I'm not on very much medication - nothing that I think would cause those symptoms, so this puzzles me, as well as concerns me about possible implications.

I go back to my neuro (LLMD) tomorrow, and need to prioritize my topics with him since he doesn't have all day to spend with me...altho it would be a lovely idea if I could just keep him captive until he answers ALL my questions and concerns.

Neuro on first visit said I have frontal lobe disinhibition, meaning I now have a valid medical excuse for saying inappropriate things at any given time! It's like I'm drunk, only it doesn't cost me anyting and I don't have to throw up because of it. (what a bonus)

ALSO - as I've mentioned in previous times, my twitching and tremors seem to be gaining in frequency and sometimes intensity. If I had pride, I might be embarassed - but I'm too busy making a fool out of myself with seemingly voluntary things.

And another thing - one night I woke up feeling like I was having a seizure. It was a very fluid type event with my whole body involved. Naturally I was half-asleep and so I couldn't differentiate whether I'd actually had a true seizure (never have before) OR if it had been a dream (or nightmare)!

I tried to actually re-create the episode and I purposely jerked my body around in bed(if I were a man - that would really sound 'inappropriate'. I'm not - so it's funny.) Anyway - I couldn't reproduce the experience. It was just really weird.

So anyone else with LD who's got various hallucinations or dreaming they're having a seizure?

I won't ask if there's anyone else here with frontal lobe disinhibition, often doing & saying inappropriate things,...cause I think I already know the answer.

Blessings,

I am not laughing at you.

God, you have a great way of making terrible things freakin hilarious...

That being said, I have also had auras--
hallucinatory smells that precede a seizure.
For example, I may smell gasoline or oranges
in my bedroom. Neither are physically there. It is thought that I have temporal
lobe seizures. Auras--smells, light, sense
of agitation often precede an actual seizure
event.

This started after staying in a castle in Ireland that had the front steps lined with white lilies, but that was 2 years ago. I still get spells where I smell them.

But there are types of seizures that have altered perceptions involving the senses as well. I have so many bizarre nighttime occurences (and yes, I'm not a guy either so I can say that comfortably)!.

I've also seen things that were not there...such as an ugly alien cat following my cat and a huge spider on our ceiling fan...only we don't have a ceiling fan. All of this stuff happened at night tho so it may be that lyme is involved but there is also that part of sleep where you are kind of awake that these things can happen. One night right before I went to sleep I left my body and floated over it.
As far as seizures go I have a couple different odd things going on. When I'm not on antibiotics I have a seizure type thing where my head feels weird and then both feet turn inward like a huge cramp and then that sensation travels up my whole body.

As for the auditory stuff - that freaks me out even more. I sometimes could swear someone is walking on my roof at night wearing...army boots. No, I don't think it's my Mom...but it sounds like SOMEBODY! And who can sleep when that's going on? (Which if I'm suffering from sleep deprivation - I'm thinking that's only going to worsen the problem.)

Thank you for being brave enough to post....I'll be printing this one out so I can read it again when I'm getting freaked out at some point...like tonite.

Happy smelling,

My little boy has been seeing a man dressed in black. Happened a few weeks ago. Monday morning--right after my grandmother died. He told me he saw a man in black in the living room. He also hears voices. For him it seems to be worse when he is herxing.

------------------

Ah, you sweet, sweet thang!

I'll pass on the info to my husband that I actually have men fantasizing about me on the internet....

I'll wait for him to look totally alarmed before I spring it on him that it's only because of the desire to emit the SBD's all day long.

You're a real charmer, Tony. Why, I think I'm smitten!

About a year ago before I was treated, I was in your current state of being. I would have been able to write your post almost word for word. Only you are such a good writer, I know it just wouldn't have come out the same.

Anyways, about the hallucinations, etc....
Most of my weird stuff happens upon awakening.

I got the auditory stuff. Thought there were dogs barking outside my house...like 100s of them.... I would have sworn that they were real. But then, the sound slowly turned to people clapping. I thought I was loosing my mind.

