I am on Merrem 1gr IV 2 x's day tuesday and thursday , Lac. Ringers 1000ml 5 days a wk. and just added trimethoprim/sulfamethoxazole 1 1/2 2 x's day tuesday and thursday.
Last night I had the scariest herx reaction i've ever had.
I move so slow, severe musle spasm , constant rubbing my hands, seizures, clapping my hands for hours, sat up rubbing my feet and rocking back and forth, very hard to breath, slurring words when able to talk; only able to talk very few, unable to walk, and this morning urine very, very brown.
I am afraid of becoming mentaly ill, or just crazy!!!! WHAT IS HAPPENING TO ME?????????? LLMD gave me new med., it is Septra combined with another antibiotic to hit the deep infection in Basal Ganglia. Maybe because it is this is causing a mental herx?
I am very scared!
My husband got frusterated and yelled at me, but he was good and taking care og me.
please hepl
thank you
Posted by scared08 (Member # 14695) on :
i really need somebodies input please. this morning treatment not as bad, but still bad.
the abx that i just started is septra and another abx mixed together. i don't know what the other is,
i dont uederstand why no reply.
pleas help-----------i am worried!!!!!!!!!!!!!!!
oh, didn't clap hannds this am. but hands locked in fists and kept hitting them together. husband held my hnads down until i stopped
someone please advise!!!!!!!!
thank u
Posted by lymielauren28 (Member # 13742) on :
Oh scared, I am so sorry!
I don't know what to say nor do I have any advice other than call your Dr. ASAP. He needs to know immediately about the dramatic reaction you've had to this med.
I wouldn't take any more until speaking with him.
I hope this eases up for you soon, and please keep us posted.
Lauren
Posted by scared08 (Member # 14695) on :
Laurem,
I can't thank u enuogh for repling!!! It means so much to me. my feelings were a little hurt and mnay tears when i woke up and saw no replies, so thank u so much!!
it is so scary as this has always been my fear, severe brain damage and not functioning. Dr. told husband i have such severe infection and damage deep in brain. so he wanted to hit it hard---------it is.
my husband loosk at me like i'm crazy---hurts, i'm sure i look crazy.
thanka again Lauern-----bless ur heart
Posted by lymeladyinNY (Member # 10235) on :
Scared, so sorry your feelings were hurt. I notice that you mention clapping your hands, etc. I do the exact same thing when I'm herxing. In fact, I do all sorts of bizarre movements. I slap my head, scream, speak gibberish, twist my arms over my head, stick out my tongue, curl my fists, laugh maniacally, etc.
I DON'T think this indicates you will become mentally ill or crazy. I have always come out of these herxes feeling mentally pretty much the same as I always have.
I do suffer from memory trouble since getting Lymed, but I truly think all of this can clear up with continued treatment.
Hang in there!! My husband holds my hands, too, when I'm whacking myself in the head!
Take care - Lymelady
Posted by steelbone (Member # 14014) on :
Scared I hope you are doing better Posted by TF (Member # 14183) on :
If you get me the name of the other antibiotic that is mixed with the Septra, I will look up the side effects for you.
Septra itself can cause seizures, slow & unsteady movement (called ataxia), hallucinations, and other mental/mood effects.
In other words, it is one of those meds that can make people feel or act crazy. So, you are not crazy.
If you are allergic to it, it can make it hard for you to breathe.
If it causes dark urine, you are to seek medical attention immediately. So please do so.
I definitely would stop taking the new med. It could take a week or more to fully get rid of the mental side effects it caused you.
Posted by jocus20 (Member # 11576) on :
Im so sorry you are dealing with this. I would tell your doc right away. I havent had anything like this but i wanted to let you know that i am on Iv merrem 1gram 2x a day. I started a couple weeks ago. I havenet noticed anything like that. I do here and there get really jittery and have some anxiety though.
Hope it gets better for you.
Joe
Posted by lymielauren28 (Member # 13742) on :
Hey Scared, I hope you're doing better and please let us know what your doctor said!
