posted
The day started off with an ER visit. Hubby had a bad dystonia spell and his PCP sent him to the ER. We had a previously scheduled office appointment so I went there first. 50 mg of IM Benadryl unlocked his muscles so he could walk and talk again (had been "frozen" up for over 3 hours).
Got home and took another dose of oral benadryl. Ate supper. Did his IV flagyl from 10:30 - 11:30pm.
We skipped 1 dose of IV clindamycin and 1 dose of quinine as we thought he was having some kind of die - off reaction to the babesia meds. Also skipped the babesia herbs today.
Anyway -- after I unhooked the IV hubby had a shaking chill. Temp went from 99.1 to 105 in 15 minutes. Off to the local ER. Temp at the hospital was 105.7 They gave him tylenol and put a cooling blanket on him.
Transported by ambulance to the other ER (from the morning) -- it is in NC and about 30 minutes away. Temp went down from 103.1 when he left the local ER to 100.6 by the time he was admitted to the hospital. Had gone down to 99.1 by 4:00 a.m. when he got into his room.
Plan is to do IV Levaquin, IV Zostryn and IV Vancomycin tonight just in case he picked up some other bug.
Don't have the bloodwork from the local hospital yet -- but this morning his RBC, hematocrit and hemoglobin were normal. All had been low 3 days ago. If they have gone low again then my guess is that he had a major babesia die off triggered by the IV flagyl.
Yesterday when he did the flagyl he ran a temp of 100.5 for about 6 hours until I gave him some Aleve. Has been running fevers off and on ever since starting the flagyl 2 weeks ago. But never above 100.5 until today.
Headed back to the hospital now so I will be there when the doc makes rounds at 7:00 a.m.
Will update later today if possible.
Hubby is on day 8 of his 3rd 10 day cycle on quinine and clindamycin plus malarone and IV flagyl and a few herbs. Not sure yet what the plan is regarding any of those meds.
If this is really a babesia or some other red blood cell parasite die off then the WA1 titer and/or the Clongen bloodslide from last June are defintiely for real.
posted
Prayers for both of you, Bea. Keep us posted.
Posts: 520 | From Maryland | Registered: Jan 2007
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canefan17
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Prayers - hang in there
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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beths
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Prayers for you, may your husband bounce back quickly
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TF
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He is in my prayers, Bea.
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momlyme
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posted
Prayers for you both, Bea!
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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"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
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posted
omg I am so sorry and praying for him....They need to stop the flagyl since it is causing him such horrible problems...There are other options I am sure...
Pray today brings relief
-------------------- Diagnosed with chronic neuro lyme 12/10 after 30 years of vertigo.2 tick bites in 3 yrs from upstate NY. Was on omincef for nine mths..zith and rifampin stopped.Remission~ All the pain and symptoms are back and I am not treating now with biaxin. Posts: 788 | From New york..queens | Registered: Nov 2010
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posted
Prayers, hugs and healing thoughts sent your way, Bea!
-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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Hambone
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posted
Give him a hug from all of us, Bea.
Tell him we are thinking of him and hope he starts feeling better real soon.
Posts: 1142 | From South | Registered: Dec 2010
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gwb
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posted
Praying for your husband and you as well. So sorry for all the suffering your good husband has endured. He's so blessed to have you as a helpmate.
I pray the Lord give the doctors wisdom and that He would give you grace and strength to continue to care for your husband as you do. I pray your husband get better real soon. Please keep us posted.
posted
Were blood cultures drawn? Could he be septic from the PICC line?
I hope all goes well.
Posts: 819 | From East Coast | Registered: Apr 2009
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Dekrator48
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posted
Bea,
Praying for your husband's recovery and for you both to feel the strength and hope that you need to get through all this.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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feelfit
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good thoughts kitty....Bea, hoping for the best for Steve...take care of yourself too....
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Jane2904
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Hang in there, prayers for you both.
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sammy
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Sending prayers and hugs your way
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nefferdun
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Praying for both of you. I am really sorry it is so hard on both of you. Remember we are all thinking about you.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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posted
You and hubby have really been through it all....
I pray that you gain insight and knowledge that will guide you, and give you the key to the cause and treatment for your hubby.
My thoughts and prayers go out to you. You both have strength and determination, and the guts to tough this out. I admire you both, and know you will find the answer.
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Haley
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Bea - I will be praying for both of you today. God will never leave his side although it may feel that way.
Does he have a PICC or a port? It sounds like it could be an infection in the PICC line. If so, that is serious stuff and needs to be removed ASAP.
momintexas
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posted
Sending thoughts and prayers to you both.
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momindeep
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Dang it! If it isn't one thing it is another! Bea, I have read your journey on here for a long time now and I feel like I kinda know you.
It will be okay, the Lord is with you both and I will ask Him that He will reveal Himself to you by thought, word, or deed...sometimes we need Him to throw us a crumb and I am asking Him to give you the whole cake!
Sue
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randibear
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i am so sorry for what you are going through. er's terrify me so i know you must be exhausted also.
my thoughts are with you.
maybe letting up on treatment for awhile??
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Sending you prayers and wishes for peace and recovery.
-------------------- We really know so little about the body and the microbiome. Posts: 261 | From Southern California | Registered: Jan 2011
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Bea, You have always had the upmost wisdom and strength for those of us suffering on this board. Know that your lymenet family is in you and hubby's corner and that we are pulling for you both.
Prayers and wishes for wellness.
