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: 3792 | 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: 96239 | 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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