LymeNet Flash: Please Describe your Neuro Herx

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Posted by tempe (Member # 5000) on :

My lyme symptoms have been all neuro & the first abx I've reacted strongly to is minocycline. Do the following sound like your ``brain herx?''

Twice, a few days after moving up to 300 mgs of mino per day, the following symptoms became REALLY intense: (1) pressure in my head & ears; (2) off-balanced, (3) burning & tightness in my spine, (4) fatigue & weakness (5) emotionalness, anxiety, brain fog & confusion (6) inability to put together words. It got so bad that all I could do was meditate on my breath & tell myself that as long as I could still breathe, I was ok. Even my husband thought it was scary.

When I went OFF the mino, for several days I felt worse in some ways: (1) pressure in my head, yet feeling like my brain was contracting; (2) stinging & pain in my head - like something inside was broken (3) brain fog, (5) fatigue & weakness.

After about a week OFF the mino the 1st time, I felt more energy & a clearer mind than I have since the day of the tick bite, so my LLMD decided it was a herx. This time, I stopped mino 3 days ago, and the continuing bad feelings are shaking my confidence.

Does the above sound familiar to other neurolymies?

I read on Emedicine that in some people, NSAIDS and some abx actually can cause recurring ``Drug-induced Asceptic Meningitis.'' I wish I could be sure mino isn't causing more damage.

Posted by Wallace (Member # 4771) on :

Hi

I identify with your symtoms. I am three days off and have decided I going to take a "holiday" for my brain to fully recover. My herx was caused by Samento.

Healing thoughts,

Wallace

Posted by dan1ruth (Member # 5237) on :

Hi.... sounds like herx to me. I have mostly neuro Lyme symptoms as well. Burning and tightness in the spine as well as just beneath the rib cage on both of my sides. At times during the beginning of abx cycles, I will have an intensity of my symptoms which I believe are due to herx.
Hope you get better soon.
Hang in there,
Ruth

Posted by rosespetal (Member # 571) on :

Yea sorry, that's about how it goes-
mood swings, stoopers, tired, neck back pains, numbness waves of face/extremeties, dizzy, forgetfull- TOTALLY, just all about brain maulfunction and pains to boot, and the rage of a bull on occassions... not to mention crying/anxiety before the rage begins...ohh and waves of fevers, hands trembling etc too I had.
That was me to a T pretty much, all you said.
Feel better- it will get better hang in there okay?
-Rose

Posted by graneet (Member # 3112) on :

With my head stuff i get lots of twitching a feeling of fullness. Ringing in back of head. Cannot remember stuff and concentration is nill. Emotions were so off the wall i began an mild antidepressant. I can take the boo hoos but not the paranoia.
Like everyone is mad at me or there is something bad gonna happen. Meds for it have helped.

I get headaches in back of head. Blurry eyes, Trouble chewing and tmj. The neck and back pain all the way across is horrible.
I have smelled smells that are not there. I have seen things look like they run past the outside of my eye.
I am awakened with a sudden noise. Only to find there is none.

There are many other symptoms not in the head.

You will have an up and down hill road on this journey with lyme. Trust your instincts. When your scared call your doc or go to the hospital.

Graneet

[This message has been edited by graneet (edited 10 February 2004).]

Posted by Beverly (Member # 1271) on :

Hi tempe,

I had a real hard time with Mino and it was a smaller dose. 100 mgs once a day.
I had paranoia, bad anxiety, anger, mood swings, headaches, hallucinations, and many other symptoms.

Call your doctor and let him/her know what is going on and how you are reacting to the drug.

I did feel better after I stopped Minocin, I could tell I came a long way, but I would not want to go back on it anytime soon.

Please keep us posted.

Posted by tabbytamer (Member # 3159) on :

That tightness in the spine is exactly how I would describe the difference between herxing on Biaxin & Amoxicillan and herxing on Biaxin & Minocycline.

The herxes with the Mino were quite different! Including the spine tightness (very painful--not like electric shocks in my joints as the Amox herxes).

Actually, a better way to describe my spinal tightness would be to imagine a string running through my spine and my vertebrae the beads. Then having someone pull on both ends of the string, squishing all the vertebrae together like a pearl necklace with too short a string.

My ear ringing and imbalance intensified on the Mino but went back to normal abnormal after several weeks off of the Mino.

Last week I started Bicillan injections. That herx also included the spinal tightness along with the electric achiness everywhere else and brain fog, etc. Sort of like a combo herx I guess.

[This message has been edited by tabbytamer (edited 11 February 2004).]

Posted by lymiecanuck on :

Hi Tempe,

Alot of what you describe are my neuro symptoms. I have exp. a lot of this before treatment when getting worse and some with treatment. From what I know, this is common with neuro lyme.

Hang in there, we need to take the abx to beat this thing, I have been on for a week, biaxin, amox, and will add flagyl on thursday.

It's hard, but try not to get too scared because I find that this makes it worse.

Good Luck and get well
Lymiecanuck

Posted by cmichaelo (Member # 5873) on :

How long did your herxes last?

I'm on Mino too. 200mg/day for 6 weeks now.

My "adverse" reaction to the drug started about after one week into the treatment and lasted for 3 weeks straight with some variations.

But essentially I became quite aggressive towards my family and unable to cope with things in general. Depressed, headaches, foggyheaded, muscle pains, etc were other symptoms.

My LLMD suggested I reduce the dose to 100mg/day.

I did so and most of these symptoms went away to some extent, particularly the aggression, depression and brainfog symptoms.

Many people talk about herxing after one week and then after every four weeks. But I don't experience this at all.

In fact, I don't even understand why they should be such a pattern. It makes more sense (to me) that the herx would be constant or random.

Michael