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chiquita incognita
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Bea, I echo LymeMomKelley. YOu are so wonderful and what a trooper! YOur husband is lucky to have you, that's all I can say. Yes indeed we will pray for you *both* and for strength, lushness of spirit from within, lots of inner reserve and all the hope and recovery in the world! Sending best wishes, CI ps please be heartened, we are thinking of you
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lymeladyinNY
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God bless you Bea and Steve. I feel so badly - you've been thru so much. Sending love!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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BoxerMom
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posted
Thanks so much for everyone who has responded. I got hubby settled for the night and came home to sleep. We both have a lot of confidence in his PCP who covers the ER and hospital where he is.
They did do blood cultures, but they obviously do not feel that is the problem as the hospital is using the PICC line.
When comparing the bloodwork from the various hospitals and outpatient labs it is so important to look at the numbers because they all use different reference ranges.
As far as hubby and I can tell he had a major die off of red blood cells and this caused an increase in his white count as well. The doc must be thinking the same thing as he discontinued all babesia meds for now (IV Flagyl, malarone and quinine).
Hubby is weak but doesn't really seem to have any major lasting cognitive issues due to the high fever. When his fever started to drop last night he was of course shivering but they had to keep the cooling blanket on him and wouldn't even let him put on his socks. They kept telling him he needed to get cooled down so he ended up entertaining the nurses by singing the country song "Stuck in Colder Weather".
And then he told them that a good samaritan (me) picked him up off the street and brought him to the ER. I left him in the car and ran into the ER to get a wheelchair and some help. Came back to find him flat on his back in the parking lot by the car. He said later that he was so hot he opened the door to get cool and fell out. He was so dizzy and vomiting on top of that it isn't surprising that he was slightly confused.
He is on IV Vancomycin 2 times per day, IV Levaquin 1 time per day, IV Zosyn (combo of pipercillin and tazobactam) 4 times per day and remains on the IV Clindamycin 2 times per day. He has some negative reactions to a couple of the meds -- but not too severe. Sweats and tremors and some dystonia and confusion. But the fevers seem to be pretty much gone. Temp at 8:00 p.m. was actually 97.8
On 3/21 outpatient labs -- WBC 6.0, RBC 4.38, Hemoglobin 13.9, Hematocrit 40.3, Platelets 224, Total Bilirubin 1.11
On 3/25 1st ER visit 12:18 a.m. -- WBC 7.7, RBC 4.82, Hemoglobin 15.4, Hematocrit 44.5, Platelets 191
On 3/25 2nd ER visit -- missing
On 3/26 Hospital 6:35 a.m. -- WBC 10.1 (Neutrophils at 83.8% and Eosinophils at 0 -- obviously overwhelmed), RBC 4.21, Hemoglobin 13.5, Hematocrit 38.5, Platelets 152, Sed Rate 10
Based on pure numbers the bloodwork doesn't really look that bad, but the drastic changes so quickly are classic babesia markers.
See the article below -- still one of the better ones I think.
You and your hubby have been through so much. I so admire how you handle everything. Sending you prayers.
-------------------- You gain strength, courage, and confidence by every experience in which you really stop to look fear in the face. You are able to say to yourself, 'I lived through this horror. I can take the next thing that comes along.'
---Eleanor Roosevelt Posts: 748 | From somewhere | Registered: May 2010
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Haley
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posted
Thank God. Things are looking up. You scared the heck out of us.
I still think if the fever returns to consider an infection in the line. I say that because the fever spiked so rapidly.
You are a rock Bea.
Thanks for keeping us posted.
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Dekrator48
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posted
Bea,
Thank you for the update.
So thankful to hear that your hubby is doing better.
You are an incredible person and a shining example of what love and devotion is "in sickness and in health".
I will continue praying for you both.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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nefferdun
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posted
I hope he is better tomorrow. I wish he could get a blood transfusion while he is in the hospital. Thinking of you. . .
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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tickled1
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posted
Sounds like the hospital is being pretty open-minded about his aggressive treatment for Lyme and co-infections. Are they really being that good about it and they get it?
I hope he will be better soon! He is very lucky to have you!
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seekhelp
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posted
I just wanted to say I'm sorry you're both going through this again. I wish him the best with his recovery. If this truly is a die-off reaction to Babesia, that is scary as hell. I never imagined it could get that bad. Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Rumigirl
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posted
Bea, I just saw this thread. I'm so glad that his fever came down, and that he is doing better. You two have gone through (and go through) so much!!
I pray that he continues to improve, and that this herx, if that's what it is, leaves him doing much better in the end.
You should have your honorary MD by now---make that LLMD. And you both deserve the Croix de Guerre (like a Purple Heart medal). Prayers and hugs for both of you.
Posts: 3792 | From around | Registered: Mar 2008
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I hope you are having some time to rest yourself. What a scary experience!
Take good care - both of you!
-------------------- "Life isn't about waiting for the storm to pass, it's about learning to dance in the rain." Anonymous Posts: 450 | From California | Registered: Feb 2008
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map1131
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posted
Bea I hope hubby doing better today. I also pray that a piece of this puzzle is answered. Too many scarey episodes for you both.
I know you want truth and detailed explanations. No bull from anyone.
Take care, Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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tickled1
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posted
I remember reading somewhere that a fever that high would kill all these bugs! Let's hope!
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METALLlC BLUE
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posted
Sounds more like Septicemia to me, probably from the IV. Probably serratia marcescens and or staphylococcus epidermis. Levaquin or Bactrim (or both) would resolve these if that were the case. Both infections are "usually" sensitive to them.
If a line is in place long term, port, PICC etc, usually the infection will re-emerge unless the line is pulled. So, if the line hasn't been pulled and the same symptoms return, that's the likely cause. Antibiotics will not kill biofilm overgrowth on catheters, lines, etc.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
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I wish him the best with his recovery. If this truly is a die-off reaction to Babesia, that is scary as hell. I never imagined it could get that bad. 
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