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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
praises to God.. Bea, in Peace
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
So happy to hear this! Will keep the prayers coming your way.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
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.
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
When you plead the blood of Jesus, the destroyer cannot come near.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Payne -
You taught me something today.
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
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.
Posts: 1737 | From Virginia | Registered: Aug 2011
| IP: Logged |
beaches
Frequent Contributor (1K+ posts)
Member # 38251
posted
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.
Posts: 1885 | From here | Registered: Jul 2012
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
RZR
Frequent Contributor (1K+ posts)
Member # 20953
posted
Such a relief to hear Steve is doing better!
Thank you, Jesus, for hearing our prayers!
-------------------- Tick bite May 2009 Diagnosed June 2009 Posts: 2329 | From SouthEast | Registered: Jun 2009
| IP: Logged |
posted
Just want you to know I have been praying for you, though I haven't posted. Keep up the fight.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
be COURAGEOUS.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
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.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
posted
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.
Posts: 964 | From san diego | Registered: Oct 2009
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Continuing to pray with all my might!
God is faithful and I am still believing!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
Sending many prayers and best wishes to you and Steve......stay strong Bea.
Posts: 574 | From New Jersey | Registered: Feb 2004
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
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
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Seconding AuntyLynn's prayer
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
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
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
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 !
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
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
Posts: 873 | From WA | Registered: Dec 2005
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
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.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
| IP: Logged |
Jane2904
Frequent Contributor (1K+ posts)
Member # 15917
posted
Praying for positive turn around for Steve.
So sorry that things are so difficult.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
| IP: Logged |
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Praying for you & Steve. Hoping for improvements and for the doctors to be more open-minded about chronic tick-borne infections.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
Posts: 4681 | Registered: Oct 2000
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
momintexas
Frequent Contributor (1K+ posts)
Member # 23391
posted
So sorry to read all of this is happening. Sending hugs and prayers your way.
Posts: 1408 | From Tx | Registered: Nov 2009
| IP: Logged |
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
I hope that the hospital pharmacist will be included in the conference.
I'm praying for both of you.
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Hang in there Bea. So sorry for all you both are going through.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
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!
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
sammy
Frequent Contributor (5K+ posts)
Member # 13952
posted
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.
Posts: 5237 | From here | Registered: Nov 2007
| IP: Logged |
posted
Been following your updates and praying for you two! Hope he sees improvement soon.
Posts: 312 | From Utah | Registered: Nov 2010
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Been thinking of you and praying for both of you all day off and on. Will continue to pray.
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
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.
Posts: 2386 | From New England | Registered: Aug 2011
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Just checking in. Still praying for you and Steve.
Take care and God bless.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
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)
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Just wanted to say I'm thinking of you and sending prayers
Posts: 1276 | From maryland | Registered: Jan 2009
| IP: Logged |
philly78
Frequent Contributor (1K+ posts)
Member # 31069
posted
Still praying for you and Steve.
-------------------- When faced with pain you have two choices....either quit and accept the circumstances, OR make the decision to fight with all the resources you have at your disposal. Posts: 1000 | From PA | Registered: Mar 2011
| IP: Logged |
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
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.
posted
Bea are you still accepting cards AT the above address!?
-------------------- gatorade girl
"I still have Mt.Everest to climb, but I have traveled across the world and arrived at the mountain". Posts: 633 | From baltimore | Registered: Mar 2010
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Praying and praying and believing!!!!!!
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
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.
Posts: 3771 | From around | Registered: Mar 2008
| IP: Logged |
kelmo
Frequent Contributor (1K+ posts)
Member # 8797
posted
Thank you for the updates. There are so many who care for you.
Posts: 2903 | From AZ | Registered: Feb 2006
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
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.
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
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
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
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.
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
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.
Posts: 2541 | From Northeast | Registered: Jan 2008
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Bea = angel in disguise.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
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
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
posted
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.
Posts: 964 | From san diego | Registered: Oct 2009
| IP: Logged |
lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
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
Uplifting you both and your family in prayer. Keep Calm, the Lord will fight for you!
-------------------- Tick Bite: March 2011 ABX Treatment: August 2011 Diagnosed: September 2011 Posts: 137 | From God's Got This! | Registered: Aug 2011
| IP: Logged |
BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
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.
cottonbrain
Frequent Contributor (1K+ posts)
Member # 13769
posted
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.
Posts: 1173 | From USA | Registered: Nov 2007
| IP: Logged |
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
| IP: Logged |
posted
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
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[bow]](graemlins/bow.gif)
![[sleepy]](graemlins/sleepy.gif)
![[kiss]](graemlins/kissing.gif)
kiss him for US. He is Loved. a brother.
Printer-friendly view of this topic