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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posted
Prayers - hang in there
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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beths
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posted
Prayers for you, may your husband bounce back quickly
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TF
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posted
He is in my prayers, Bea.
Posts: 9931 | From Maryland | Registered: Dec 2007
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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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posted
good thoughts kitty....Bea, hoping for the best for Steve...take care of yourself too....
Posts: 3975 | From usa | Registered: Aug 2007
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Jane2904
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posted
Hang in there, prayers for you both.
Posts: 1357 | From Massachusetts | Registered: Jun 2008
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sammy
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posted
Sending prayers and hugs your way
Posts: 5237 | From here | Registered: Nov 2007
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nefferdun
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posted
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.
Posts: 964 | From san diego | Registered: Oct 2009
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Haley
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posted
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.
Posts: 1408 | From Tx | Registered: Nov 2009
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momindeep
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posted
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
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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randibear
Honored Contributor (10K+ posts)
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posted
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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posted
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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posted
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.
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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chiquita incognita
Unregistered
posted
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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posted
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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Member # 22008
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.
Posts: 2232 | From USA | Registered: Aug 2009
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Dekrator48
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Member # 18239
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
Frequent Contributor (1K+ posts)
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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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Member # 14257
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!
Posts: 2541 | From Northeast | Registered: Jan 2008
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
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: 3771 | 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
Frequent Contributor (5K+ posts)
Member # 2022
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: 6478 | From Louisville, Ky | Registered: Jan 2002
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tickled1
Frequent Contributor (1K+ posts)
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posted
I remember reading somewhere that a fever that high would kill all these bugs! Let's hope!
Posts: 2541 | From Northeast | Registered: Jan 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
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.
posted
Hope your hubby is feeling much better soon. You both have been through so much, things have to turn around soon.
Posts: 227 | From Northeast | Registered: Mar 2010
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
Bea-
Hang in there.
What is hubby doing to balance flora w/ ALL those abx?
Is it possible he has an extremely bad fungal overgrowth?
He should be taking tons of probiotics along w/ fluconazole or some anti-fungal when he can as a preventative measure.
2nd what Mike says too....line could be the cause, it may not be visible but could very well be harboring some type of infection...
Although his opinion is skewed from his personal experience w/ IV lines and so is mine. I did have one line for over 9 months w/ zero issues though, so it can be used correctly and safely for a long period of time.
Whatever the cause, keep keeping on. You are a saint.
Don't forget adequate detox, heavy metals, parasites, and the like.
I know you know all of this but I am just tacking my brain.
I only progressed once I began to treat everything pretty much all at the same time (triple abx combos, anti-parasitics, anti-fungals, chelation, intense detox, and supportive supplements)
Best
Derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
Hubby had a rather trying day today. Due to a slight mix-up in med orders his ativan got off his regular schedule. He has been having the "freezing-up" total body dystonia symptoms off and on since the first one on Friday (none in 3 months prior to that).
Had 2 of these bad spells today and each lasted for over an hour before the meds could be straightened out. The first dose of ativan to relax the dystonia made hubby extremely agitated -- never ever had that reaction before. Then he got weepy -- not normal for him either -- made me think of LymeTwister when that happened.
Next he decided to try a vicodin which seemed to trigger the 2nd spell.
In the end the doc put him on IV benadryl and IV ativan on a schedule which hopefully will prevent any more episodes.
No fever again today. The doc continued all the heavy duty IV antibiotics, but seems at a loss as to what to do going forward. He has no explanation for the high fever and doesn't really understand the dystonia either.
The doc originally was thinking meningitis, but hubby doesn't really have the symptoms for that. He does have headaches and dizzyness is worse than previously. Actually he stood up for a few minutes and got dizzy and threw up part of his lunch today.
The current PICC line has been in place for about 17 months. The prior one lasted for 24 months and we only replaced it because we were concerned about the age of the line. Hubby does both lumbrokinase and wobenzyme, but anything is possible as far as biofilm or line infection.
I am taking him probiotics from home (kept cold) and started him back on a few nutritional supplements today.
Hubby said he wished the docs could order some IV vitamin C or IV glutathione, but of course that won't happen in a hospital.
He says the IV vancomycin makes the back of his head feel better in the same way that the flagyl seemed to help. The levaquin makes his brain burn and the zosyn and clindamycin really don't seem to do much either good or bad.
I will be on the phone tomorrow trying to make some plans going forward.
I guess it was good hubby had his massage last Thursday so at least he was limbered up before all the crazy muscle spasms got out of control. But I can't help but wonder if the massage may have contributed in some way to his fever.
Had had 2 massages in the last month with no reactions, but he also had reflexology done this time. The lady seems really good -- said all his organ systems were working well except for a slight blockage in one kidney -- he has had a very small kidney stone for 3 years or so that just won't go away.
I printed out all of the messages and hubby enjoyed reading them. He even laughed over the comment about God sending him the whole cake and not just the crumbs.
This is Steve's new motto and the message he asked me to pass on to everyone.
He recently heard a sermon on the radio by the pastor of the First Baptist Church in Galax, Virginia. This is the title of that sermon.
"God's plan for your life is bigger than any of your problems."
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
i just wanted send along my prayers. I also wanted you to know you can get iv glutathione ordered and shipped to you from infuserve america. It is pretty cheap and he has a picc so.ut would be super easy. just need rx from his doc.
Good luck
Posts: 3905 | From USA | Registered: May 2007
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
Bea, it's good to get your update. I second (third, whatever) the thought that it was more than possible that it was/is septicemia from the line. With that high a fever and such sudden, severe sx?? What does his LLMD say about it?
