
-------------------- '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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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont understand. he is dx with pneumonia and they are NOT giving him abx?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Continuing to pray for some healing and answers for you very soon . . .
Posts: 331 | From West Coast | Registered: Jan 2012
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
quote:Originally posted by lpkayak: i dont understand. he is dx with pneumonia and they are NOT giving him abx?
Yeah, I don't get that either ... incredible.
They must think it's viral, but meanwhile, just let him deteriorate? Even GPs hand out abx for the common (viral) cold!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
I am crying real tears for you Bea as I read this. It is amazing how main stream med. looks in such a narrow minded way.
I vote for the transfer to the other doc if he will take your hubby on. I have personally moved on tons of times and that is how I was diagnosed with Lyme.
I am visualizing a protective bubble around your hubby and asking God to start healing and reveal signs as to what is going on.
Blessings
Posts: 620 | From Ks | Registered: Oct 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Oh Bea -
Thank God they at least took the blood smear! Presumably they're looking for the Babs?
Some of the Red blood cells will be shaped llike a maltese cross if it's positive. There's a great explanation on Wiki about testing for Babesiosis - if they get "stuck."
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