"Hello,

My daughter is 18 and is on her second antibiodic treatment...rocephin/zithro into the fourth week.

She has terrible rages every day...sometimes afterward she doesn't remember anything and is disoriented other times she does.

It is worse than ever and begining to scare us all including herself. We tried ultram and it did work some for awhile, but now since it quit working we are at a loss here.

She cries a lot and has a very hard time sleeping at times, she is so distressed that this is occuring and she has no control over them.

Any suggestions or knowledge would be appreciated more than you can know.
Thanks"

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Bless your heart .. and hers.

The 4th week of treatment is normally a TOUGH one and a typical time to "herx".. which make symptoms worse.

Combined with the fact she is 18.. oh my my.

I can't even imagine what I would have been like had my herxing been at that age.

First thing I suggest is to contact the LLMD.. NOW.. before the weekend.

They may .. and I said MAY.. suggest backing off the antibiotics a bit till the worst is over.. but THEY must make that decission along with you all.

They may prescribe meds to help with this situation.. but truth be known, I don't know if there is such a thing that is effective? Perhaps one of the mom's here who have been through this may be able to suggest something?

May I suggest she reads about herxes. If she understands this is NORMAL for what is happening in her treatment.. it MAY help her understand them so she won't feel like a dandelion stuck in the middle of a rose parade.

I do NOT recommend allowing this to continue without making the call to the doctor.

Herxing CAN be dangerous.. and your body.. if reacting badly.. needs to be dealt with. SOME discomfort is expected.. but YOU all should call out "UNCLE" when it is to a bad enough point that it is concerning for her.

Another little trick to try would be a focus word.

I never saw the rages coming on... and I didn't know afterwards what had really happened.

If someone would have alerted me to what was happening.. I MIGHT have been able to stop them from hitting so bad (?) or in mid rage.. but again.. I don't know because they just let me go off. "Going off" may be the ONLY release though?

But you might try to pick a happy word (in advance) and when you see this coming on.. simply say the word over and over to her.. and have her say it too.

Watermellon.

That is a happy word.. unless she hates watermellons. Say it over and over.

The other idea would be to let her go off.. and afterwards LOVE her to death! Tell her you KNOW she didn't mean what she did or said. God love those who put up with me through these awful times.

Assure her you understand and tell her over and over she WILL be ok... and you understand.

Controlling them would be similar to trying to control a seisure.. so it isn't going to be easy.. and may be impossible.

LOTS of water to drink. Flood the system to keep the die off washed out as much as possible. You might try decaf green tea.. a cup or two a day.

But my best advise is to ask the doc if backing off and letting her clear up a bit would be ok.

If she gets worse before you hear from the LLMD... go to the ER... although they probably won't understand or be able to help.. but we don't want to endanger her in any way.

And please let us know her progress.

We are here for her and we care. MANY of us have been through this... and tell her that coming out of it.. getting to the "other side"... is VERY nice.

I am up to my eyeballs in work.. so if you need anything.. here is my email address. I am not on the board much right now.. so feel free to write if you care to.. or have her write to me. Please use your screen name here so I can relate back to your post. OK?

In the meantime.. I believe our member "Mo" may have some suggestions.

If you can find her.. ask how she did in this situation. She is a wonderful mom who has been through a lot and is always willing to help others.

And mom.. please know.. during my most horrible times.. I treated my mom like a dirt bag.. for which I am still ashamed.. but she stood by me and put up with it.. and loved me anyhow.

THAT is what your daughter needs most now... and will remember forever.

[email protected]

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If you get the choice to sit it out or dance...

Hubby has hyperaccusis which is extreme sound sensitivity and is a common Lyme symptom. Ringing phones or even an unexpected knock on the door can trigger "impulsive irritability" as I like to call it.

Actually IV Rocephin by itself was one of only 2 or 3 things which helped my hubby. But to try to mitigate herxes we did IV Vitamin C immeditely after the IV Rocephin to try to get the antioxidants into the brain to stop the inflammatory cascade.

If your daughter does not take it I would suggest COQ10 as one of the best antioxidants which cross the blood brain barrier -- up to 400 mg daily.

Basically anything which helps with detox would be beneficial -- possibly epsom salts baths. Does she take oral magnesium? -- that is calming as well.

The other possibility which often causes anger or depression depending on the person is a low serotonin level. 5HTP might help with this and might be worth a trial or L-theanine is another possibility.

Hope something helps as I know when hubby gets angry he has much worse neuro symptoms.

Big hugs to you and your daughter. It broke my heart when I read your post. I'm so sorry you and your daughter are going through such a rough time.

What she is experiencing is unfortunately not unusual. Seizure-like rages, disorientation, severe depression, insomnia and new psych symptoms are common with neuro lyme. And you are right; it is VERY scary.

Civilians who haven't lived through it first hand are hard-pressed to understand but there are many here who know exactly what you are talking about and you are not overstating the situation.

Some people experience their very first rage/psych symptoms only after starting abx treatment. And 3-4 weeks into IV for lyme is textbook for the mother of all herxes.

Those neurotoxins are TOXIC.

After that, some people get dramatically better and continue to make good progress.

Others seem to be in the trenches for a long time, with chronic symptoms and episodes when they exacerbate further.

Those episodes can align themselves with the female cycle and from what I understand, can be notoriously rough for teens.

So, all considered, your daughter has the dubious distinction of being right on schedule, poor thing.

What TC said about the possibility of backing off the abx a bit also occurred to me as I read your post. Were you able to speak with her doc yet?

My little boy has neuro lyme and became a raging sobbing psych patient the 3rd week into rocephin. Prior to that no psych or temper issues ever. The episodes continued throughout his treatment. After a year of hell we are on an abx holiday.

I have to say that if I could do it again, (and I will unfortunately be doing just that since he is still very positive and symptomatic for lyme)I would follow a very
gentle, slow, flying below the radar approach to the abx. But that's just our situation which is longstanding.

Another important consideration mentioned is the possibility of a co-infection. Bartonella is the one so famous for playing havoc with moods. But any of the others can too and may be falsely negative on testing. A "must" on the list of things to check out here.

I also like what Tree and others said about protecting and gentle flushing of the system. Those die-off toxins are lethal and in our particular experience, more dangerous than the unadulterated version.

Another (and perhaps the most important)thing TC and Tree mentioned that I also endorse is de-stress and rest!!! It is soooo easy to forget this one.

She MUST be extra gentle with herself physically, mentally and emotionally. And that of course goes double for you. I am sure you are expecting so much from yourself to fix this.

This disease is crafty and seems to be easy to underestimate. One of the hardest things to deal with is adjusting to so many new and changing limitations and challenges.

This is even harder for teens and moms who already demand so much of themselves.

So my advice is the do the "easy does it, you're doing great, TLC, chicken soup, warm epsom baths, tucked in, don't worry about anything, I'm so proud of you" version of getting better.

For BOTH of you.

Please keep us posted

love,
andie & JC