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.
[ 09-27-2012, 11:30 PM: Message edited by: seibertneurolyme ]
Posted by Jane2904 (Member # 15917) on :
Prayers that all goes well. Hugs to you both!!
Posted by beths (Member # 18864) on :
I am so sorry for all you are going thru
Prayers for you both-
Posted by gagamooppop (Member # 34314) on :
Many prayers for you both...very sorry you have to go through this
Posted by linky123 (Member # 19974) on :
Prayers and card sent for you and Stephen. So sorry for all you have been through.
Take care and God bless.
[ 09-18-2012, 11:35 AM: Message edited by: linky123 ]
Posted by glm1111 (Member # 16556) on :
Card and prayers on the way...so sorry you are going through this.
Gael
Posted by Pocono Lyme (Member # 5939) on :
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.
Posted by tickled1 (Member # 14257) on :
So sorry Bea
Posted by Sammi (Member # 110) on :
Bea, should the room number be included on the address?
Prayers continue!
Posted by seibertneurolyme (Member # 6416) on :
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
Posted by map1131 (Member # 2022) on :
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
Posted by anuta (Member # 22646) on :
Prayres for you and your husband. He is so lucky to have you!!!
Posted by mlg (Member # 35383) on :
My prayers are with you and your family!
Posted by jackie51 (Member # 14233) on :
We will keep you and your family in our prayers.
Posted by cht girl (Member # 26170) on :
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....
Posted by Keebler (Member # 12673) on :
- Bea,
My thoughts and very best wishes are with you and Steve. May there be some good news very soon, along with improvement.
Hugs -
Posted by RZR (Member # 20953) on :
Prayers for Steve and you. I am so sorry you are going through this.
Posted by dbpei (Member # 33574) on :
Bea, I am so sorry. You are both in my thoughts and prayers. I will be putting a card in the mail.
Posted by Haley (Member # 22008) on :
I will be thinking about you and Steve. It's been a long road for the both of you.
Posted by Kudzuslipper (Member # 31915) on :
adding my prayers. big hug for you both!
Posted by sparkle7 (Member # 10397) on :
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...
Posted by jlcd1 (Member # 18138) on :
Your in my prayers, so sorry.
Posted by YinYang (Member # 36358) on :
I'm so sorry to read this. Prayers to you both.
Posted by Dekrator48 (Member # 18239) on :
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.
Posted by linky123 (Member # 19974) on :
^
Posted by Dekrator48 (Member # 18239) on :
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!!!
Posted by willbeatthis (Member # 31111) on :
Bea, I am praying for you and Steve. I am believing too in his healing.
Posted by Lymetoo (Member # 743) on :
PRAYING!
Posted by seibertneurolyme (Member # 6416) on :
Update#1
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
Posted by Dekrator48 (Member # 18239) on :
Thanks for the detailed update, Bea.
I will continue to pray for Steve, you and the medical team.
Posted by AuntyLynn (Member # 35938) on :
Bea -
So sorry to hear this!
Prayers for Steve - and for you - as you deal with this latest challenge.
Posted by philly78 (Member # 31069) on :
Prayers coming your way.
Posted by beaches (Member # 38251) on :
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.
Posted by Rumigirl (Member # 15091) on :
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.
Posted by Carol in PA (Member # 5338) on :
I'm praying for both you and your husband.
Posted by seibertneurolyme (Member # 6416) on :
Update #2
Rumigirl,
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.
Posted by dbpei (Member # 33574) on :
Thanks for the update Bea. You are one strong lady - and Steve is being so brave. Sending continued prayers and caring thoughts your way.
Posted by rera2528 (Member # 29886) on :
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.
Posted by YinYang (Member # 36358) on :
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!
Posted by linky123 (Member # 19974) on :
Thank you for the update. Steve is so blessed to have you in his corner.
Take care and God bless.
Posted by Dekrator48 (Member # 18239) on :
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.
Posted by Melanie Reber (Member # 3707) on :
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!
Posted by feelfit (Member # 12770) on :
Blessings, Bea. Hoping for answers and the healing that the both of you have fought so hard for.
Posted by lax mom (Member # 38743) on :
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.
Just brainstorming here. Praying for you guys!
Posted by LymeGoAway (Member # 25041) on :
Bea,
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.
Posted by AuntyLynn (Member # 35938) on :
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.
Posted by sparkle7 (Member # 10397) on :
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.
Posted by Dekrator48 (Member # 18239) on :
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.
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.
Posted by RZR (Member # 20953) on :
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 Posted by Dekrator48 (Member # 18239) on :
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.
Posted by AuntyLynn (Member # 35938) on :
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!
Posted by surprise (Member # 34987) on :
I am so, so sorry you are going through this--
Sending healing prayers---
Posted by sparkle7 (Member # 10397) on :
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.
Posted by xoxoxox (Member # 18778) on :
So sorry to read of the serious issues you are facing. Many thoughts & prayers for you & your husband.
Posted by gagamooppop (Member # 34314) on :
Positive thoughts and prayers bea...we are all thinking about you
Posted by LBS (Member # 33323) on :
Praying for you Bea and your hubby.
Posted by Dogsandcats (Member # 28544) on :
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.
Posted by payne (Member # 26248) on :
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..
Posted by AuntyLynn (Member # 35938) on :
Amen!
Posted by Haley (Member # 22008) on :
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!!!
Posted by feelfit (Member # 12770) on :
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.
Posted by linky123 (Member # 19974) on :
Praying.
Posted by lpkayak (Member # 5230) on :
i dont understand. he is dx with pneumonia and they are NOT giving him abx?
Posted by debilyn (Member # 35753) on :
Continuing to pray for some healing and answers for you very soon . . .
Posted by AuntyLynn (Member # 35938) on :
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!
Posted by Lymetoo (Member # 743) on :
And a WBC of 30,000 and no abx?? Very concerning.
Prayers continue!!!
(PS.. Oravig is a tablet that adheres to the gum. It is used for thrush. Got rid of mine in one day with Oravig)
Posted by cozynana (Member # 34270) on :
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
Posted by AuntyLynn (Member # 35938) on :
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."
Still praying for him - constantly.
Posted by bcb1200 (Member # 25745) on :
Big hugs.
Posted by faithful777 (Member # 22872) on :
Prayers going your way.
Posted by hiker53 (Member # 6046) on :
God,
With You, all things are possible. Place your healing hands upon Steve and guide the doctors in their treatment.
Lord, show your calming presence to Bea and give her peace.
Hiker53
Posted by soccermama (Member # 35101) on :
Jesus you bore our sorrows and carried our griefs. Manifest your healing to Steve now.
Peace and comfort to his wife, Bea.
Posted by RZR (Member # 20953) on :
Still praying.
Jeremiah 30:17 � I will restore health to you, and I will heal your wounds, says the Lord.
Posted by seibertneurolyme (Member # 6416) on :
Update #5
Thank you everyone!!!!!!!!!!!!!!!!!!
The prayers must be working.
After maintaining a temp of around 103 for 4 or 5 hours the docs started hubby on IV Vancomycin and IV Zosyn. By 6:00 pm after 1 dose of each his temp had dropped to 98.5 or 99.5 (not sure if it was oral or under the arm). I had told the docs that he was doing better on the antibiotics he was on in Martinsville -- which were the 2 they have him on plus they had continued the IV zithromax and oral factive and his other malaria meds in Martinsville also.
This is the first good news we have had since this all started. But with Steve it always seems to be two steps forward and one step back.
Steve's oxygen had to be increased back to 75 but that is still not so bad. It has to be reduced to 50 before they will take him off the ventilator.
They went ahead and put in a central line after pulling the PICC line. They needed 2 access lines because some of the things he is getting can't go in the same line.
They are very concerned about his blood pressure and didn't want to be stuck if one of the 2 lines he has becomes infiltrated or can't be accessed for some reason. People with bacteremia or sepsis -- not sure what label they are using -- can go into shock and need blood pressure meds and other things. Steve's pressure has been running on the low side around 90/50 most of the day.
Got the Clongen bloodslide report back. Now they will have to figure out what to do about that. Clongen only found scarce coccobacilli but that means either the unknown infection that caused the pneumonia got into his bloodstream or he has another bacteria in his bloodstream.
Clongen has always felt that with most tickborne patients the coccobacilli they see are some form of bartonella, but it could be something else.
In the past Steve started with numerous coccobacilli and then it decresed to several and then a few and then he got a clean slide. That was over the course of about a year and a half when he was treating with bartonella meds (factive and rifampin).
So far everything the hospital has tested has been negative. So now they really will be scratching their heads. But at least maybe they will think that Steve hasn't been taking antibiotics just for the fun of it. I really hope they do call Dr Kilani at the lab -- he would probably give them an education.
Found a mistake in Steve's medical notes -- they have been saying he has been on 5 mg of prednisone and not 5 mg of cortef. Cortef is less potent -- 5 mg is only equal to 1.25 mg of prednisone I think when they converted it. From the beginning they have been saying he got the pneumonia because he was immunosuppressed. But they had no real documentation to prove immunosuppression. Sure his CD57 is not that great at 70 but that is most likely due to his tickborne infections that they don't believe in of course.
That's all for now. Will check back in tomorrow.
Just going to leave Steve in this hospital for now since they are finally doing something. Maybe by the end of this the docs will have learned a little something to help out the next patient.
Bea Seibert
Posted by Sammi (Member # 110) on :
Bea, I am so glad Steve is back on antibiotics and responding. It sounds like his response to the meds is proof of an infection. I hope he continues to improve.
Has he had his immune function tested recently?
Big prayers continue for you both.
Posted by birdie67 (Member # 35994) on :
So happy to hear Steve is improving!
I will continue to keep you and him in my prayers!
Blessings to you both.
Posted by lax mom (Member # 38743) on :
Thank God he has his antibiotics!
I hope you are able to get some rest and recharge your batteries.