Lauren
Posted by MY3BOYS (Member # 17830) on :
please notify md about dark urine and other effects.
the dark urine needs to be addressed by your MD. can be sign of significant kidney involvement.
post update on MD response.
hope you are feeling better now though, i would be scared too
Posted by lymielauren28 (Member # 13742) on :
Scared!! I hope you're okay, we're worried about you! Please check in and let us know how you're doing okay???
Lauren
Posted by scared08 (Member # 14695) on :
Thank you all so much; you'er all so sweet!
Joe--you mentioned you are merrem also. i did okay with just that nexcept for normal herxign. severe chills, shaking, tremors,and spsms and seizures.
it wasn't until i added the other one with it that i had this herx. i did the 1000ml of lactated ringers which is supposed to detox. also my urine got lighter and lihgter as the day went on.
Lymelady----yhank you so much for sharing that you have had similer herx! made me feel so much better. I also did everything you mentioned except for screaming.
Lauren---thank you so much for ur concern. you're so sweet!
It is so scarey to me cause as y'all knoo lyme can cause many mental illnesses. i have the full treamtent again tomarrow and if it happens again, and oh Lord i pray it doesnt, I will definitly call him!
i know how stupid it is not to call him todayy. I am ytrying so hard to at least get well enough to be with my daughter when she has my fdirst grandbaby!!!! It means so much to me!
lymelady---how long does it last, a herx kike that??
thank u all and please forgive any errors, i feel like a z0mbie,
Posted by Vermont_Lymie (Member # 9780) on :
Sorry to hear about your reaction. I got darker brownish urine while treating babs. Perhaps the bactrim that you are taking is hitting babesia? Definitely speak with your doctor.
Posted by swedish lyme sufferer (Member # 14579) on :
GOd, i can relate to this when on Bactrim DS. Get the seizure-movements too, horrible brain too!! It hits the brain infections real hard, but also, some of it can be side effects, so call your doc.
Posted by scared08 (Member # 14695) on :
thank you all again!! Swedish lyme sufferer=====did you have a similar reaction??
I have the IV running now and I took the Septra/something else. I am scared to death because I am here by myself!!! I have no idea what to do if it happens again. I tried to set up everything I might need next to me just in case; I don't know.
I am sorry that I wrote my feelings were hurt because of no replies when i wkoe up. I was raelly so emotional and scared.
There is nobody that i can takl to about this as I really don't want them to know; my friends and all.
So---thank you for being there for me; ALL OF YOU!!
Posted by swedish lyme sufferer (Member # 14579) on :
Yes. I took Bactrim DS your dose 5 days in a row in comb with Zithromax and Mepron and it scared the heck out of me.
I actually stopped because I had horrible mucle jerks, twists and other stuff going along. I was quite sure it was a herx, but since my leucocytes got really low, I paused bactrim.
But I have read brain penetration with this drug is very good, so I attribute the horrible herx to tha brain bacteria getting killed.
It just feels at it goes straight into the brain. HORRIBLE herx.
Like on Primaxin, which is also a great "killer" drug.
Good you are not alone!
(since being a single mum with 2 kids.......I have to take it a bit easy......I will start again when I have finished my babs treatment.)
God luck and keep us posted!
Posted by aricab13 (Member # 18897) on :
i am very sorry for this. I hope you are doing ok. I am going to a LLMD for my first time this Monday. So I don't know a ton about it, but I am praying for you and let us know how you are doing!!
Posted by lymeladyinNY (Member # 10235) on :
Hi Scared. For me, these powerful symptoms only last for about an hour each day during Lyme treatment. This is because my husband generally gives me valium and I end up going to sleep from the drug and exhaustion.
I get this way only at night, after a full day of trying to do too much. Sleeping through the night almost always helps, but I will likely have another reaction as evening approaches.
All of this occurs during antibiotic therapy for Lyme. If I go off Lyme treatment to deal with anything else, these symptoms tend to go away until I hit it again.
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