Topic: Update #13 -- Prayers and Get Well Wishes Requested
Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
Oh Bea, I am praying, and praying and praying.
You are so strong. It must be so hard to put up with all those unflattering comments when you are so knowledgeable and concerned.
But..you know the truth, so stay strong.
Ignorance pervades in arrogant minds.
Praying for God to guide you to the right test/treatment/Dr/hospital...and of course for healing for Steve and for strength for both of you.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
We are praying for Steve too!
And for you, Bea!
You have been tops as a caregiver, and your observations are invaluable - don't let those who are clueless get to your head!
surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I am so, so sorry you are going through this--
Sending healing prayers---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
| IP: Logged |
sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
Best of luck with everything, Bea. I know you are doing the best that you can.
I guess the doctors don't know what is causing Steve's problems so they are trying to make him as comfortable as possible. These illnesses are so puzzling. I don't know if anyone knows for sure what they are or how to treat them when it gets to a chronic stage.
I read that fungus can also cause pneumonia. Have you treated for fungal problems? Just throwing it out there. I know you have been dealing with all of this for a long time now.
Take care of yourself, too. Big hug.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
| IP: Logged |
-------------------- Tick Bite: March 2011 ABX Treatment: August 2011 Diagnosed: September 2011 Posts: 137 | From God's Got This! | Registered: Aug 2011
| IP: Logged |
Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
Bea, I am so sorry you and Steve are going thru this. My prayers will be with you both and faith that God is with you every moment.
-------------------- God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.
Billy Graham Posts: 1967 | From California | Registered: Oct 2010
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
Dear Lord.. Father art in Heaven Holy be Thy Name.... Bea, I haven't been on to your suffering till of Late, Sorry, Tell Steve to RECIEVE, many here, just look at the names,and many prayer groups are focused on YOUR LIVES.. we all stand united with Angels with The BLOOD of Jesus, and this Blood gets in to the LUNGS.. Just one drop of Jesus's Blood onto Steve .. Bea, find your rock and show Steve your strenghts.. in a touch, a whisper , in your eyes. Jesus went to hell and defeated DEATH, that's been done. We Ask That The Lord knows us all and His Promises to those that ask, and we are ASKING. REST in Spirit, rise in Faith, Much LOVE payne..
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Amen!
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
Bea,
I check this website just to see how both of you are holding up. You both are very brave and are doing everything you can. Will continue to pray for both of you. I can't imagine.
I am interested in what you said about the SPECT scan. I would like to get one, but I didn't think doctors would pay much attention to it. I wonder if it would be possible that you could email me the image of the SPECT scan at some point..... at a much later date of course, when steve is back to being functional and well.
Praying that you both will be experiencing peace very soon!!!
Posts: 2232 | From USA | Registered: Aug 2009
| IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Bea,
I was thinking. Something about the thrush found during Steve's scope - and the lack of anything definitive keeps niggling at my brain.
Prayers still needed. Fever of 103 for at least 4 hours (since I have been here this morning) -- may have come down from 103.2 with ibuprofen -- and they are still refusing antibiotics or any other treatment.
They did put him on Diflucan at 100 mg for the thrush.
Cultures are still pending from the bronchoscopy -- viral, bacterial and fungal -- all preliminaries negative.
Pulled the PICC and cultured that this morning. More blood and urine cultures as well.
Checked for clot in PICC line arm with doppler -- none found.
LLMD had me ask them to double check for pulmonary embolism -- they claim CT would have ruled that out and won't do the doppler suggested by LLMD.
X-ray shows worsening of pneumonia -- but oxygen requirements are less (lowered to 7o% from high of 90% 2 days ago). Not sure how to interpret that -- is Steve improving or is the body just starting to shut down?
WBC remains at 30,000 or higher with bands of 29% and platelets have dropped to 135.
Getting very very concerned.
Still no explanation for respiratory failure or for cause of pneumonia. Everything tested so far is totally negative.
Have one long shot at another transfer to hopefully a more babesia literate physician. Waiting on Clongen blood smear results -- report has been promised today. Will probably see how they respond to that report before pursing Plan B.
Bea Seibert
3 seems to be the magic number -- Steve has received 3 cards in the mail each of the last 3 days. Will read them to him later -- for now just trying to sit quietly and not stimulate him so his body can fight.
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
| IP: Logged |
linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Praying.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
| IP: Logged |
lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
i dont understand. he is dx with pneumonia and they are NOT giving him abx?
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
| IP: Logged |
posted
Continuing to pray for some healing and answers for you very soon . . .
Posts: 331 | From West Coast | Registered: Jan 2012
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
quote:Originally posted by lpkayak: i dont understand. he is dx with pneumonia and they are NOT giving him abx?
Yeah, I don't get that either ... incredible.
They must think it's viral, but meanwhile, just let him deteriorate? Even GPs hand out abx for the common (viral) cold!
Posts: 1432 | From New Jersey | Registered: Jan 2012
| IP: Logged |
posted
I am crying real tears for you Bea as I read this. It is amazing how main stream med. looks in such a narrow minded way.
I vote for the transfer to the other doc if he will take your hubby on. I have personally moved on tons of times and that is how I was diagnosed with Lyme.
I am visualizing a protective bubble around your hubby and asking God to start healing and reveal signs as to what is going on.
Blessings
Posts: 620 | From Ks | Registered: Oct 2011
| IP: Logged |
AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Oh Bea -
Thank God they at least took the blood smear! Presumably they're looking for the Babs?
Some of the Red blood cells will be shaped llike a maltese cross if it's positive. There's a great explanation on Wiki about testing for Babesiosis - if they get "stuck."
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: 4682 | 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: 96239 | 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: 3792 | 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: 2387 | 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 |
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)
Printer-friendly view of this topic