Posted by Dekrator48 (Member # 18239) on :
I am also so thankful that Steve is now on antibiotics and his temp went down.
I bet if it had been the Dr's family member, it would not have taken so long to give antibiotics for that fever, etc.
I will keep praying for Steve, you and the medical team.
Big hugs to you, Bea...wish my arms could reach you through the computer.
Posted by payne (Member # 26248) on :
praises to God.. Bea, in Peace
Posted by linky123 (Member # 19974) on :
So happy to hear this! Will keep the prayers coming your way. Posted by AuntyLynn (Member # 35938) on :
Praise the Lord!
I am so relieved to hear this, but I'm sure not even HALF as relieved as you must be, Bea! Hugs, high fives, and "good on" to Steve! I know he's not out of the woods yet, but at least the docs listened to you, and got RESULTS!
Gotta love this line ...
"But at least maybe they will think that Steve hasn't been taking antibiotics just for the fun of it."
May you both rest easier tonight ... and may God send Steve new strength, and you both new hope.
Posted by payne (Member # 26248) on :
When you plead the blood of Jesus, the destroyer cannot come near.
Posted by LymeGoAway (Member # 25041) on :
So glad to hear that Steve's doing better.
Will continue to keep the two of you in my prayers.
Posted by Lymetoo (Member # 743) on :
Thank you, Jesus!!
Posted by AuntyLynn (Member # 35938) on :
Payne -
You taught me something today.
Posted by WPinVA (Member # 33581) on :
Bea, Sending huge hugs and prayers your way.
I am outraged on your behalf that Steve is getting worse and they are denying him abx!
I know you are trying to work with these people, but I'm wondering if putting a request for abx in writing might help, noting that his condition has been continually deteriorating since his abx were yanked, that he has a confirmed babesiosis infection for which he was being treated prior to being admitted, and the viral angle is just a theory, etc.
I'm just thinking that doctors are always concerned with the liability angle and maybe this would get their attention. If you want to go up the chain, here is a link that I found on their website: http://www.carilionclinic.org/Carilion/Leadership+Team
Another idea: Would his LLMD be able to confer with the doctors treating him at the hospital? Or write a letter requesting abx for him? I know LLMDs can be skittish, but compared to other states, Virginia seems like a fairly friendly state for LLMDs. My own LLMD is on the Governors Task Force for Lyme Disease.
I know you have probably tried or thought of all of this, but you are dealing with so much, so just wanted to throw it out there. Will be thinking of you both.
Posted by beaches (Member # 38251) on :
The fact that Steve's fever went down once abx were started leads me to believe that his pneumonia /?other infection is bacterial in nature.
It will be interesting to see if Steve's morning bloodwork shows a decrease in WBC from the high of 30K--which to me, as a non-medical person is pretty significant for a bacterial infection. I have been given IV abx for infections in the ER with WBC counts far less than that.
I am a bit bewildered that given Steve's extremely high WBC and high fever as well as the pneumonia that abx were not started before now. But better late than never.
As far as "their" criteria for a fever, all I can say is that an adult sure feels like crap once his/her temp goes above 100.
I will continue to keep you and your husband in my prayers. God knows, you've both been through hell and back. It's about time that you and your husband be blessed with a break from all of this.
Posted by Rumigirl (Member # 15091) on :
hallelujah!! Finally! I can not for the life of me understand why they were withholding IV abx until now.
Only 100 mg of Diflucan---yeesh! Clueless.
Thank God that they finally gave him the IV abx and that his fever broke. Prayers for continued healing for Steve and comfort for both of you.
Posted by dbpei (Member # 33574) on :
Oh Bea. I can't imagine going through this nightmare. I am relieved to hear that his fever has gone down and something is finally helping. Sending prayers your way for continued recovery.
Posted by RZR (Member # 20953) on :
Such a relief to hear Steve is doing better!
Thank you, Jesus, for hearing our prayers!
Posted by pme (Member # 31621) on :
Just want you to know I have been praying for you, though I haven't posted. Keep up the fight.
Posted by lpkayak (Member # 5230) on :
yeah...viral or fungal???
id get a 2nd opinion...it just doesnt seem right.
are they saying he is too weak for treatment? that can happen. that happened with my mom
prayers bea.
Posted by payne (Member # 26248) on :
be COURAGEOUS.
Posted by seibertneurolyme (Member # 6416) on :
Update #6
More prayers needed.
Not much time but the big picture is that they still have no clue as to the cause of the pneumonia or the respiratory failure.
Steve had trouble breathing overnight and again this morning when they turned him over in bed. Even with oxygen at 100% his pulse ox fell to 84. They are adjusting the settings on the ventilator. Respiratory has been great. Couldn't remember so I asked and was told that normal room air is 21% oxygen.
I.D. is a whole other story. Found out they did not taper steroids but just dropped them and left him on 10 mg of prednisone. So now they are adding back steroids -- I think they said 50 mg of hydrocortisone.
Steve is back to running fevers of 102 even though his WBC is down to 25,000 now. I asked about putting him on an antiviral also -- think I probably should put that in writing.
But the big issue right now is his blood pressure. Dropped to 85/50 -- they are worried he might go into shock. May give him something to try to get his blood pressure above 100.
I really think he is too sick to be moved so for now I just have to keep making noise.
The pulmonary docs said they could do another bronchoscopy and go in and suction out fluid from his lungs to see if that would help, but they can't do that with his oxygen requirements so high. That would be a last resort.
The nurses are great too -- they watch the monitors and call the docs if there are any major changes.
They finally agreed to do a babesia PCR test but I need to put my request in writing or they will probably only order babesia microti which he has never had titers to.
Just keep praying. I am sure Steve is doing his best to prove the docs wrong on all their assumptions.
Bea Seibert
Posted by nefferdun (Member # 20157) on :
I am sorry you and Steve have to suffer like this. I have my card ready to mail. With any luck he will be out of there before it makes it's way all the way across the country :0)
Protomyxzoa causes respiratory distress which can appear like viral pneumonia. He would be positive on bands 23 and 41, low CD57 and low vitamin D. Symptom differing from babesia is insomnia. Stromectol is easily tolerated, not an antibiotic so does not cause yeast growth.
I hope they find out what is wrong. It must be something more than just babesia because he has been so unresponsive to treatment for so long.
He is SO LUCKY to have you with him. It is obvious to everyone how much you love each other.
Posted by glm1111 (Member # 16556) on :
Bea,
Have been googling different symptoms that Steve is presenting with. Came up with EOSINOPHILIC PNEUMONIA. Underlying cause is cancer or parasitic infection. Are his eosinophils elevated at all?
Gael
Posted by baileypup (Member # 22824) on :
Bea, my heart and prayers are with you and Steve. This must be so scary for you both. I hope you know we are all there with you in spirit.
My husband, who does not have lyme and is never sick, was in the hospital a year ago with pneumonia, brought on by what we "think" was whooping cough. They had him immediately on two antibiotics and an antiviral. The antiviral Valcyte was a HUGE savior for him. Within 24-36 hours he was better. We had to continue to fight to keep him on the anti-viral since the bronchocopy did not show CMV. They wanted to switch him to Valtrex, which is useless. The point is that they didn't wait for the bronchoscopy results to put him on antibiotics and antivirals. I hope you can get him on an antiviral today.
Also, my husband's blood pressure was very low too, similar to Steves. The doctors were going to send him home until they had him stand up, and he fainted from his low BP.
Posted by Dekrator48 (Member # 18239) on :
Continuing to pray with all my might!
God is faithful and I am still believing!!!
Posted by JJ29 (Member # 5288) on :
Sending many prayers and best wishes to you and Steve......stay strong Bea.
Posted by AuntyLynn (Member # 35938) on :
Sweet Lord Jesus,
Please reach out to your child Steve, with the perfection of your healing touch. We know that if we but ask it of you Lord, you will make it so. Stay near to him dear Saviour, and let him feel the peace of your presence, and please strengthen, sustain, and guide his dear wife, Bea.
By thy word, Lord, all things are possible. We thank and praise you, and our Heavenly Father, for all your loving mercies. Amen
Posted by kelmo (Member # 8797) on :
Seconding AuntyLynn's prayer
Posted by Silverwolf (Member # 9196) on :
Hi there <<<<< seibertneurolyme/Bea and Steve >>>>>,
TxC' and I have been adding our prayers to this mix too...
Hoping for better news to come,and for the Lords powerful healing love, peace and rest,to be felt swiftly for you both.
Jus' Silverwolfi
Posted by payne (Member # 26248) on :
thirding AuntLynn's prayer Lord we cry out to You as you are OUR SHEPHERD, and by Your Word where there are 2 by The Stripes of Jesus it is DONE... Bring Steve Home, away from the gray area a Hospital gives US with Lyme, Give Bea and Steve a sign you are "The Great Healer" send Angels to defend our brother from the attacks upon His health.. Give the medical staff the Power to do Your WILL... send a doctor to steve that has the knowledge and courage to step up to the plate, and act. Amen we love you God ! Posted by hopeful4 (Member # 8486) on :
Hi Bea,
Sending prayers for you and Steve right now for hope and a complete healing of body, mind and spririt; strength and courage to help you both through this time; love and peace in your hearts.
Hugs from Hopeful4
Posted by Rumigirl (Member # 15091) on :
Bea, I'm so sorry to hear this turn of events.
For the low BP, for heaven's sake, they need to put him on Florinef ASAP! It's a no-brainer. Usual starting dose is .1 mg, but it can be upped to twice that. If he has a tendency to migraines/bad
headaches, then you would want to up it slowly, ie, 1/2 tablet more in the afternoon. I know you can't rx, but if you know what's what, you can ask for it to be rx'd.
Yes, make some noise about the anti-viral, specifically Valcyte, if the poster above is correct.
