LymeNet Flash: Herxing, losing my mind, or dying

This is topic Herxing, losing my mind, or dying in forum Medical Questions at LymeNet Flash.

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Posted by Trillian (Member # 6857) on :

I don't know if I'm herxing, losing my mind or dying, but I need to talk.

I've been on oral abx for 2 1/2 weeks now. First week was bad- like the worst flu, sinus infection, strep throat all together, plus a truck kept running over me. ;oP

Most of the second week, not so bad. Varied from normal misery to somewhat better than normal to slightly worse than normal.

Yesterday morning was not so bad, afternoon not so good.

Today I am going insane.

I can't breathe. Feel like I have a ton of bricks sitting on my chest. Costochondritis pain plus severe congestion, coughing, can't catch my breath. Asthma inhaler doesn't do anything except make me even shakier. Shortness of breath is doing nothing to help my severe exhaustion.

Can't stay awake. Sleep should be a wonderful relief, but I have constant nightmares- more on par with "lucid dreams," seems that I'm awake but all kinds of strange/horrible things are happening. Wake up in more pain.

Even when I'm definitely awake, I keep thinking I hear a snatch of a conversation, or seeing something out of the corner of my eye- and I'm alone in the house. No pets, nothing. Keeping the radio and/or tv on does help me not notice this so much, but the noise gives me a headache.

Very very weak. This has been progressing the entire time. Can hardly hold a pen. Hand tremor, too. To the point that not only can I not write, or hold a book still enough to read it, but I can hardly keep food on a fork. I have no appetite, anyway- sticking with eating foods I can eat with my hands.

Brain fog, can't keep a thought long enough to complete it.

Face, tongue, hands and feet varying degrees of numbness.

Just need to vent.

Thanks.

Posted by Nancy-OH (Member # 3567) on :

What are you taking? How long have you had Lyme?

Is this your first abx?

Nancy

Posted by dullchime (Member # 6024) on :

Vent all you want. There are far more Lyme educated people here much more than I. The only thing I have to offer is the experience that seemed to mirror yours. In july of 04' I'd have to say my symptoms were very similar.

Nightmares, weird nightmares. Waking up in the middle of night and couldnt breathe. Brain fog that made me think I was gonna be permanently retarded or something- that was scary.

Vision-- toast. Couldnt see a damn thing, especially in the dusk time frame. Any drink of alcohol would send me flying..

Woke up one morning, just like you- tremors like crazy, couldnt type on this website to tell my problems.. hands were shaking like leaves.

To sum it all up, I really didnt see any improvements till about 5 weeks. And these improvements werent much but welcomed. You'll see in the future if you keep up the treatment that slowly these annoying symptoms and the "heart stopping" anxiety will all pass at some point.

Slowly you'll shed all of these problems.
Some will stay longer than others.

Hang in there..
It'll be a hell of a ride.

we're all here to talk if you need it.

chime

Posted by Trillian (Member # 6857) on :

Cefuroxime
Actually second abx, sort of- Dr gave me a shot of something else to begin with, before this.Got sick for a couple days with that, then actually had several GOOD days, which was really nice.

Not sure how long I've had lyme. Been very ill for two years. But I was diagnosed with fibromyalgia about ten years before that, now wondering if it's been lyme all along, and two years ago is just when the neuro and cardiac symptoms kicked in.

Posted by minoucat (Member # 5175) on :

Even when I'm definitely awake, I keep thinking I hear a snatch of a conversation, or seeing something out of the corner of my eye- and I'm alone in the house. No pets, nothing. Keeping the radio and/or tv on does help me not notice this so much, but the noise gives me a headache.

This really isn't that unusual for LD patients; some people experience full blown aural or visual hallucinations.

Nonetheless, DO call your doctor and let him know what's going on ASAP. LLMDs seem to differ widely on what severity of herx is OK -- but herxing (if that is what this is) can be dangerous and you may need to back off on the meds.

The other consideration is that you may be having an adverse reaction to the medications themselves.