Believe me, you aren't dreaming that you are having seizures...you're having them.
Did you every see the movie "Airplane". Where the guy is plugging and unplgging the wire into the wall socket...and the runway lights are going on and off.
Well, I woke up one morning and felt if my brain had a power cord like that, that someone was plugging it in and out. I was literally being powered on and off repeatedly.

The fun doesn't stop until after about 4-5 months of treatment. Then it happens less frequently.

After a month or two into treatment, I woke up feeling like I was laying on a washing machine in the spin cycle. I just kept shaking...I asked my wife to touch me and asked, "Am I vibrating?"

And thanks for the 'good writer' comment - but no good writer would end a sentence with a preposition, and then start another one with a conjunction. I just type fast and I used to be reeeaaall smart....now I just like to say stupid @#$% in an attempt to make myself laugh. If others happen to enjoy it, they should take note to examine the company they're keeping!)

So - I'm not exactly happy to hear all this crap - but again, at least I'm not in the hallucination/seizure boat alone.

It never occured to me that a seizure could be something other than the full-blown epileptic seizure that you see on TV. (Yes, that's where I get all my medical training...TV. Would you like for me to diagnose something? Or perhaps offer medical advice of some kind?)

I"m getting sidetracked again...

Several weeks ago, I also had a moment when I had been in a lot of muscular pain - you know when the knives are stabbing you in the ribcage....

When I stood up, all of a sudden I had this freakish electrical storm feeling go up my spine. It was the kind of experience where I felt my eyes rolling back in my head because of the pain. It only lasted a second - Thank GOD!

But I'm wondering now if that could be some kind of small seizure - as opposed to the neuro-muscular problem I thought it was.

I'm seeing my LLMD this afternoon. I bet I'll be there quite awhile today.

Thanks for your candor...even though it depressed the crap out of me. (just kidding - I was already depressed.)

I have olfactory halucinations that aren't all sweet and lilly-like. I smell dead stuff and moth balls.

My auditory halucinations are nice. It's the sound of a radio playing really far away. It's like on a summer afternoon when all the windows are open and the music is coming from a house down the street.

I have peripheral visual halucinations where I see mice running across the room out of the corner of my eye. There are also birds or bugs swooping down at the side of my head. I've also seen my blinds "blowing in the breeze" when no breeze is present and little speckly black dots flicking all over my visual plane.

My MRI shows 2 leasions on my brain. I'm figuring they have something to do with all of this. The lesions are "indicative of Lyme Disease" according to the report. So I put 2 and 2 together and say that it's Lyme induced.

My LLMD wants me to report the peripheral hallucinations to my LL Opthomalogist. I can't see taking his time for that though.

I'll mention it in my regular appointment.

Take care and let us know how you appointment went.

I thought I saw Elvis in my closet one night. Found out it was his birthday that week and it kind of freaked me out a bit. I had a migraine that just wouldn't let up - visual aura and transitory numbness - went to the ER and they gave me heavy duty drugs so I think this is what was helping to trigger this.

I will say I have had the weird smell stuff too. I smelled farts all the time and assumed it was my husband who would then get offended that I would imply he had let it - well normally he does all the time so how was I to know.

I also occassionally smelled perfumey stuff.

that according to my description that I'm experiencing "classic" temporal lobe seizures ...which is caused by the Bb and not an indication of epilepsy.

I kind of got a little upset, hearing the word "seizure" - I mean, it's one thing to think it - but to hear a doc SAY it is quite another.

He said fine, "We'll call it temporal lobe discharges."

I told him that sounded worse because that makes it sound like my brain is full of pus.
I mean - GROSSS!!

He wants me to only take 1 Biaxin a day now (slow down the die-off); and has increased my dosage of Neurontin. In fact, he indicated that if I had NOT been on Neurontin, I would probably be experiencing even more severe episodes.

Lymied - Thank you for admitting you smell farts too. That's not the easiest thing to admit to a group of people you don't really know.

But it kind of makes me think of that movie...the one with Bruce Willis and the little boy that says, "I see dead people"...but in my movie, my character will be saying, "I smell farts".