I know that we ordinarily want to stay away from steroids with Lyme & co, however, in this situation, it sounds like they are needed. In Jeffries book, The Safe Uses of Cortisol, he advises
going up to 80 mg per day of hydrocortisone when someone has an acute illness. Going way up in dose has helped me when in crisis. So that might help, if you could hold any sway
there (I know, your power is limited with the drs, I'm sure). Of course, it should be tapered down, not just dropped!! Arghh! What were they thinking?!
I wonder about the Protomyxoa? But boy would you have a hard time talking to the drs about anything like that!!
Continued prayers for his healing and comfort for both of you.
Posted by seibertneurolyme (Member # 6416) on :
Update #7
Checked into a hotel last night to get caught up on my sleep a little -- 1 1/2 hours drive each way.
x-ray yesterday showed no change in pneumonia. Hoping today's x-ray will finally show some improvement. To date z-rays show a pattern of no change for a few days then followed by worsening.
I.D. doc yesterday -- the most anti-lyme of the 2 we have seen -- still says increase in WBC was from steroids and not infection. I did point out that the hospital progress notes from the other I.D. doc cited some medical literature reference saying that was not the case. The doc's response -- those were not MY progress notes. So obviously even the I.D. docs are confused and in disagreement.
As to the eosinophils -- when Steve was initially transferred they were at zero -- that had happened one other time -- when he first went back on antibiotics in April. It is my understanding that in pneumonia the eosinophils could be elevated in the lungs but not in the bloodstream -- per the pulmonary doc. I have not seen the pathology reports from the bronchoscopy -- will get copies from medical records Monday.
In the past when Steve treated G.I. parasites his eosinophils were normal until he started treatment and then they became elevated.
I am going to push today to add an antiviral and an antiparasite med to cover all bases.
They gave Steve some norepinephrine by IV yesterday to raise his blood pressure. It came up to 112/60 or so. Has stayed in that range or a little higher overnight.
They were able to turn him last ngiht without causing a drop in his oxygen so maybe there has been some very slight improvement.
Social work was supposed to arrange a sit down meting between me and all the different departments -- all in one room at the same time. Did not happen yesterday and don't know if it will today or not. I think that could be useful so I can summarize his medical history and correct some mistakes in the records.
It is so hard to know what to do that will help but not antagonize the docs to the point of not seeing the forest for the trees.
Just keep praying.
Bea Seibert
Posted by lyme in Putnam (Member # 11561) on :
Hopefully when you meet everyone, some could put pieces together. With you experience snd knowledge you can run rings around them all, it's so hard for them to see. Youve been through so much with your husband, and know his health so well. I hope you can get some rest. Good thoughts for a lasting recovery.
Posted by Jane2904 (Member # 15917) on :
Praying for positive turn around for Steve.
So sorry that things are so difficult.
Posted by Razzle (Member # 30398) on :
Praying for you & Steve. Hoping for improvements and for the doctors to be more open-minded about chronic tick-borne infections.
Posted by glm1111 (Member # 16556) on :
Thanks for the update Bea...Just hoping and praying that they try what you suggest and something works. You are such a trooper and Steve is a fighter. Hope you get some rest and take care of yourself.
Gael
Posted by Sammi (Member # 110) on :
Big prayers continue for you and Steve.
I hope the meeting will go well and that the doctors will truly listen. You know Steve and his history better than anyone.
Please tell Steve we are all praying for him and hoping he improves soon.
Posted by Sammi (Member # 110) on :
Big prayers continue for you and Steve.
I hope the meeting will go well and that the doctors will truly listen. You know Steve and his history better than anyone.
Please tell Steve we are all praying for him and hoping he improves soon.
Posted by Dekrator48 (Member # 18239) on :
Bea,
I am glad you were able to catch up on some sleep.
I admire how strong you are to face a team of people who are thinking differently than you, and to remain steadfast and unintimidated.
I am praying and praying for Steve's healing and for strength for both of you.
I also pray that you and Steve feel the infinite love of Jesus around you as you go through this difficult trial.
Posted by momintexas (Member # 23391) on :
So sorry to read all of this is happening. Sending hugs and prayers your way.
Posted by Lymetoo (Member # 743) on :
Prayers continue, Bea and Steve!
Posted by seibertneurolyme (Member # 6416) on :
Update #8,
They think they have found a gram negative bacteria in Steve's sputum samples. Started him on Topramycin last night in addition to the vancomycin and zosyn he was already on.
No change in x-rays for last 2 days. Lung doc seems to agree with hubby's LLMD that that is the best indicator of the course of the infection. Today the lung doc seems pretty certain that the pneumonia is what caused the respiratory failure and that there is not anything else going on such as cancer for example.
But they are now calling his condition ARDS -- not exactly sure how that differs from respiratory failure, but it is a rare complication of babesia and initially they were saying that he did not have ARDS so obviously babesia was not a factor.
Until they know what the bacteria is they can't predict the course of the illness -- don't know if Steve will get better quickly or continue to get worse before improving.
So far they have not done drug sensitivities and not sure they picked the right antibioc. Steve spiked fevers 3 times today -- twice to 103.8 They finally put him on a cooling blanket and that did bring the temperature down to normal.
They sedated him more heavily today since they changed the settings on his oxygen so he wouldn't be fighting the machine. The nurses have observed that his pulse ox shows 4 % higher than his blood gases. If his pulse ox shows at 90 for example his real pulse ox is only 86. They said that that varies from person to person -- some people there is no difference but I think they said 4 % was about as high a difference as they had seen. They are keeping the oxygen at 95% -- every time they try to lower it to 90% Steve's stats start going down very quickly.
WBC still at 25,800 -- still not really sure if the steroids are causing the high WBC and/or the temperatures.
It seems like they are still kind of up in the air about what is going on.
They did do an echo cardiogram today and it wasn't much different from his last one a little over a year ago.
I think the meeting with everyone is going to be tomorrow when the weekday docs are back. Still haven't decided exactly how I am going to approach that. Hopefully I can see the medical records first and have some idea of what is really going on.
Please continue praying. Steve needs all the help he can get right now.
Bea Seibert
To whoever mentioned the Factive -- I know they had thought about drug allergies in relation to the flagyl since that is the med that seemed to trigger the cascade of events. I assume they looked up his other meds as well, but think I should probably ask.
My mom had a very good question that I think I will ask someone. She wanted to know how the antibiotics would get into his lungs if the oxygen cannot get in
Posted by Carol in PA (Member # 5338) on :
I hope that the hospital pharmacist will be included in the conference.
I'm praying for both of you.
Posted by tickled1 (Member # 14257) on :
Hang in there Bea. So sorry for all you both are going through.
Posted by lymednva (Member # 9098) on :
Bea, I've been following this daily since you first posted. I will be praying for Steve, and also for wisdom for you in finding the right words for your conference tomorrow.
May God wrap his arms around you both and make his healing presence be felt. Hugs to you both!
Posted by sammy (Member # 13952) on :
Hugs Bea, I'm still praying for you and Steve and his medical caregivers.
It just breaks my heart when I read your updates and not much progress has been made. They saw thrush in Steve's lungs. Did they take cultures? Why haven't they started him on some high dose broad spectrum anti-fungals? Clearly that is a problem that needs addressed ASAP! How can he breathe when he has a carpet of fungus in his lungs? I'm going to go cry now...
At least they recognized the need to start him on the antibiotics. If the fevers, low BP, and high WBC were not enough, you gave them positive lab report.
You asked about the antibiotics, with the central line the antibiotics are administered directly into the bloodstream. They are pumped throughout the body to all the organs. Absorption into the tissues varies somewhat. They should choose antibiotics with good target penetration to treat the individual infection.
Big Hug friend. I'll get up early to start my antibiotic again and I'll start praying for you all again then too.
Even if we don't know what to say, if all we can do is cry, God hears our prayers, He knows are hearts, He knows our needs.
Posted by sickofsick (Member # 29258) on :
Been following your updates and praying for you two! Hope he sees improvement soon.
Posted by Haley (Member # 22008) on :
Been thinking of you and praying for both of you all day off and on. Will continue to pray.
Posted by dbpei (Member # 33574) on :
Bea, I am checking in daily to see how Steve is doing. Praying for healing - physically, emotionally and spiritually.
I hope that meeting that the social worker is trying to arrange will happen soon. Everyone needs to put their heads together. You know his health so well. Your input is going to be the most valuable there.
Praying there will be an MD there who can put all the pieces of the puzzle together and get Steve well.
Posted by linky123 (Member # 19974) on :
Just checking in. Still praying for you and Steve.
Take care and God bless.
Posted by Dekrator48 (Member # 18239) on :
Praying that the gram negative bacteria is the culprit and that the new antibiotic will cause rapid improvement.
Praying for complete healing and strength for Steve, supernatural wisdom, confidence and strength for you, Bea, and openmindedness, wisdom and a spirit of teamwork for the medical staff.
When you go to the meeting, may you feel the prescence of the Holy Spirit with you, giving you everything you need to encourage all the Dr's to turn over every stone, and to work confidently and unfailingly with you, the person who knows Steve best.
Big hugs!!!!
Posted by payne (Member # 26248) on :
Bea, Its a new day, A new week, Fall is in front of US.. Summer behind. Take hold of your future, let the woes of yesterday turn into fond memories.. Prepare yourself for tomorrow. Take up your armor and sharpen your sword. May the burdens and worries fall onto THE LORD. Take up with new strenght and Pride, Focus on yrs down this Path The Lord has made, With Steve. Pour your God given Love into this. As you meet with the group of advisers Include Jesus in your meeting. Ask Him to be present in that room.. Look around and Feel His Spirit. You are at a point of Faith and Love. HOPE will preceed with VICTORY. You will never be alone NEVER. For Steve... For God's Will be done. Find that spark of rejoicing and fuel it. Onward with More Strenght then you Knew before. Amen and Good Morning.
