lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi all. I'm being treated for Lyme meningitis and one day after my first infusion of rocephin I fell off my bed later on that night.
I had horrible vertigo and couldn't get back on my bed. Later I started vomiting and that lasted two days. I'm still sick but sleeping all day and taking anti-nausea medicine this past hour has really helped.
My question is: Do you think the vertigo and vomiting have anything to do with the meningitis and rocephin treatment? I don't dare ask my doctor because she was VEERRRYYY reluctant to give me IV rocephin.
The good news is my head and neck move again!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
It sounds like a herx-caused by iv
If it was pills id suggest you take smaller dose and ramp up
With iv i guess you cant control that and i think you are smart notto tell doc
I never got iv approvrd
Maybe detox will.help
I hope others with iv come along. Good luck
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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Dogsandcats
Frequent Contributor (1K+ posts)
Member # 28544
posted
I remember getting nausea, etc from infusing too fast.
I slowed my drip down.
Don't know if this would help you since it didn't start til later in the evening.
Hope the next one is better. Try dry brushing your skin and Epsom salt baths, if you have help!
-------------------- 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
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I would definitely tell my doctor about the way you have been feeling. You might need a smaller dose to start. You can give her the good news that your head and neck are now able to move, but make sure she knows how very sick you are feeling. She can adjust the dosage and you will be able to tolerate the treatment better. Good luck!
Posts: 2386 | From New England | Registered: Aug 2011
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
You must contact your daughter and let her know how you are feeling. Sometimes an allergic reaction to a medication can cause similar symptoms as well.
Posts: 1748 | From United States | Registered: Dec 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Do you infuse every 12 hour or every 24? Do you mix it yourself, or does a nurse do it for you?
Are you doing 4g, 2g, or 1g?
Can you go to a lower dose for the next day to see if it is easier?
If you are doing 1g per day now (the lowest), can you infuse over an hour, instead of 30 mins?
Or do 1g every 12 hours instead of 2g in a single go?
When I increased my gram dose it was stated very very clearly to me to be sure the infusion rate was done slowly.
I understand why you don't want to tell the doc.
But if it happens again you should.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
I'm no doc or nurse but the insert in the box of rocephin vials has info also dr.b's guidelines.
Maybe nausea or vertigo is as a side effect/allergic reaction on that insert?
If your eyes aren't good, ask your hubby to read-i swear it is written on onion paper. Haha.
Are you on actigall? Urdsodiol? To protect your gallbladder while on rocephin?
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Thanks, everyone, for your responses. I've had rocephin before at the same dose, and never had a herx like this one. Ellen101, I don't think this is an allergic reaction because I've had severe allergic reactions before and they felt nothing like this. Now that I have a sore throat, too, I think I picked up a bug at the hospital. It seems like I can't win!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi GretaM, I read your response after you posted. My husband and I infuse every 24 hrs. with pre-mixed 2 grams. We just have to hook up the bag.
About my gallbladder - it's long gone after a former LLMD decided to push ceftin too hard without giving me ursodial. She honestly almost killed me! Before I could get any dingledorf doctor to actually DO something for me, my gallbladder nearly burst from sludge.
Thanks for your response!
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
As vertigo and vomiting are known symptoms of meningitis, it would be entirely possible for this to be a Herxheimer reaction, with your symptoms getting worse before getting better.
There are some abx that didn't cause a Herx in the past but do now when I take them again. My gut felling is that this is a Herx, but I'm not a physician.
To change your dose or frequency of infusing, you'd unfortunately have to tell your doc so that you'll have enough of the right supplies, unless of course you're mixing your own Rocephin at home, in which case you could just draw up half the Rocephin to mix into each ball/bag ect.
Absolutely stress the good effects you've already seen! Just tell her you fell like its too much too fast. You may even have to explain to her what a Herx rxn is if she's not a LLMD.
Also, look into detoxing options to calm down the Herx rxn such as cholesstra (sp?) activated charcoal, liposomal or IV glutathione ect.
Wish you the best. Poor thing, you sound miserable!
-------------------- Ellen _ _ ___________ _ _ lyme disease dysautonomia Chiari malformation anxiety Posts: 72 | From Birmingham, AL | Registered: Dec 2013
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Ellen, you would think that after 11 years I'd know that vertigo and vomiting is a symptom of a rocephin herx for treatment of meningitis.
I feel better now, though still bedridden because I fell so much trying to get back in bed with the vertigo. (I fell out of bed twice and could not get back in, repeatedly slamming myself onto the hardwood floor, ouch!)
So I think I will rest and detox with burbur while I wait to recover. I am on pre-mixed rocephin and it's really helping so I don't want to rock the boat.
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
So sorry to hear about all of this but I am all too familiar with it. I never vomited but I would have these weird seizure type things and the persistent feeling that I was dying.
I definitely couldn't get out of bed and I've been dealing with this symptom that some on here call derealization.
For me, until I started detoxing/cleaning up the drainage system (kidneys, lymph, liver) I was only getting worse and no amount of antibiotics was going to help me.
It was a rough tough major climb up a huge ass mountain, like many on here, but I finally found the right path for me and it's been improvements slowly but surely. Like the turtle I am..haha.
Hang in there and maybe help support them drainage systems. Just giving my support.
Posts: 183 | From ... | Registered: Oct 2011
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