So if I write it (a movie) - you will come?

Thanks all for a very sensual discussion.

He said fine, "We'll call it temporal lobe discharges."

Ya know DR---(and why do I always associate your initials to Denise Richards?)

I do believe this was your fine doctor's way of saying you're having brain farts. The word "discharge" has been known to be associated with flatulence. Among many other associations, but in your case, I'd take it the way nature intended it to sound, and since you smell them, and not hear them, I do believe you should just let your doctor call it the way he wants.

Seizures are scary. I think because we tend to try to connect the dots: I seize, therefore I lose control. If I lose control, then what will the world (or, my world) come to? Will I be able to live my life? the way I want to?

As this world has now come to see that when we lose control of our bodies, other people can now take control of them. Whether we want them to or not---yes, I'm referring to poor Terri Shiavo.

So, not to get too far out there with this association---seizures can come in many forms, shapes, smells, and sizes. Not just the shake 'em up kind where we awake to find ourselves on the floor of the supermarket drooling and soiling ourselves while the paramedics load us up and take us away.

I myself have optic migraines-the little clear squiggly lines, but without the killer headache after they pass. I am thankful I not get the actual headache, but for the 20-30 minutes that I cannot see (like tunnel vision-not safe to drive with) I have to literally sit down and take a breather until they're gone. They are inconvenient, and were scary at first, but I now accept that I get these and go on with life.

If I were you, I would be thankful that your mystery farts and boots on the roof are not physically incapacitating you, DR. And hope and pray that they don't trigger the scary shake 'em up type of seizures. And that your meds will help to get them to stop.

And. Well, lets all try to do this for ourselves anyway-get a living will/trust written up. Cause you just never know when we will take a turn for the worse, and someone else will be making some decisions for us. It's now happened, and we all got to watch the horrendousness of it. Until it ended today, and how sad it did end.

There's a tangent for ya.

I am thankful - and thank YOU for reminding to stop and acknowledge that.

I am thankful that I have a doc that's smart enough to NOT start me on my Babs treatment until I'm not quite so toxic - because adding Mepron now might only make my brain "fart" a little more and trigger more severe episodes. So yes, I am thankful.

I'm also thankful that I have this board, and all you fine lymies here to teach me, support me, and laugh with me.

I'm thankful there are people like you with such good hearts - and that you're not afraid to express what's on it.

Blessings,

but the most vivid and real halucinations came after i started a drug called Zyprexa to help me with severe insomnia. i stopped the zyprexa, but the halucinations still persist.

the ones in the dark are the most realistic and disturbing. stuff like these multi-colored dome type thingys with trailing spiral things hovering on the cieling above my bed. hearing wierd wierd music at the same time. kind of curious and fastenating until one of the bright colored dome things comes at me menacingly and the others follow suit and the music gets more frantic.

or zombies in my closet that i know are not real but look very real to me, that form and the lunge out at me. pos thing is that when my son decided to be a zombe for halloween, i knew exactly what fashions zombies prefer and so knew how to dress him up.

and fierce looking , giant pink birds with large , sharp beaks swooping down at me. so many nites, i spend in the living rm with a dim lite on. but if i look into the dark of the fireplace, see tiny skeletons dancing and all kinds of creep stuff writhing.

or looking at the dark window in our front door and see something terrifing staring back at me. but even closing my eyes, i sometimes don't have any control over what visions flash into my brain. and my also simultaniously hear something frightening talking in my ear as if it is just a foot or so away.

and coming home at nite and seeing a giant bug on the lawn diagnally across the street start out after me. i do sometimes get halucinations in the light, but they are not usually disturbing or as realistic.

the auditory stuff can be frightening, or just sort of pleasant but strange. and i have psychic experiences. hearing a Todd Rungren song play over and over, often stopping in the middle of the song only to restart. i check and see if a radio has been left on. i hear it clearly coming thru the airconditioning vents, but my husband hears nothing.

then i get up the next morning, and my huband informs me that he just saw listed in the newspaper that Todd Rungren is playing nearby that nite.