I am not God, I am a God Fearing Man. I am a sinner, and Jesus arose for (us) Posted by beths (Member # 18864) on :
Just wanted to say I'm thinking of you and sending prayers
Posted by philly78 (Member # 31069) on :
Still praying for you and Steve.
Posted by seibertneurolyme (Member # 6416) on :
Update # 9
Payne you certainly have a way with words.
Hubby's LLMD asked me if they were trying to kill him half jokingly a few days ago. Sometimes you do have to wonder. Steve just can't seem to get a break.
All tests results negative so far as to the original cause of the pneumonia and lung failure.
Findings so far -- Steve developed thrush from the steroids which was apparently drug down into his lungs when they did the bronchoscopy. He is on 100 mg IV diflucan for that.
The bacterial pneumonia is the result of 2 common G.I. bacteria -- specific strains of klebsiella and enterobacter (don't have my notes in front of me).
Working hypothesis is that either during the bronchoscopy or the intubation Steve aspirated and the bacteria from his stomach got into his lungs. That explains the worsening of his pneumonia since he did the bronchoscopy and was put on the ventilator. The IV topramycin and IV zosyn should cover those 2 bacteria.
The culture of the PICC line grew out a common bacteria -- staph epidermis. They think that the lab contaminated the speciman since his blood cultures are negative. The IV vancomycin should cover staph if he really has it.
The 2 pulmonary docs are not in agreement on his diagnosis. One says ARDS and the other one thinks fibrosis I think.
Don't think they actually scheduled a meeting yet and I am not sure what direction to go in.
Plan right now is to treat the pneumonia for 8 - 10 days (has been 2 days already) and then try to wean him off the ventilator.
His platelets had gotten down to 110 so they held off on heparin and platelets went back up to 120 I think.
WBC down to 20,000 but still spiking fevers up to 103 or so.
Also on the positive side -- no change on xrays. That means he has been stable for 3 days now without getting worse.
Breathing is still a major issue. Stats nosedived -- pulse ox down to 77 -- when the nurses turned him over in bed. Heart rate also slowed way down.
He had one episode overnight when his heart rate fell into the 40's that had them worried for awhile.
Thanks to LymeNet members Steve got 19 Get Well Cards today. He had received 3 each on Wednesday, Thursday and Friday last week. He is less sedated today but not enough to open his eyes. As soon as he is more alert I will start sharing his mail with him.
Think I will bring in some of his classical music tapes for tomorrow -- I forgot today. Plan is to keep him sedated and comfortable for now and just wait and see.
They adjusted his steroid dose back down again. Going up and down so quickly is not helping Steve in my opinion.
All viral tests for pneumonia negative so I am almost positive I can't convince them to add an antiviral.
That's about it for now.
Got to go.
Bea Seibert
Posted by Sammi (Member # 110) on :
Bea, thanks for the update. I am glad that Steve is stable, and I am praying he will be improving every day.
I am thrilled he has received so many cards! We are all praying and pulling for your both. We definitely understand what you are going through.
Prayers continue.
Posted by gatorade girl (Member # 24896) on :
Bea are you still accepting cards AT the above address!?
Posted by Dekrator48 (Member # 18239) on :
Praying and praying and believing!!!!!!
Posted by Rumigirl (Member # 15091) on :
Bea, Thank God that he is stable and that there is some small improvement----and that they did find specific bacteria.
I pray for continued improvement, health, and ease for Steve, and for comfort, wisdom, and strength for you. I pray for wisdom and open-mindedness for his doctors and care-givers.
Posted by kelmo (Member # 8797) on :
Thank you for the updates. There are so many who care for you.
Posted by AuntyLynn (Member # 35938) on :
Bea -
I hope you won't be too worried about that heart rate of 40. A few years back I wore a Holter monitor just to assess my heart murmer. The doc asked "what are you doing at 4:00 AM?" Answer: Sleeping. "Oh because your heart rate went down to 36."
Of course, this was without the induced coma.
Hey wait a minute, once I acutally GET to sleep ... Hmmm. Yeah, sorta comatose.
Anyway I want you to know we are thinking of you, and praying for you daily.
Posted by seibertneurolyme (Member # 6416) on :
Update #10,
Today is the big day -- they did schedule a meeting of the docs. Please pray that they will at least keep babesia in the differential as to ongoing treatment.
Steve is being moved again to a different ICU -- this one is the medical ICU and has docs on the floor 24 hours a day. They consider Steve to be still in sepsis but no longer in septic shock. I know he is fighting all he can, but the eventual outcome is guarded at best at this point.
I feel I owe it to Steve to at least get the medical records changed to reflect that he did have a confirmed case of babesia per current CDC guidelines in 2007 -- his first Fry slide (it was a Giemsa stain but that is not written on the report! Will be contacting the lab to get a statement to include in his medical records).
In December, 2010 he still met the CDC criteria for a probable case of babesia duncani (titer 1:2048 plus specific symptoms) And in April, 2011 even after 4 rounds of quinine and clindamycin at IDSA doses he still met the CDC criteria for a probable case (titer of 512 and specific symptoms).
The lyme is a clinical diagnosis since PCR tests are not considered valid tests for lyme per the IDSA guidelines like they are for probably every other infection that exists.
I am not even going to get into bartonella and ehrlichia as those also are clinical diagnoses.
I have been told that with the move he will have a new team of docs and they will be taking a fresh look at things to see if they can shed any more light on what is going on.
So hopefully now that I have had some time to get my thoughts together I will do a better job of explaining the history and why babesia is important to the big picture -- it does rarely present with the complication of ARDS (even included on the CDC reporting form) and there is medical literature to support that babesia can cause ARDS.
The Carilion Clinic address is still the correct one. Does not need a room number.
Have decided to share the flashdrive of Steve's darkfield microscope live blood analysis done in April, 2012. Like they say -- a picture is worth a thousand words and the video clips show probable babesia and lyme (l-form).
Will update later today or tomorrow after Steve gets moved and I meet with the old and new docs.
Bea Seibert
Posted by Pocono Lyme (Member # 5939) on :
Bea and Steve, My prayers continue for you both.
I don't know what Steve's sedated with but several of these drugs can cause hypotension and bradycardia.
I remember reading a case report years ago of a female veterinarian being diagnosed with pulmonary fibrosis. Her lung function was down to 30%.
Someone mentioned tick-borne infections to her and it turned out to be Babesia. She made a full recovery with tx.
I tried to post a search I did but don't know how to shorten a url. A search for pulmonary fibrosis and babesiosis comes up with both ARDS and pulm fib with babs as the underlying cause.
Lord be with Bea and Steve and guide the medical team towards his healing. I pray this in Jesus' name. Amen
Posted by payne (Member # 26248) on :
God Morning Bea, 3 am.. YOU GO LADY !!! Hoping you have family or friends reaching out in physical support, I'll say a team player at best, as I feel for you, your gathering info. and collecting data for Steve may be a bit overwhelming on your system.. Share with steve everything you go thru.. Steve may have his eyes closed, but, I believe His mind is open in spirit and progress.. that makes the 2 of you sharing The Love, every little bit makes Good.. as in Steve the power in reciieveing your voice, your touch, and presance, Very Powerfull within Him, He still needs to know He is needed, I believe that when we are needed our adrenaline raises to meet the challenge.. As, did Jesus rise to the occasian. Bless Him and Prayers 24/7 steve is on our thoughts all day and night, as with many many others. GO STEVE ! big hug payne
PS- The Lord brings me to Prayer over His intake, meals food IV's meds..water= everything that goes into Steve Bless it with The Blood of Jesus, we're pulling for you two. kiss him for US. He is Loved. a brother.
Posted by tickled1 (Member # 14257) on :
I check every day Bea for good news. Thanks for keeping us updated. You are amazing in your fight for Steve. Glad to hear there will be a fresh set of eyes to look at things. Hoping and praying.
Posted by linky123 (Member # 19974) on :
Bea = angel in disguise. Posted by Dekrator48 (Member # 18239) on :
Praying for Steve.
Praying for you, and the meeting with the Dr's.
Lord, please reveal to the Dr's what they need to do for Steve to heal him completely. Give them the wisdom that only You can give.
Father, please hold Steve and Bea in the palm of your hand. Protect them, fill them with your strength, and give them hope and peace.
Lord, please give Bea all the confidence and the right words that she needs when she meets with the Dr's. Open the Dr's ears and minds to receive Bea's information with appreciation.
Lord Jesus, please heal Steve's lungs and all other disease in his body. Heal him with Your amazing grace.
Lord, I also ask that Bea and Steve will feel how much they are loved.
I pray all of this in the name of the Father, and of the Son, and of the Holy Spirit. Amen
Posted by baileypup (Member # 22824) on :
I second what Dekrator said....Bea, we are praying for Steve's healing and your strength and guidance.
I hope you have someone here on lymenet, who you respect to talk to live. If not, please ask someone specifically if they can call you. You need support......please know we all want to help in any way we can.
Posted by lax mom (Member # 38743) on :
I agree with linky.
When meeting with the Dr's remember, Dr's lose patients every, single day and are still able to sleep at night. (That keeps me fighting for my husband's and my health when the Dr's dismiss my concerns). You are the only one in that meeting who is personally invested in the outcome...your voice matters.
You have the support of hundreds of Lymenet members behind you.
I pray that God gives you and your husband strength to get through this moment...and come out the other side better off than you were before.
Posted by LBS (Member # 33323) on :
Uplifting you both and your family in prayer. Keep Calm, the Lord will fight for you!
Posted by BoxerMom (Member # 25251) on :
I check this thread multiple times a day. Thank you for keeping us posted.
Your knowledge and persistence are truly remarkable. It's a shame we have to spend so much time researching, deciding, correcting and advocating, when we would rather just be with our loved ones and let the doctors do their jobs.
But this is the way it's done in the Lyme world. We are more than the advocates. We are the doctors, too. Criminal.