I really doubt that the massage caused his fever (I've been an MT for decades). The dystonia, well who knows. But just the fever and whatever caused that, septicemia or other cause, could trigger the dystonia again.
But what else might have caused such a high fever? Has he had that before? I'm mighty suspicious of the line being infected.
I'm sure you know how to get the glutathione and vit. C IV. THe problem is no go in the hospital!
Sending you both lots of hugs and prayers and best wishes for a smooth recovery.
Posts: 3771 | From around | Registered: Mar 2008
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what a strong woman you are! My prayers are with you and your husband.
Please remember to take care of yourself too. As a hospital chaplin, I see many care-givers that forget to take care of themselves too.
Not trying to be preachy...just want you to get the care you need too...enough sleep, healthy food and a good support group (like the folks her) go a long way.
-------------------- My blog about my condition - http://borreliawenttofar.wordpress.com - Diagnosed with cellular activity for Borrelia, Ehrlichia, Chlamydia Pneu. Also have the herpes simplex virus. Posts: 52 | From Sweden | Registered: Feb 2011
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posted
You and your husband are in my thoughts.
Posts: 341 | From NY/FL | Registered: Apr 2010
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
Bea,
You and your hubby have sure been through so much.
You are both very strong people...obviously the Lord is your Rock.
I agree, "God's plan for your life is bigger than any of your problems." AMEN!
Praying you both have a good night's rest and wake up with renewed strength and bright hope for the day and the future.
Posts: 2188 | From Oklahoma | Registered: May 2008
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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lymetwister
Frequent Contributor (1K+ posts)
Member # 19590
posted
Bea, my best to your Husband. This disease is terribel. Perhaps he has the KPU problem. Have you ever had him tested.
The weepy stuff we all get or anything overemotional is probably just that.
You should go back and watch Klinghardts presentation on Lyme and Autism. The video is on Plantethrive.com He says 80% have it through proof, but believes it's even higher then that.
I'm on the KPU Protocol. I also found out later this evening, the excessive use of Benadryl lowered my Histidine levels and also contributes to all of this. Amazing how Histamine works as a Neurotransmitter. In all of my research on Serotonin, Dopamine, Nor-epinephrine, I never realized how big a part this can play as well.
This is much more then Lyme, but the effects of Lyme on our bodies.
Please be careful with all those sedatives.
Posts: 1227 | From District of Columbia | Registered: Mar 2009
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Both yesterday and today were very challenging symptom wise. No fevers -- but return of lots of old symptoms -- dry heaves, tremors, myoclonus, severe dystonia, bell's palsy, teeth chattering, seizure-like episodes etc etc. He actually had such a severe myoclonic jerk today that he jerked himself out of bed and ended up on the floor of the hospital room. I still can't believe that he did not jerk his PICC line out when that happened.
Obviously zofran and benadryl and probably topamax are all contra-indicated. Trying zanaflex starting tonight -- a new med for him. Will do routine bloodwork tomorrow and then evaluate treatment plan.
Plan to take 10 days off most babs treatment except for a few herbs and go from there.
Blood cultures showed no growth so the PCP is in agreement that hubby had some sort of herx reaction.
Will update more tomorrow.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Hambone
Frequent Contributor (1K+ posts)
Member # 29535
posted
Just know you and your hubby are in my prayers. I just hate that he has to endure this.
quote:Originally posted by lymetwister: Please be careful with all those sedatives.
I agree.
Bea, do you suppose it's possible that he's become tolerant to his benzo dose and is having withdrawal even though he's still taking it? That can cause the myoclonic jerks, shaking and weepiness. It is hell on earth. There are just no other words for it.
Posts: 1142 | From South | Registered: Dec 2010
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I'm sorry to hear how badly he is struggling Bea. Give him my best. All those days in the ER and no doctor can provide anymore insight? This is insane if his symptoms are that severe. What's wrong with these physicians for goodness sake?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Oh, Bea...I'm so sorry to hear this. You are both in my prayers.
Posts: 234 | From albany, ny | Registered: Mar 2011
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
quote:Originally posted by Hambone: Just know you and your hubby are in my prayers. I just hate that he has to endure this.
quote:Originally posted by lymetwister: Please be careful with all those sedatives.
I agree.
Bea, do you suppose it's possible that he's become tolerant to his benzo dose and is having withdrawal even though he's still taking it? That can cause the myoclonic jerks, shaking and weepiness. It is hell on earth. There are just no other words for it.
Not a bad idea....
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
yeah, maybe the best i to stop or at least lower his dosage... if babs is causing his sx, it would be good to add some IV B12 and vit C...
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
I don't know how you do it Bea....and your husband is such a trooper...
I pray that you will be guided to all the answers to heal your hubby.
(I never hear you complain, and if anyone should, it's you.)
Posts: 964 | From san diego | Registered: Oct 2009
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penguingirl
Frequent Contributor (1K+ posts)
Member # 28688
posted
quote:Originally posted by nspiker:
(I never hear you complain, and if anyone should, it's you.) [/QB]
I agree - you are such a pillar of strength. You are a role model for how we should all stay positive through this horrible disease.
Sending you and hubby prayers.
-------------------- Posts: 1204 | From USA | Registered: Oct 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I love the title of the sermon. Made me laugh. You are both amazing. I hope you find a breakthrough soon.
-------------------- 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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![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
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. ![[Smile]](smile.gif)
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