and years ago, the nite before we were going out to a concert. the radio is stuck on WPRB in Princeton ,NJ and playing a whole concert from a band i never heard before. i want to switch the station and see what else is on, but there is no radio in our room.

so i just chalk it up to "i'm insane", and lay back and listen to the whole concert. then we go to the show the next nite. we did not know there was going to be an opening band, but there is. the same band i heard the night before! and i was able to predict what song they would play next (an obscure band playing there on songs that until my halucinary experience the nite before, i had never heard) and i could predict their banter between songs. very wieird!

and, this has only happened just a handful of times in my life, but i think i hear someone ask me something, so i answer them. they give me the wierdest look, then tell me they were going to ask me that , but didn't yet. how did i know what they were going to say? last time this happened, was i think about a year ago. i heard my husband ask me something and answered before he asked me. but he is used to stuff like this from me. i predict things.

i don't know if i have siezures or not. i have lots of bizaare neuro stuff. i was seeing a supposedly lyme lit neuro a few yrs ago, but he wasn't really treating me or doing all the tests he should. i think just using me as a research project. and not recording just how sick i was in my records. and i'm not sure even realized just how sick i was/am.

i have a very good llmd now. she is not a neuro though. and can't get me i.v.'s. and i have been having so much trouble keeping meds and supplements down. i have blue cross/blue shield. and i have been too unpredictable healthwise to get all the tests done that i need. i need stuff like magnesium shots, and need to go to an in network dr for them due to costs.

i need a local g.p. who is lyme sympathetic, but i dont know who to go to. the drs i have gone to around here have been horrid to me and they all seem to know each other. i also need an OB/GYN, as the wife of a UPENN dr who major abused me when i was at death's door, has joined the OB/GYN practice i was going to. and i have other complaints about them.

because i throw up so much, i need to see a gastro-enterologist and have tests done. i did see one an hour away in NJ that ws good, but too far for me. i never know if i am going to be too sleep deprived to drive, or throwing up too much or otherwise too sick to make appts. my husband has his own buisiness and can't take off to take me to appts. and i don't even know what hospital to go to. i have gotten bad treatment from local hospitals.

Your post scares me a little...not for me - for you.

YES, you need a good regular doc - perhaps a Lyme sympathetic internist?

Let your fingers do the walking. Find out who Blue Cross will allow you to go to and sit on the phone all day & ask the receptionsists if the doc knows about LD.

OR better yet - ask your new LLMD for some suggestions about a regular doc

AND

GET THEE TO A NEUROLOGIST!
Your bizarre hallucinations could be potentially dangerous for you & your family. It could also be an indication that something more serious is going on.

You need some kind of treatment for this!

You say that you're vomiting a lot - that could really throw your chemical balances off - and I'm not just talking about the happy chemicals...but simple things like potassium & sodium. I know that people DIE if their potassium goes too low.

Caryn - PLEASE make yourself a priority. And SEE yourself as a priority.

I understand your hubby can't take off everytime you need to go to the doc - but if you are severely ill - HE MUST do it - of find someone who can. YOU deserve good medical care. Find it.

Keep us informed.

Blessings,

i guess we are just so used to me being in such bad shape for so long and i have come a long way. i do now have the name of a neurologist in CT whom i think takes insurence and although not lyme literate, is very interested and otherwise a good neuro. i will make the appt.

the throwing up does scare me. i was a lot improved for a while, but trying to go back on mepron zith , has gotten worse. i promised my llmd i will make an appt with a g.i. nearer to where i live who takes insurence. i'm wondering if Hannamin (sp?) hospital in Phila. has a reputation good or bad regarding treatment of lyme patients . i have put off some med tests, because i do not know what hospital to trust.

i know the hard way not to go anywhere near a UPENN dr. i've been to horrible drs at st. mary's in langhorne also.