Good luck in the doctors' meeting. I know you will present your case well. I just hope they are capable of listening.
You deserve all the credit for getting Steve this far. And you must be exhausted. Please take good care of yourself. And don't doubt anything you've done as his wife, caregiver and advocate. You have gone above and beyond. Everyone on this board is in awe of you.
I also know two people with diagnoses of pulmonary fibrosis and Babesia. At least one had pneumonia as well. It was bacterial and viral. I don't know which specific infections were involved.
Thinking of you always, BoxerMom
Posted by cottonbrain (Member # 13769) on :
Bea, all the positive energy I can muster I am sending Steve's way. Don't forget to take care of yourself too -- we are all pulling for Steve. Hang in there, hon.
Posted by seekhelp (Member # 15067) on :
Bea, I'm so sorry to read all you and your husband are going through. I can't even imagine. A part of me gets scared reading this thread if Babesia Duncani truly is this deadly. I hate to say it, but there is very little hope of identifying it via testing concretely. I had a local Infectious Disease doctor push my testing straight to the CDC. s you know, I had his same titer level (1:2,048).
They admitted there is NO good test for Duncani. No PCR existed for non-Microti strains. How frightening.
I pray someone there can help Steve regain some health. whatever he has, the resilience of this is just incredible. I personally can't fathom how any strain could have survived the utter onslaught of IV abx, anti-malarials, herbals, etc. he has been on. However, you just never know.
Praying for the best..... you are one INCREDIBLE spouse.
Posted by seibertneurolyme (Member # 6416) on :
I read the recent comments and wanted to say thanks before posting an update. I checked pubmed under the terms babesia and respiratory distress and also babesia and ARDS. Overlooked babesia and fibrosis.
LymeEd -- Pulmonologist talked to the hospital toxicologist regarding all of Steve's meds and supplements. No real hits as to serious lung issues. But as we all know not all side effects get reported and many drugs are never tested in combinations.
But the pulmonologist said Steve's lungs did not present the appearance of drug toxicity. Basically they just do not have an explanation for the original sequence of events.
Supposedly the fibrocystic changes were mild. And we always attributed those changes to babesia. Steve has had a mild nonproductive cough from time to time -- usually only happens for a couple of weeks when either starting or stopping babesia treatment.
According to the I.D. doc the staph infection from the line is very mild and only needs 5 days of antibiotics I think she said. Says that staph likes to colonize on the plastic of IV lines.
I wrote the update in the next post earlier in the day. Since then they were able to lower Steve's oxygen from 100% to 80% -- first time they have been able to get it that low in several days. Even with the continual fevers I think that is the most encouraging sign we have seen.
Bea Seibert
Posted by seibertneurolyme (Member # 6416) on :
Update #11
Continued prayers needed.
Have been told that Steve is too critically ill to even be transferred to another hospital room. Can�t take the ventilator in the elevator.
As they say there are none so blind as those who will not see. The pulmonologist is convinced that lyme is a rare disease. Doesn�t believe that Steve could be so unfortunate as to contract 3 rare diseases � lyme, babesia and ehrlichia.
For now he is stuck with the docs he has.
If he ever had tickborne diseases they have been treated etc etc.
I did eventually get them to agree to do multiple bloodslides, but as we all know most microbiologists probably have never seen babesia on a bloodslide.
All we can do is pray that Steve beats the pneumonia. They are unwilling to prescribe an antiviral as he has tested negative for all the viruses they tested him for.
On a positive note Steve�s xrays have been stable for 4 days. He continues to run fevers and has been under a cooling blanket for almost 24 hours.Very heavily sedated today.
Steve�s stepmother had a cousin drive her so she could come and see him today. She has a bloodclot in her eye and can�t drive, plus she is taking care of his father who has been bedbound since December. He had had several strokes and had a fall and a leg fracture and afterwards his dementia or alzheimer�s became much more severe. Don�t think Steve knew she was here.
They stopped one antibiotic (tobramycin) yesterday and his WBC went back up to 29,000 today. But once again they are saying it could be from the change in steroid dose.
I am not giving up on Steve � he is a fighter and I am sure he would like to prove the docs wrong. The infectious disease doc is not convinced that he can beat the pneumonia. Will not even agree to retest to see if the infections they have identified are gone after he receives the standard 7 or 10 days of antibiotics.
The pulmonologist is convinced that Steve has some underlying fibrotic lung condition and he hurt himself by taking some herb or nutritional supplement or some medication.
Yes, he probably does have some very mild scarring from the pulmonary nodules found in 2003, but they have never interfered with his breathing.
If you can�t find the answer then blame the patient or his wife. The internal medicine doc has used the munchhausen term in his progress notes.
I have given them medical documentation and medical abstracts, but there is nothing else left to do but pray for a miracle.
I can�t see that a change in docs would accomplish anything. Infectious disease is the only one who prescribes meds for pneumonia and we all know how close minded they are. I did mention that the vancomycin they were giving him and the rocephin they have added (switched to that from zosyn) would treat any underlying lyme disease whether they intended it to or not.
They say they are doing everything they can to support him and there is nothing else left to do but wait.
I did the best I could but seemed to totally strike out.
Bea Seibert
Posted by Sammi (Member # 110) on :
quote: Will not even agree to retest to see if the infections they have identified are gone after he receives the standard 7 or 10 days of antibiotics. [/QB]
Why on earth would they not retest to see how the infections were affected by the meds? They have to retest to know where to go from there.
I am happy there are some small improvements, and I hope there are more soon.
I am very sorry you both have to deal with this incompetence.
Prayers continue!
Posted by seibertneurolyme (Member # 6416) on :
i don't want to scare anyone into not treating a known or suspected babesia infection. ARDS if that is what Steve has is a very rare complication of babesia. Hubby's LLMD knows someone who required a heart transplant due to babesia duncani.
Regardless of the IDSA viewpoint all of us here know these are serious infections that do not go away with 10 days of treatment.
Especially in the early years Steve tried going without antibiotics and babesia treatment for several months more than once -- his symptoms continued to progress. So obviously for him doing nothing was not an option.
All I can say is do not ignore any significant worsening of symptoms or new symptoms -- especially when they relate to the heart or lungs or brain (encephalitis type symptoms for example). I know many tend to push thru a herx like Steve does -- but sometimes the slow and steady approach is the best. I know that usually ER visits are a waste of time and money, but sometimes they really are necessary to rule out serious heart issues for example.
All the comments and prayers really do help.
Bea Seibert
Posted by linky123 (Member # 19974) on :
Your lymenet family will be here for you as long as you need us.
Still praying.
Take care and God bless.
Posted by Dekrator48 (Member # 18239) on :
Bea, Good news that they were able to lower Steve's oxygen from 100% to 80%.
You have done a tremendous job, and that's an understatement.
You have done everything humanly possible and more. You are such a devoted wife and Steve is blessed.
I am so sorry that you subjected to the Drs' unkind and blaming comments, even in the medical record, by those who are so closed minded and uneducated.
I will continue to pray for Steve, you and the medical team.
Big hugs to you!
Ephesians 3:20(NIV)
20 Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,
Romans 15:13(NIV)
13 May the God of hope fill you with all joy and peace as you trust in him, so that you may overflow with hope by the power of the Holy Spirit.
Posted by LymeMom Kellye (Member # 24807) on :
I have been following this post for a week now and have kept you both in my prayers. I am glad for the stability and slight improvement.
But I am so darn angry! Bea you have gone above and beyond and have done absolutely everything humanly possible to make them understand and see outside the box. The research you've done and the difficult decisions you've made over the years are to be commended!
To mention Munchaussen in his records is a disgrace! How dare they? This may not be helpful right now but I want you you to know that you have always had the best of intentions and made the best decisions possible. If they would understand that and include you and your years of medical history in their staffings and treatment planning it would be so much more useful!
Continued prayers for you and Steve
Posted by Lymetoo (Member # 743) on :
Munchhausen, huh? .. I could say something but I'll try to keep my cool!! They can just go hang!
God knows that YOU are doing everything you can to help Steve. I only wish the doctors were not so close-minded.
Hugs and love to both of you! Posted by debilyn (Member # 35753) on :
My whole family is praying for Steve and Bea. Hang in there!
Posted by baileypup (Member # 22824) on :
I too have been following this post and praying for you both. I agree with the above poster who is so darn angry.
When my husband was in the hospital with pneumonia last year, we had to fight against the Infectious Disease doctor's preordained treatment protocols. They took him off of Valcyte, when his CMV test came back negative and he declined within 24 hours. I pleaded for them to please get him back on Valcyte. They reluctantly agreed, (thinking I was the crazy wife) even though they didn't believe it worked. All I could think of is I wanted him OUT of the hospital, so he could get the medication and treatment he needed to get better.
Bea, you know more about tick borne disease then all of us put together. That said, you will never convince IDSA docs that lyme is the culprit. All that matters is that you convince the doctors to somehow get Steve the treatment that you know he needs.
I know you've tried to reason with them to no avail. Now it's time you pleaded with the doctors to give him the antibiotics, antifungals, antiprotozoas and antivirals that you feel he needs? What they're doing is not working and they have no answers. It's not ok for them to just stand-by and not retest for infection and let the pneumonia take it's course.
Have you considered going to the Ombudsman or head of the hospital with your requests?
Is there a lawyer or someone in the lyme community that could advocate for you on Steve's behalf?
You have nothing to lose and everything to gain by demanding that they listen to you. If Steve does not recover, then they are going to have to answer to why they held back potential life saving medications.
I pray that you are guided to someone who will listen and hear you out. My thoughts and prayers are with you....
Posted by Haley (Member # 22008) on :
Still praying for a miracle Bea.
Posted by BoxerMom (Member # 25251) on :
I deleted my previous post, as I'd posted right after your bit of good news but before Update #11.
First of all, I am pleased to hear Steve's oxygen requirements have decreased. I hope the trend continues.