Here are a couple of threads about herxing, including differing opinions and suggestions about ways to reduce/manage herxes:
http://flash.lymenet.org/ubb/Forum1/HTML/017189.html
http://flash.lymenet.org/ubb/Forum1/HTML/023699.html

Posted by lymelady (Member # 6207) on :

Hi,
I am going through the same thing, my first long term treatment with minocyline. Managed for about five to six weeks getting sicker and sicker, just taking meds every other day. Felt I was going to die. Constant unbearable vertigo, horrible back pain, bad dreams, bad sleep on and on. Felt I was jumping out of my skin. Edge of insanity.

Finally had to stop meds for awhile. could not take another day. I will take a break and go back. I do not know any other way to do it.

Five years with LD, diagnosed with babs and lyme this year. this is tough and I totally sympathize.

Hang in there and stop when it gets unbearable.
Lymelady

Posted by CaliLymer (Member # 6509) on :

Trillian,

Hang in there. I can safely most of experience what you are going through to some level.

When I started treatment, I thought my heart was going to stop becasue it felt so weak and was beating in crazy patterns. Also, had crazy nightmares of evil things around me. Very scary for sometone who has never had nightmares. It also makes you very emotional and panicky.
Be strong and remember your on the path to recovery.
It also helps to remember that alot of the dreams, emotions and crazy thoughts are just part of Lyme and not anything to do with who YOU are.

CaliLymer

Posted by lla2 (Member # 2364) on :

trillian, i'm not sure how old you are, but i just found that most of my anxiety stuff was related to perimenopause and getting on some progesterone naturally through herbs took them totally away, along with the night sweats, internal shaking etc..

I thought these were all leftover babs/bart symoms for me until i saw a midwife adn she confirmed THAT LYME had put me in early perimenopause..interesting...how it plays havoc with our hormones...

now with my herbs i feel great...

just a thought..i'm 43

Lisa

Posted by beachcomber (Member # 5320) on :

Trill:

You are not alone. The symptoms you describe didn't hit me until about 4 weeks into treatment. Thought this was going to be a breeze, kill the suckers and kick em out.

Whoa, was I wrong. Around week 4 I swear I was hallucinating, seeing things that weren't there, dreaming awful technicolor dreams, didn't want to sleep then couldn't sleep, thought I was having a heart attck most of the time. I went to the ER because I was walking into walls and my heart was racing in irregular patterns. Guess the bugs were just waking up and they were sure pissed off.

I can't tell you that it will get easier any time soon. This is a long haul. But, I can tell you that it sounds like the meds are working. I know that doesn't make you feel any better.

Buckle your seat belt and try to hang on. And, as someone else mentioned, do keep in touch with your MD. It is important that he/she know what is going on with you so the dosage can be adjusted, if necessary.

Take care.

Posted by ShelleyA (Member # 49) on :

A ton of bricks on your chest suggest bronchitis to me.............ans asthma to boot!
You may need a different antibiotic to fight the "normal" illnesses you may have....
Hope you have called your doc..........
I was recently on a great antibiotic.....should have taken care of bronchitis but it didn't....had to switch........

Posted by Trillian (Member # 6857) on :

Thanks for all the support, I deeply appreciate it.

I'm only 27, so hopefully I'm not entering perimenopause...

Doc says I have viral pneumonia. Great, just what I needed. Because, you know, life was just going entirely too well.

I started a blog, at http://maypanic.tripod.com/blog/

so I have somewhere to vent. I honestly don't care if anyone reads it or not, just need a place to let me mind wander. Feel free to visit, say if you have insomnia or something...

I'm hoping eventually to post plain english descriptions of my experiences in medical testing. Before I had my tilt table test, electrophysiology study, sleep study or addison's disease test, I had a hard time finding out what to expect, I'd love it if I could help someone else before they go thru that.

------------------
The only way to define your limits is by going beyond them.
-- Arthur Clarke

Posted by brodius (Member # 6835) on :

Just to let you know - I am experiencing almost exactly the same thing as you. In fact, I recently posted some where that I stopped taking the pulmocort for "asthma" well - I'm back on it. My heart is out of control - extreme tachycardia to bradycardia - and sensations that it is being squeezed and I can't breathe. I am finishing my fourth week of antibiotics and I fluctuate between feeling totally bizarre to feeling good. Every time I tell my doctor he reassures me that "it will pass"....My nights are terrifying and HOT -I almost went to the hospital three nights ago..Email if you need to talk and compare notes...