and mercer hospital in trenton, NJ. ER dr nasty, bad treatment, and despite me explaining i had lyme (and showed him a photo of me with the bullseye rash we found we had unwittingly taken and my abnormal brain spect scan) and told him corto-steriods would be deadly, he put on my on my discharge papers bursitis or (forget) but not lyme and reccommends corto-steriods as part of my treatment. the animousity is so strange and frightens me to go to drs.

and, from 1st grade thru 4th grade, we had my daughter in a small, private quaker school due to behaviour problems because she had un-dx lyme/babesia and needed to be in a small classroom.

lots of local drs send their children to that school. by unfortunate coincidence, my daughter's classmates mother is a prestigious pediatric infectious disease specialist of the allen steere two weeks and your cured variety. and revered by many at the school she is very well known for her HIV research. and a very scary person. lots of animousity from her and her friends.

she could have told me what i had before i got infected yet again and then didn't seek med care for a throat infection which is when the severe pain kicked in and never went away and i became deathly ill. i know she new. if she didn't know, is completely ignorant of t.b.d., then she should not arrogantly claim to be "the best". and she should have told me my kids have it and my husband should be tested.

these were the fellow moms i was confiding in. telling them the severe abuse instead of med care i was getting. for a yr i was believing i did not have lyme ( tested neg on UPENN tests) and only had "fibromyalgia". i was on death's door and had too many serious things wrong for it to be fibro. and i'm am sure she and others knew it. the creul things they said and did to me. and they would shut me up if i tryed to tell others.

i didn't know about the politics and though i did know she did research on pediatric HIV/AIDs, was too alzhiemers to realize she ws a dr let alone a pediatric infectious disease specialist.

even after i tested pos. and complained at lack of med care, no dr parents there offered any help. i got wierd looks when i used the walls to walk. they are all in the same social circle. all the drs know each other around here.

our first pediatrition - lots of bad things to say about her - was often a guest of members of the small swim club we belonged to. that these horrid drs are also part of my community and looked up to and friends with people at our children's schools and swimclub and even neighbors and others, led to us really falling thru the cracks.

i even went to the quaker school principal and the head of lower school for help when i had a pos pcr of my spinal fluid and although blue cross/blue shield would not say no in writing, they would not say yes to the i.v. abx a dr prescribed. they kept for many months saying "we need more information". the school officials said they would put thier heads together, and did nothing. though i did get a visit from social services right after i asked for their help.

the pediatric infectious disease specialist and other dr parents there as well as alumni had donated lots of money to the school and they were about to do a multi-million dollar addition to the school.

as far as social services, it backfired because the woman who investigated had a mother who lived in NJ and had gotten very sick with lyme. they caught it pretty early and she got months i.v. and recovered. they decided we were excellent parents doing the best we could, the mom is just very sick.

that is what they do when you start speaking out. they say you are crazy and not sick and try to take your children away.

as far as the musical halucinations, i read in the post below that it happens in elderly patients. i am only 44. the first vivid music halucination happened when i ws in my mid 30's, still un-dx. i first got acutely ill (though very likely had it before as well as my husband) in '91 after a trip to nantucket and again in '93 trip to nantucket. we now realize we took photos of me with the rash. then bit locally again in '96 and '98. dx in '99, then promptly undx by an I.D. as well as other specialists.

like others, i did not tell anyone about the music halucinations - except my husband. we already knew i had gone crazy. he was very protective of me. we just did not know an insect bite/bacteria infection could do all this to you.

strange strange disease.

oh, i came across this on another website. i do not know enough about HIV/AIDs and the politics to know how honest this article is, but i found it quite disturbing.
http://www.thehealthforums.com/showthred.php?t=13118

also: http://www.nypress.com/
NewYork Press, NY
Volume 17, Issue 28
July 13, 2004

it asserts that children who are not sick are being forced to take part in studies (some sponsere by the gov.) and forced to take toxic drugs that are making them very sick.

it says that not all who are HIV will get sick with AIDs. i have heard that. it says that the HIV tests (many of them anti-body tests) are not accurate and there are 70 common conditions that can cause them to be false pos.