As for doctors, I'm so sick of their disrespect toward ANYONE who demonstrates medical knowledge beyond what they have acquired. They're even like this with other M.D.s!!
Again and again they place arrogance and limited thinking over the needs of patients. Their poor, fragile baby egos!
As for blaming the patient (or the spouse!!) when the case is too challenging, that is the crux of the history of medicine. It is proven wrong every time. It is the height of doctor arrogance. You'd think they'd want to break the pattern, but I guess "saving face" in the present situation is more important. Unreal.
I am so sorry for the disrespect displayed toward you and Steve. It is reprehensible. I wish you could bring suit, but you have your hands full, and nothing would come of it anyway. Doctors have way too much power.
We are all praying hard for both of you. You are an incredible spouse, researcher and advocate. Better at critical thinking than most of the docs you've seen.
We're all fighting for Steve. And from everything I've read about him, I can definitely see him fighting this off to prove his physicians wrong!
Hang in there.
Much love, BoxerMom
Posted by BoxerMom (Member # 25251) on :
Mycoplasmas, too. Various subspecies. Many seem to present as pneumonia. He was likely tested for Mycoplasma Pneumoniae, but I don't know if the test would cover uncommon/unknown strains spread by ticks.
I'm an obsessive researcher. I couldn't help myself. Maybe this is another route to go.
With love, BoxerMom
Posted by beaches (Member # 38251) on :
I am absolutely appalled that the term "munchausen" appeared in your husband's medical records. I can't even imagine how devastated and outraged you were to find this out.
In my opinion, this term is bandied about by physicians who feel threatened by the spouse/parent and *think* the spouse/parent has a bit too much medical knowledge for their liking/comfort, so they state this in the patient's chart. It is a very passive-aggressive maneuver to cast doubt on what the spouse/parent is stating regarding the patient. Ironically, munchausen has no factual basis in psychiatry so the fact that physicians are still permitted to use this term is downright outrageous.
As Boxermom stated, there is so much disrespect amongst doctors towards people who possess medical knowledge beyond their realm of expertise.
What these physicians fail to realize is that people like you have had no choice but to understand medicine "under fire" due to circumstances. No doubt you have spent an inordinate amount of time doing research on your husband's behalf for so many years. Physicians should respect this, not mock it.
I continue to keep you and your dear husband in my prayers. Perhaps more importantly, I am praying that there is a doctor who will break the mold of those before him and with guidance from above will forge ahead with a greater understanding of what Steve requires to regain his health.
You are an amazing advocate and an inspiration to so many here. Please stay strong and do your best to take care of yourself (easier said than done).
Posted by Rumigirl (Member # 15091) on :
Bea, I'm glad that they were able to reduce his oxygen.
But I am beyond incredulous that they refuse to retest for the pathogens they found before. And that they removed one abx and refuse antivirals---not to mention refusing to consider TBI's.
I was thinking also that you should talk to a lawyer. But as someone said above, you could start with a Patient Advocate or Ombudsman. But if that doesn't get swift help and a turn
around on some of these issues, definitely talk to a lawyer. If they know that a lawyer is looking at what they are withholding, they may be more likely to hop to. Do they really want a malpractice suit??
BoxerMom has a really good point about what he may have gotten from his recent tick bites. The only thing is, the tests they do in the hospital aren't likely to be the best, however, they should be done. Of course, the problem is their recalcitrance.
When you speak to the Ombudsman/Patient Advocate/lawyer, also address the negative comments in his chart, esp the Munchhausen comment! That's an outrage! What, they think that that is what has caused him to be this sick?!!
You could also give the drs an article(s) about Babesia written by the IDSA guys---Steere, et al. They've been on that bandwagon lately. Of course, ID will think that "it has been adequately treated." But what about the recent tick bites since all the tx??
Please don't skip over getting the help of a lawyer or Patient Advocate, etc., as it may be key. Not that you are skipping over anything at all!!
Blessings to you both. May you prevail, and may Steve recover well. We are all standing behind you.
PS Is there anyone who can come and support you in person? You really need that, if there is any way it can happen IMO. The stress you are going through is enormous.
Posted by beaches (Member # 38251) on :
And I hate to say this, really I do, but you could "break down" in front of the docs, throw yourself at their mercy, cry and beg them to do what you think is appropriate for your husband. Ask them if it would really hurt at this point to give him an antiviral/etc.
I am a strong woman and a good advocate (and you certainly far exceed that definition). I have NEVER let "them" see me cry. I have always kept my emotions in check and focused on the logic of it all. I suspect you are very similar to me in that regard. And for whatever reason, that is not seen as strength of character, but instead munchausen's or just being a bit$h.
I just HATE saying that you should break down in front of them for so many reasons, but desperate times require desperate measures. You have to do what you have to do.
Godspeed and God Bless.
Posted by philly78 (Member # 31069) on :
Oh Bea...I don't even know what to say. I'm sitting here crying as I read all of this. Like others I am angry at the doctors dismissal of your suggestions. I am also embarrassed. Embarrassed to be part of a health care industry that would have individuals who have the audacity to claim munchausen in a situation like this. What nerve!!!
You know why he wrote that? I'll tell ya why he wrote that....to cover his own incompetent ass because he cannot explain what is going on.
I just don't get it. The doctors don't know what the cause is yet they dismiss TBI's as being the source. Why? What is the logical reason for doing so? SOMETHING has to be causing this. I just wish they would listen to you.
Not sure if you had mentioned this to the docs but ehrlichiosis can cause pneumonia and severe respiratory failure. I found this......
"Ehrlichiosis can cause pneumonia and fatal respiratory failure.62 63 64 Cough is present in 39% of the cases, and sore throat and pharyngitis are reported in 22 to 33% of the cases. In 75% of children and 39% of adults with ehrlichiosis, pulmonary infiltrates are present on the chest radiograph. ARDS is reported to develop in 11 to 18% of the patients"
I'm no expert but this certainly seems like a possibility.
I'll continue to keep uou and Steve in my prayers
Posted by lax mom (Member # 38743) on :
At one point I had to tell my husband's Dr's that I wasn't going to let them wait until they did an autopsy to find out what was really going on...that got their attention.
There is a lung form of Tularemia that also causes fibrosis and pneumonia.
Actually there is an outstanding test for tularemia -- from Friday I think. That is just about the only thing that has not come back.
If Steve ever comes out of this I wouldn't be surprised if he doesn't remember this doctor meeting. Meeting time was moved from morning to afternoon and then the meeting room that was supposed to be used was not vacant so it was me and 2 I.D.docs, the pulmonologist and the general medicine doc standing around in Steve's hospital room having our discussion.
And yes I did break down in tears more than once. I had typed up my statement and gave them each a copy. verbally went over most of the points. Gave the nurse all of the medical documentation to include in his chart after the meeting.
As a last resort I gave them each a copy of the flash drive from April when Steve had the darkfield microscopy done. 2 of the 4 kept their copies -- who knows if they will actually look at them or not.
I had thought there was supposed to be a social worker at the meeting but that didn't happen.
All of the respiratory therapists I have asked say they think that even sedated patients can still hear but they can't say whether or not they remember. Not really sure if it is better for Steve to hear them say things like he might be on a ventilator for life or might not be able to get over the pneumonia. But at least I hope he knows how hard I tried to get them to listen
The meeting ended with the main I.D. doc saying that I had my opinion and she had hers.
I honestly haven't decided what if anything else to do at this point. Checked into a hotel last night to get caught up on sleep, but am no closer to knowing how to proceed.
Leaving for the hospital now.
Bea Seibert
Posted by tickled1 (Member # 14257) on :
This is so unfair. I hate that we are at their mercy and have to endure their abuse. How dare they say that about you! My heart breaks for you. God bless you both. Stay strong.
Posted by feelfit (Member # 12770) on :
Wow. Bea, don't let any doctor- anyone for that matter, tell you that you've kept Steve sick!! Most of us would feel incredibly blessed to have a spouse as dedicated to our health as you have been to Steve's.
How can doctors make these won-ton comments/opinions, when they haven't lived with Steve or seen his decline when he has gone off meds. Only you and Steve would know that.
As others' have suggested, you need an advocate. A social worker or Ombudsman- someone who will document their refusal to at least try an anti-viral on a man that is in very serious condition.
I agree with you, it was insensitive- that's too mild- incompetent- of those doctors to make comments as they did in Steve's presence. There is the possibility, though sedated, that he could hear. Insist on an advocate.
And what of you, Bea? Who is supporting you? Is there anyone that is able to hold your hand? I have no doubt that Steve knows how you have fought for him and continue to fight for him. No doubt at all.
Continued prayers- for the both of you.
Posted by cozynana (Member # 34270) on :
Bea, I sent you a pm. Please read it immediately.
Posted by AuntyLynn (Member # 35938) on :
Bea -
You did NOT strike out! You put those little "demi-Gods" in their place! (And it makes them uncomfortable.) How arrogant of them to think that a wife does not know her husband's medical history, better than some doc who had just met him this past week.
Would it be possible for you to chuck some vitamin C down his feeding tube? (Just thinkin') Adelle davis said she used to make a C sherbert, (frozen water and crushed C), and give it to really sick patients who were too sick to eat or drink.
I am driving to Mass today to face my own Goliath in Court tomorrow ... but I will be keeping you and Steve in my prayers.
May God bless you and guide Steve back to health!
Posted by Jane2904 (Member # 15917) on :
Keeping you both in my thoughts an prayers.
So sorry for the unfair remarks from the doctors. Stand proud Bea, you have done nothing wrong!
Any chance of doing a phone consult with maybe Dr. K in Washington or another top Lyme specialist?
I truly hope Steve's current illness improves.
Hugs
Posted by RZR (Member # 20953) on :
I am still praying.
When I was in the hospital early in my treatment, they took me off abx. I started getting sicker and one arrogant doctor told me lyme did not even exist in TN.
I took matters into my own hands and took the abx I had without telling them. I am not saying you should or could get away with doing this, just saying that's what I did.
Hugs
Posted by Lymetoo (Member # 743) on :
Still praying, Bea and Steve. May God comfort you and surround with His love and strength.
Posted by map1131 (Member # 2022) on :
Bea, everyday I read this thread and I pray for Steve's and your strength to fight the ignorance of tick borne illnesses.
No wonder those of us that have been around refer to ID ducks in such disrespectful ways.
Do not let these ducks point a finger at you. You have educated yourself for years to get to the bottom of Steve's illness.
I wish we all could be there. One, to support you and Steve. Second, to knock the ever living ignorance out of those ducks.
Lord, hear our prayers. He knows our fight and he knows our truth.
Pam
Posted by Dekrator48 (Member # 18239) on :
Psalm 143:8(NIV)
8 Let the morning bring me word of your unfailing love, for I have put my trust in you. Show me the way I should go, for to you I entrust my life.
Lord Jesus, please show Bea the way she should go.
Heavenly Father, please also show everyone on Steve's medical team, the way they should go in order to heal Steve.
We know Lord, that we can do all things through You who strengthens us.
Lord, please strengthen Bea and Steve and renew them, body, mind and spirit, as only You can do.
I ask all of this in the name of the Father and of the Son and of the Holy Spirit. Amen
Posted by Dekrator48 (Member # 18239) on :
Bea,
You are not alone in your tears.
I am crying and praying for you all at the same time.
I think we all feel like this. This should not be happening.
I hope you can feel our prayers, our love and our hope.
Posted by Brussels (Member # 13480) on :
Bea, so sorry to read all you are going through.
I don't know if you would take suggestions, but I would buy all the Sanum I could and just try a few (Staph, for example, Strep after, then Not, Pef....).
These are anti-infectious, would probably not help babesia but can help hit some of the infections, as he's got such a weak body now....
It's been years we do not use anything else for infections, except Sanum. They work much better than anything for most infectiouns. And still are not toxic.
Dr. K. uses them all the time, even for guys with ALS, to clear infections.You don't have to tell anyone you are giving him these drops.
I do wish no one would have to go through what you are going through. You're such a fighter and so is your husband.
My best thoughts and wishes to you and Steve.
Posted by Rumigirl (Member # 15091) on :
Bea, this saga you both are having to endure is unreal. The arrogance is beyond belief.
Please, please find a Patient Advocate/Ombudsman/lawyer---or combo, and get help from them. A lawyer particularly may knock some sense into them. As I said, do they really want a malpractice suit knocking on their door??
There is no earthly reason for them to be denying abx, antiviral, anti-malarial, etc. except their arrogance and ignorance. There is no excuse.
What happened with an Ehrlichia/Anaplasma test? Of course, we all know how inaccurate these tests can be when they are negative---esp an in hospital test. Why can't they throw everything that might help at this?? Instead of denying what can help. Preaching to the choir here.
ANd having the meeting at his bedside--with no social worker to boot---inexcusable.
Posted by Rumigirl (Member # 15091) on :
PS One of the things to stress with the help of a lawyer/Ombudsman, etc. is his recent tick bites (plural), so any "adequate treatment" from before could be rendered useless and needed again. I'm sure that you've covered that before, but with the help of back-up . . .
Also, with the help of such back-up, you could try to insist on outside consults with a parisitologist, Tick-Borne disease specialist, etc. via phone/internet. I'm sure it would be a battle royal to get any such thing, but worth it. These guys are none of the above.
You need a strong-arm back-up so badly. They won't listen to a lowly wife. %*!##! How about a good lawyer??
Posted by linky123 (Member # 19974) on :
I don't even know what to say anymore about these #*&@ doctors. It is infuriating that you would be treated this way at such a difficult time.
You are so well-informed, well-spoken, and have persevered when most would have folded.
Though we can't be there for you in person, we can be in spirit.
My kids are on their way to youth group, will have them pray for you too.
Take care and God bless.
Posted by kelmo (Member # 8797) on :
Bea. We're praying for you. God is not absent. I think you might have to go full out Shirley MacLane from Terms of Endearment on them.
Posted by a mom (Member # 23920) on :
Bea and Steve,
Our thoughts are with you.
Janet, Sarah and Jim from Bel Air.
Posted by a mom (Member # 23920) on :
Bea and Steve,
Our thoughts are with you.
Janet, Sarah and Jim from Bel Air.
Posted by Maya12 (Member # 36392) on :
Hello bea , I know I have not spoken with you much before but I just wanted to pass on my sympathy and prayers to you and your husband.
At a time like this I always like to think of the poem of footprints in the sand , God is walking with you
I have been following this thread and keep hoping for a turn for the better
You are in my thoughts and prayers
Posted by Andie333 (Member # 7370) on :
Hi, Bea! I've read all your posts but haven't responded. What I want you to know is that you and Steve are in my thoughts and in my prayers.
I pray this turns soon for the better, for the two of you.
Thank you again for keeping us posted.
Andie
Posted by seibertneurolyme (Member # 6416) on :
Update #12,
Yesterday (Wednesday) was a pretty quiet day.
Respiratory decided that the sodium bicarb they were infusing directly into Steve's lungs was not helping produce secretions but just inflaming his lungs more. Since they stopped that his oxygen needs seem to be less.
Someone from respiratory checks his stats every 2 hours. They draw blood gases at least 2 times per day and make adjustments to the oxygen levels based on that or their assessment of his stats. Think he is down to 75% oxygen now.
The goal is either 60% or 50% (not exactly sure) and then they would lower the sedation and try to switch him back to a bipap machine and take him off of the ventilator.
Chest xrays have shown no change for 4 or maybe 5 days now. WBC went back up again to 29,000 but fevers seemed lower and less of an issue.
The I.D. docs are saying that they will probably stop antibiotics on Friday or Saturday.
I am still uncertain what direction to go -- need to come up with a plan today or tomorrow.
Bea Seibert
Posted by Rumigirl (Member # 15091) on :
Off abx??!! ARe they out of their minds?? OMG.
Please, you need outside help here to pressure them to do the right things.
Maybe, maybe he would be well enough to move to another hospital by then, a teaching hospital. But I realize that that is a long-shot at best. And, of course, the IDSA guidelines rule at all hospitals. But there has to be a better place for him. Or another solution.
My mantra for you: lawyer/Patient Advocate/Ombudsman.
Posted by NEMOM (Member # 31370) on :
Bea,
I'm so sorry to hear that the Dr's are thinking of stopping the abx. What on earth is their reasoning for this. This whole thing is so maddening. I can't imagine what YOU are going through.
I will continue to lift you and Steve up in prayer.
Posted by payne (Member # 26248) on :
I am so sorry to ask this.. If steve comunicates ? what does HE think his body is telling HIM to do..? many times my body tells me its needs. no matter what any one says its STEVE's Call. much Faith and Hope today...
Posted by Dekrator48 (Member # 18239) on :
Praying for the enlightenment of the Dr's minds, Steve's healing, and strength for you and Steve.
Posted by CherylSue (Member # 13077) on :
This poor man has suffered so much. God, please help him.
Posted by Dogsandcats (Member # 28544) on :
So sorry. Wish I could be there to sit with you and give you a hug..
Our heavenly Father is with you and Steve. May He comfort and guide you.
Posted by sammy (Member # 13952) on :
Dear Bea,
I know that you have probably thought of everything but I was wondering, have the doctors tested or treated Steve for Strongyloides?
For some reason, I may be mistaken, I think I remember him having high eosinophils like me. I've been doing some research for myself about strongyloides since I tested low positive.
It can cause ARDS that requires mechanical ventilations, it can cause pneumonitis, it can cause sepsis (usually gram-negative bacilli), it can also cause sezuires...
Healthy people usually do not have symptoms and can carry this disease for life. If the person becomes immunocompromised, it can become life threatening.
I know this might possibly be a rabbit trail, something that does not apply to Steve. I just thought that it might be worth looking into if it had not been already. The doctors should be the ones thinking outside the box, since they are not, maybe we can do it for them.
Hugs Bea. Keep hoping. We are here for you. We will keep praying for you and Steve and the medical team.
Posted by seibertneurolyme (Member # 6416) on :
Update #13,
I am going to consider this lucky 13 -- NOT unlucky 13.
Not much time. Tomorrow is d-day. Steve had a really rough day -- fever most all day even under a cooling blanket -- highest was 103.5 I think. WBC went back up to 26,500 and the I.D. doc still wants to discontinue antibiotics tomorrow. Studies show longer courses of antibiotics are not needed for the bacteria he has tested positive for and so on. 7 days should cure his bacterial pneumonia.
On a more positive note his platelets are coming up -- at 158 I think from a low of 102.
Even before I got back from doing an errand and saw the crash cart in his room I had decided it was time to take a more aggressive stand. Thankfully the crash cart has not been used yet -- but they are leaving it in Steve's room overnight. His heart rate takes sudden jumps from 105 or so up to about 170 and he has PVC's and an arrythmia I think. So far extra lopressor seems to be working.
They had gotten the oxygen down to 70% yesterday but with the higher fevers had to go back to 100%.
I asked some of the respiratory people and they said they have seen people as sick as Steve make a full recovery. Of course they also said that it always surprises them who does or does not make it.
The doctors may have given up on Steve but the staff are doing great. They helped me get in touch with all the right people. And I owe a big thank you to Dr B who responded to hubby's LLMD who called for help. I have a plan of attack for tomorrow and with lots of prayer I think Steve can get the help he needs.
I know there are no guarantees, but he deserves a fighting chance. Until I insisted they do more cultures there were not even any more outstanding tests or at least nothing of significance.