poor children in NYC, who were previously healthy are being taken from their caretakers by social services and force fed these toxic drugs and made seriously ill. when they die, it is attributed to AIDs and drug toxicity is never given a thought.

we all know about tests being inaccurate, especially antibody tests, but drs using the false results for diagnosis (or not dx and withholding treatment). the NIH is involved with these studies. and we all know about Klempner from the NIH and his "lyme studies". and drug co's including Glaxo (sp?) are also involved and how much money they stand to make from keeping people sick and suffering. and "prestigious" drs....

i don't know what to think. but i did know a pediatric infectious disease specialist personally who was very involved in pediatric HIV research and claims to be the "best" - had on her website 10 days abx all that are necessary to treat lyme, prognosis is excellent for lyme and "post lyme" patients and "some drs" treat with too many abx. she practices in NJ. i have nothing nice to say about her.

Drove my hubby crazy too,cuz,I really did smell it and knew we had to get rid of it.

Lucky people that smell the good stuff.

Oh and the musicals coming from my head first thing in the AM,well let's just say if I could have gotten those tunes on paper,I'd be one of the newest and bestest! show tune writers on broadway.

Oh well,I enjoyed the musical side for awhile,that always intrigued me,what is hidden in the brain and then comes out in moments like this.

I quess the music was the comfort side to this horrible mess.

Caryn you are scaring me for my son.

daystar,
I had a great aunt that "knew" things. Once everyone was sitting outside on a sunny day under a huge old tree and my aunt insisted everyone go inside--that lightening sometimes came out of no where. They weren't in the house five minutes before the tree was struck by lightening.

She lived up in the country and it was a family secret and not to be talked about.

A lot of times people raised in stressful environments are more intuitive--they have to develop this skill--it is a survival mechanism.

Caryn, my parents divorced way before everyone was doing it. I remember the mothers at the country club wouldn't talk to my mother any more and they would ask my sister and me all these nosey questions that at age 9, I didn't have the confidence or knowledge to tell them to mind their own business. When they were finished grilling me for their gossip fodder they would say, "that's all dear, you can go." I am so sorry those horrible parents were mean to you.

When I was 24 I went hyper thyroid. I got extrememly thin very quickly, just gross looking, and was crazy. and my brother (a doctor) never told me to go see a doctor. He had to know something was not right. I lost my job and my boyfriend (we're even I gave him LD). But my brother had to know and he never said a word.

daystar - I think you are on to something. I have always been intuitive and I found it interesting regarding how childhood stress can contribute to the strength of one's intuition. I also do think that with lyme and tbi that while some of the parts of your brain may be damaged that other one's awaken.

The other night my husband asked me how to figure out the volume of a cyclinder. Now mind you I guess that isn't that hard of a formula...but I just rattled it off without even thinking. I was thinking, "good grief, I still have it!" I did not enjoy math or figuring out equations but there it was. It gave me such a boost I cannot tell you. So I do think that our brains are amazing at healing. It is known that if some part dies that other cells will take over the part that has been destroyed. This of course is only in certain cases where the area destroyed is not a critical area.

Interesting stuff...

Thank you for your most generous comment.

I almost feel inspired...

HOWEVER, while we're talking about brain cells ... I thought I'd exercise a part of my brain that rarely gets any exercise...even though I'm not sure where it is IN the brain...

Today, I thought, I KNOW, I'll mess around with my blog template because there are things I don't like about it...

INTUITIVELY I think: I CAN DO THIS.

And I know the changes that I want CAN be done...but I'm not being very successful right now.

IF ANYONE around here happens to hallucinate in HTML codes - please email me immediately! Please - before I do something dangerous like throw my laptop against the wall.

I feel a Lyme rage approaching...
Please help.
Thank you.

I am sorry to hear about the flooding but glad you are alright.

Sorry Dr. WA I probably have gotten your post way to late and that lap top is strung up on your chandellier dangling from its cord I hope you got that template figured out.

When I say my brain is reconnecting I don't seem to be remembering useful grounded stuff just random crap that I couldn't remember when I needed it years ago like on an exam in high school. Drat!