Not only do I have to fight them on the big issues -- so far no one even wants to prescribe culturelle which is the brand of good bacteria they use in this hospital. In other hospitals I just carried one of those insulated lunch boxes with ice packs and brought in our own good bacteria, but that is not realistic in this situation. Steve does not need c. diff on top of everything else.
As sick as Steve is I am not going to do something that I can be blamed for if their treatment screws up.
But as soon as I can get him out of there I will probably seek out the best Chinese herbalist I can find. He is going to need more than just drugs to get back on his feet.
Sammy -- good memory. Yes Steve had trichostrongylus way back when he first got sick. Think that is a very similar parasite to strongyloides. Not 100% sure but I think the ivermectin he took last winter would have gotten rid of that parasite.
It is time for bed. Will update tomorrow as soon as I have anything to report.
I have been reading Steve his get well cards. He is too heavily sedated to respond. But when he gets better I am sure he will want to see all the cards.
Keep praying for a miracle.
Bea Seibert
Posted by Andie333 (Member # 7370) on :
Bea, miracles happen all teh time. You two continue to be in my thoughts and prayers.
Thanks, as always, for the update.
Posted by Carol in PA (Member # 5338) on :
I don't know if I should tell you this, but when I started reading your update and got to the part about the crash cart, I burst into tears.
Dear Lord, please give this man the strength he needs.
Posted by Rumigirl (Member # 15091) on :
Me, too, my heart jumped in my throat when I read that part! Thank God that it hasn't been needed.
Thank God, also, for your doctor reaching out to Dr. B. Bless his heart, if anyone is the right person to consult, it's him.
I don't know what your plan of attack is, but I'm glad that you have one. I was talking with my IVIG nurse today about your situation, as it is so much on my mind. She was appalled, as we
all are, and said first that you should ask to speak with the the Director of Nursing for help, but then said that you could go straight to the top to the hospital administrators, which would definitely get some action. That would be much more to the point.
Love and prayers for a good outcome tomorrow and beyond.
Posted by birdie67 (Member # 35994) on :
Sending you and Steve strength, love and prayers.
Miracles happen!!
Posted by BoxerMom (Member # 25251) on :
Sending love and miracles your way!!
Dogs sending slobbery kisses and tail wags. That is their style.
BoxerMom
Posted by glm1111 (Member # 16556) on :
BEA!!!!
PLEASE read the link that sammy posted above about the strongyloides! A DISSEMINATED HYPERINFECTION in an immunocompromised patient takes MUCH MORE treatment than a short course of any antiparasitic such as Ivermectin.
These parasites lay hundreds of thousands of eggs a day and can infiltrate and disseminate all of the organs, tissue and lungs!!
I read in the news a few yrs ago about a man in a hospital I think it was Michigan who presented with symptoms like Steve, and was on life support. They somehow discovered he had this parasite, was tx and he pulled through.
This could be why the abx are not working. Would be worth a try to bring this up to the doctors. I would be VERY strong about it until they hear you.
Gael
Posted by rera2528 (Member # 29886) on :
Bea - sending you love, hope, and strength.
Posted by seibertneurolyme (Member # 6416) on :
Quick note. Prayers are working.
On my way to the hospital now. Talked to hubby's nurse. She sounded about as relieved as I am. Hubby only had a couple more episodes of tachycardia (rapid heartbeat) overnight. His fever has gone down -- usually does overnight, but still a big relief.
This time it will not be just me and a bunch of doctors. I will have people with me in body and spirit at my meetings.
Was looking up some credit card balances and had to type in some of hubby's passwords -- they were lone ranger and superman. He is really a superman but he is not alone anymore.
Actually I think the crash cart can be useful in my arguments. I really feel like this is not just his battle but for all lyme and tickborne patients everywhere. I have done everything they have asked so far and now it is time for them to at least meet me halfway.
Bea Seibert
Posted by joysie (Member # 11063) on :
Prayers for you and Steve.
Posted by Jane2904 (Member # 15917) on :
Onward and upward Bea!!!
We are all here for you and Steve.
Sending hugs and strength.
Posted by Dekrator48 (Member # 18239) on :
You go Bea!!!!!!!!!!!!!!!!
Go to the very top if you need to.
At the top,they may feel that a lawsuit could ensue if they do not comply with your wishes and try more tests and treatments.
I am still praying and believing that God will heal Steve and give you and Steve all that you need to get through this.
Posted by linky123 (Member # 19974) on :
Still praying that God will be with you today as you take this up with the doctors.
Praying for strength and healing. Wisdom and open minds for the doctors.
Take care and God bless.
Posted by Sammi (Member # 110) on :
Bea, Steve is Superman and you are Superwoman! The love, dedication, and advocacy you give touches the heart.
I agree with you about the relevancy of having the crash cart in the room. Thankfully it was not needed and hopefully will not be, but the fact that they had it there is significant.
I am glad there are small improvements. I hope they continue.
Imagine a force of Lymenet members standing strong with you. Prayers continue.
Posted by tickled1 (Member # 14257) on :
Really sounds like the parasite angle could be valid. What harm could it do to try anti-parasitics? I'm sure you will tell them his history with that.
So glad to hear there has been some improvement!
You're amazing Bea! Keep up the good work and try to take care of yourself. God bless.
Posted by WPinVA (Member # 33581) on :
Bea, We have not had a chance to talk much but I just wanted to let you know how inspired I am by your strength, courage and advocacy, and how much I am thinking of and praying for you and Steve. You are so correct - what you are doing is not only helping Steve but Lyme patients everywhere.
Posted by lyme in Putnam (Member # 11561) on :
Good thoughts, prayers up. God bless.
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by seibertneurolyme:
I really feel like this is not just his battle but for all lyme and tickborne patients everywhere. I have done everything they have asked so far and now it is time for them to at least meet me halfway.
- IT IS INDEED!!!
-What sammy and glm posted could be the key!!
God is with you!
Posted by Rumigirl (Member # 15091) on :
You go, Bea! Go to the hospital administrators, if need be, please, please. We're all rooting for you both.
xoxoxo
Posted by lax mom (Member # 38743) on :
Praying, praying praying for you to have strength to stand up to the powers that be so that Steve can get the help that he needs.
If God be for you, who can be against you?
Posted by Littlesprout (Member # 7406) on :
I think it would be be a good idea for ALL not post passwords for our credit cards,debit cards, etc. We don't need more headaches or hardships Sending prayers
Posted by LymeCFIDSMCS (Member # 13573) on :
Bea, I almost died of respiratory failure as I think you know. I am now fairly sure it was due to babesia duncani, after reading a lot more on babs and respiratory failure and how it presents.
I am so sorry you're going through this. My case looked utterly hopeless and I'm still alive. I hope there is still that one small glimmer of hope for Steve too.
Posted by Rumigirl (Member # 15091) on :
ymeCFIDSMCS, that is encouraging! What turned it around for you? (I'm not trying to high-jack the thread, only shed light here).
Posted by LymeCFIDSMCS (Member # 13573) on :
I did a bunch of different things, Rumi -- nothing that Bea doesn't know about (we've emailed privately about similarities btwn her husband's case and mine) -- and it also was a matter of being completely bedbound, immobilized, using a ventilator to assist breathing like Bea's husband, and unable to speak for months and a very slow recovery as I fought every day for my life. I am not back to where I was before this. I barely got out alive but it does give me a glimmer of hope that Steve could too. I know they have both been fighting so hard for so long. Will gladly post another time but don't want to hijack this thread, as I hadn't been on here awhile and was surprised to see what was going on.
Posted by LymeCFIDSMCS (Member # 13573) on :
Bea, I wish there was anything anyone could do to help right now.
I want to suggest an herbal combo I'm doing now for babesia: Sun Ten's Artemesia and Tortoise Shell also called Qing Hao Bie Jia Tang.
In TCM tortoise shell is supposed to assist the herb get to "deeper" conditions -- so in other words, in that combination it helps the artemesia annua get deeper (into tissues).
It is also indicated for fever.
I have tried all of the other babs herbs but actually think the formula is helping.
I am mentioning mainly because you posted elsewhere the hospital is not giving malaria meds, which seems to leave few options but upping whatever herbs might help and I knew Steve already uses herbs.
Posted by Keebler (Member # 12673) on :
The pulmonary doctor has informed me that they expect Steve's heart to give out and for him to not live through the night.
The I.D. doc ordered one more blood slide. It is my understanding that if the slide is negative for babesia she will not empirically treat him with malaria meds.
Spoke to the patient advocates and they were trying to get I.D. docs at another hospital to review Steve's file. Like that is going to happen on a Friday afternoon.
Have one more meeting later today with the ethics committee.
My sister is coming to sit with me and should be here in 3 or 4 hours.
Even if Steve gets mslaria meds for his babesia it will probably be too little too late unless a miracle happens.
Have spoken to the Columbia Speciman Bank and they will take his brain and organs and tissues to test for evidence of tickborne infections.
Fever of 103.2 and WBC at 30,000 but they aren't willing to do anything outside of the box.
Signing off for now.
Bea Seibert -
Posted by Keebler (Member # 12673) on :
- This thread supplies key background detail.
For REPLIES, though, rather than keeping this older thread going, it may be best to move over to her most recent thread:
[ 09-28-2012, 11:27 PM: Message edited by: Keebler ]
Posted by beaches (Member # 38251) on :
UP
Posted by beaches (Member # 38251) on :
UP
Posted by aiden424 (Member # 7633) on :
Steve and Bea my thoughts and prayers are with you! So very sorry that you have to go through this. May the lord give you strength. God bless!
Kathy
Posted by seibertneurolyme (Member # 6416) on :
If anyone was worried those passwords I posted are for accounts that have been closed. So nothing could be charged against them. We are just paying down the remaining balances.
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
.![[bow]](graemlins/bow.gif)
![[sleepy]](graemlins/sleepy.gif)
![[kiss]](graemlins/kissing.gif)
kiss him for US. He is Loved. a brother.